Sarcoidosis Answers for Physicians, Nurses and Patients

Here at SarcInfo, between 2002 and 2004, we identified the cause of Sarcoidosis, and successfully trialled a curative antimicrobial therapy. During 2005 and 2006 the US FDA designated the antibiotics Clindamycin and Minocycline as Orphan Products in the treatment of Sarcoidosis, and studies are ongoing elsewhere.

For information about this breakthrough, please post your questions at the current study-site, or the Autoimmunity Research Foundation.
 
This archive of the historic study is maintained by volunteers from the Foundation. The material here provides useful background, but much of it is now out-of-date.

** Patient Tutorials **

 Click here to read "WHY DID I GET SARCOIDOSIS? WHY ME? 

  Click here to read "REMISSION IN SARCOIDOSIS"  

 How a Pathologist can see Bacteria causing Sarcoidosis 

"How does Doctor measure my ACE, and my D-metabolites?"

 Weaning from Prednisone

 Protecting your eyes in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Hypervitaminosis D Symptoms    The SarcInfo F.A.Q.

Medical Abbreviations          CBC Radio Show

Protocol Phase 1-First 3 months

  

** Papers for Physicians **

Antibacterial Therapy induces Remission 

Implications for Autoimmune Disease 
(Here is Fulltext preprint)

Antibacterial mechanisms for ARBs 

Antibiotics in Sarcoidosis- The 1st Year 

Rationale for abx in Sarcoidosis 

1,25-D and Angiotensin II

"New Treatments Emerge.."

Jarisch-Herxheimer in Sarcoidosis

Vit.D and Calcium in Sarcoidosis

Protocol Phase 1-First 3 months

The NIH ACCESS Study finds Sarcoidosis does not go away - Click here to see, and print, the brochure


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 ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-03-02 13:18

For a number of years we have known that people taking Steroids, such as Prednisone, can develop a condition called Avascular Necrosis where the ends of the longer bones become soft, and the joints permanently fail to work properly.

A new study (from 3 University hospitals in Korea and one in the USA) using the latest MRI techniques to study the Femur (in the leg) has shown that Steroid dosages of only 60mg can cause this degenerative bone disease in as little as one month.

Up until now it had been assumed that steroids were reasonably safe unless you took them for more than a few months. Necrosis had been associated with longer term use of lower dosages of Prednisone. The new study shows that 60mg per day for 1 month was enough to cause Avascular Necrosis in one of their patients.

Most of the patients in this study who developed Joint Failure had been treated with 60-100mg daily for 2-8 weeks and then gradually tapered over 6 weeks to 2 years.

Unlike previous studies, this one showed that the initial damage starts very early - within weeks of starting the prednisone - and nearly all of the patients who will eventually lose the use of their hips are exhibiting joint pain within the first 12 months.

If you have taken prednisone at doses of 50mg per day or above you will not necessarily have this problem. Only about 1/3 of patients develop it.

But if you have any joint pain you should print out the article and immediately FAX or hand-deliver a copy to your doctor, asking them to review your joint pain and/or your corticosteroid (prednisone) prescription. Follow up the article with a phone call to make sure that it has been read and assimilated.

I have to say I am very sad that it has taken so long for this danger of Prednisone to be evaluated by the medical profession. Doctors have been prescribing Prednisone for 50 years, and it boggles my mind that anything like this might have remained un-investigated for so long. I myself was given this drug back in the 70's, though fortunately I refused these higher dosages.

Again, I am sorry to be the bearer of this news, but at least we now know what is going on.

Sincerely,
Trevor
ps: There is another new study that shows that Avascular Necrosis of the Femur (in the leg) can result from the application of Topical Steroid Creams for Eczema on the Face. What we have been told about injections and creams and inhalers not being "dangerous" must now be immediately called into question.

UPDATE 1/6/2003 Evidence is growing that inhaled corticosteroids, just like steroid pills, can cause bone loss (Click here)
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Nancy (---.public.lawson.webtv.net)
Date:   09-03-02 20:40

Trevor,
Well here we go again. I knew when I read the information about Avascular Necrosis, on this site, that I finally had a name for all my joint and bone problems. After 4 surgeries from DDS, all the fussion and other patch work since 1970, it is falling into place. In 1998 I was dix. with sarc and immediately put on 60mg of prednisone for 3 months, then started tappering down when I had Bell's Palsey syndrome and the increase of pred. then a few months later I was in the hosp. for 14 days on steriods before they did colon surgery, and I am still on 5 mg at this time. When I tried to drop to 2 1/2 half mg one day and 5mg the next day the pain increased and that's when I found this site. When are the doctors going to find something to replace this pred. If anyone has a choice not to ever start on this med. believe me "It ain't worth it" The damage that is being done under the covering up of the pain using the pred. only comes back to you in the end and you are also left with all the damage to the body as well, only I think with more damage as it goes undetected to long. My only hope is that I can get completely off of it before the sarc hits another body organ. It's like living on a valcano, waiting for the next eruption. lol
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-03-02 21:11

Yes, Nancy,

It is fast becoming obvious that many of the illnesses which patients attribute to 'Sarcoidosis' can be traced back to treatment with Prednisone.

This, coupled with the tendency to ignore the real causes of the disorder (like bacterial infections) once prednisone has been administered. Prednisone actually makes the bacterial infection worse (and able to spread) by inhibiting the body's ability to respond to the microbes.

..Trevor..
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Bill Murray (---.ri.ri.cox.net)
Date:   09-08-02 22:24

Trevor, I have started experiencing pain in my hip area or i guess my lower back. It feels like the pain you would experience from lifting stuff for a long period of time. The thing is , I dont have to be doing anything more than just standing up to experience this. Could this be the start of joint pain from the prednisone? They still haven't started to wean me off of it yet. I am still on 30 mg a day. Its been 8 weeks now I think. My pain in my side has not changed, the night sweats are stil there and I am still getting fevers all the time. To add on top of this now, they put me on 300 mg of Avapro a day now and also a diuretic. My blood pressure the day of my appointment and also a few days since( i went out and got a blood pressure cuff) was 150 over 110. I think this might also be from the prednisone. I think i read that it could cause high blood pressure. What do you think?
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-08-02 22:34

Bill,
Talk to Doc about increasing the ARB Avapro to 150mg every 8 hours, or (better) starting on Benicar, 40mg every 8 hours. More info is in one of our new manuscripts. The manuscript is about Diovan, which is a better ARB than Avapro and not as good as Benicar (IMO).

Your blood pressure will drop once the ARBs get control, and then you can ask Doc to drop the diuretics (which are a nuisance).

The high blood pressure gradually goes as you get rid of the 1,25-D problem. Mine is down to 110-120/60-70 now. But it started at about your level (2 years ago). Your blood-work liver panel returns to normal as well.

All the prednisone does is to delay the resolution of the inflammation

..Trevor..
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-09-02 11:14

Dear Trevor:
I read and found Avascular Necrosis when I scouring the web to find out why my right hip was so painful and weakness appeared whenever I led with my right leg. I cannot stand on right leg today without holding onto a railing.
I asked the internist and orthopedic surgeon and for some reason they didn't want to call it that. The orthopedic surgeon first said it was bursitis in the hip and gave me two cortisone injections spaced between several weeks. I was put on P.T. for two series. Nothing helped the hip. It aches, is weak, even sitting.
The internist said that Avascular Necrosis causes a lot of pain.????? Well yes I said...I do have a lot of pain (in fact she prescribed wearing the Duragesic pain patch instead of pills with Codeine and Tylenol). ????? I can't figure it out.
First I don't think you can have bursitis for a year and half....? in the hip or anywhere else. Bursitis comes and goes. I had it many years ago in a shoulder at least it was diagnosed as such. After a week's time it subsided.
My right shoulder is now in same condition...pain. swelling, loss of being able to use arm without a lot of pain.
MRI's on both show swelling (effusion) tears, enlargement of bone. Isn't that Avascular NEcrosos???
I give up.......
Caroline McG.
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Judy V. (216.94.13.---)
Date:   09-09-02 13:00

I have suffered with hip pain on and off since I was a child. I was told it was growing pains. I had physiotherapy when I was 18 years old and was told it was weak ligaments and muscles. Since I used to be able to pop my hip out of the socket, it made sense. My grandmother had one of her hips replaced twice so the issue is a concern. The pain in my hips disappeared for several years. When I was pregnant with each child my hips were extremely painful and I could hardly lift my legs. The dr said it was normal and it dissapeared immediately after delivery. One has been bothering me for the past year. I thought it was from sitting in the cold arena so I started bringing a blanket and it helped for a while. One hip has been constantly sore for the past few months. I am guessing the current problem is enhanced from the prednisone but could my previous problems have anything to do with Sarcoidosis? I mentioned my hip to the doctor and he said make sure I have lots of calcium. My dose shouldn't be high enough to cause problems yet.

Judy
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-09-02 13:27

Dear Judy:
My hip pain started....after a fall and being on Prednisone for 9 months duration for control of Sarcoidosis.
It has been a year and half now.
I had no problems with my hip before.
I had two long series of P. drug....one for 9 months and another for 5 months. The drug was needed at the time but as soon as possible I weaned off the oral P. drug. I still use Pulmicort which has P. in it.
My right shoulder is now starting with same symptoms of pain stiffness etc. and I injured that a year ago while on P. drug.
Caroline McG.
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-09-02 14:34

Judy V,
The placenta manufactures extra 1,25-dihydroxyvitamin-D
Along with inflammation and the kidneys and the solar receptors in the skin, it is one of the few the sources of 1,25-dihydroxyvitamin-D in the body.

The extra pain would thus be consistent with your other symptoms, and with your high D-Ratio. I suspect you have had the disordered D metabolism since a kid. This is usually the case with Sarc patients because it is the disordered D metabolism that is the basis of the genetic pre-disposition to form sarcoid granuloma (that is explained in our manuscript "The Angiotensin Hypothesis". It is not yet published, or proven, I will email you a copy).

Anyway... so, the previous problems are most likely related to your genetic pre-disposition, and then, after the sarc inflammation hit, exacerbated by the extra 1,25-D coming from the granuloma.

The 1,25-D actually catalyzes the formation of inflammatory cells (see the paper for details). Leading to painful joints and the muscles in their vicinity.

A high and uncontrolled (surging) 1,25-dihydroxyvitamin-D level. At least you now have proof of that. Next step is to get it under control...

..Trevor..
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-09-02 14:55

Caroline McG,

Have you had the tests used to diagnose avascular necrosis described in this article done? If so, what about getting a second opinion?

It is very hard for doctors to admit the problems with prednisone when they know of nothing else that is better. Here is Larry King's recent interview with Jerry Lewis, who is suffering from side effects of prednisone. Lewis quoted heart surgeon Dr. DeBakey saying prednisone is the "greatest worst drug ever invented." You can see the effects of the drug in recent photos of Mr. Lewis.

It is possible that your doctors are correct: that your hip pain is not from osteonecrosis. I have found that doctors of osteopathy are skilled in evaluating musculoskeletal disorders causing hip pain. Finding the cause can be complicated. I you haven't been given a thorough exam, with muscle testing as described in this article, I suggest you find a doctor who will do the them so the problem can be identified. There are conservative therapies, such as manipulation, massage or electric stimulation, that may relieve pain caused from inflammation (sarcoidosis is inflammation) of the bones, muscles, tendons or nerves in the hip. That has been my experience.

By the way, don't overlook telling the the doctor that you had the problem after a fall. That is common in musculoskeletal problems.

Belinda
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-09-02 15:05

Belinda,
I disagree with Dr. DeBakey saying prednisone is "greatest worst drug ever invented."

There is no proof that it is great. In fact, from a molecular chemistry point of view, it is so poorly targeted at inflammation that it even hurts the body's hyperglycemic capability.

Its discovery and adoption as a "wonder drug" in the 50's set back medicine several decades. Up until the last few years nobody has had the courage to question the effectiveness of this drug. Now the studies are pouring in and we know that it does far more harm than good.

If we had been working on replacements 30 years ago we would indeed have that "wonder drug" today. We don't. All we have is prednisone, the drug that nobody dared to criticize.

It is no "Wonder Drug". It is a "Thalidomide".

..Trevor..
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-09-02 15:21

Trevor,

I see your point, certainly. I was focused on "worst drug." Sadly, doctors continue to use prednisone in spite of obvious, visible, devastating side effects. And some patients blindly accept the doctor's reassurances that it is okay.. that all the risks have been considered.. that they "have no choice." Maybe some patients even believe prednisone will heal their lungs (as Mr. Lewis did), although they can see the visible side effects. We have seen no studies with healing results from using prednisone in sarcoidosis.

And Caroline...

The point I got from the story about the woman initially diagnosed with sarcoidosis, treated with prednisone, then diagnosed with TB was that, if there is an infectious agent, prednisone is the wrong treatment. It suppresses the immune system, allowing infection to spread in ways that wouldn't be possible without its use. That is why people like Trevor are concerned about the latest research that has revealed several infectious agents in sarcoidosis, and at least one replicating inside the granulomas.

If sarcoidosis is (like TB) caused from a pathogen, whether we can see it or not, then wouldn't prednisone be the WRONG treatment?

Belinda
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: caroline (---.win.org)
Date:   09-09-02 17:04

Hello,
yes, it is the wrong treatment! I curse the day i ever took it. my hip causes me a lot of pain and now my shoulder. i wonder how often sarc. is misdiagnosed? my younger brother - case in point. 'they' thought meniere's until he told the doc's his sister had neurosarc. now he does too???.....

i wonder if that made the diagnoses(?) easier. he has tinnitis, some brain lesions and balance issues. the more i have talked to him, the less i am convinced he also has it. BUT, if so, he does add much credence to Trevor that you must have a genetic pre-disposition. (i know he wasn't adopted <grin>. i was almost 7 when he was born, perfect age to play mommie!)

i am still angry about a conversation with my doc today. she will not prescribe minocin but wants me to up my dose of MTX. in addition, she told me she would like to add some prednisone!!!!!!!! told her an emphatic NO! I have confirmed osteoporosis and no veins left, my right hand makes a cruchy noise when i pull anything, such as to put shoes on. I cannot believe she asked this. The only way I can see me take it again is to be convinced it is life or death. Imagine pred. is ok but she wouldn't prescribe an antibiotic. I sent my brother reams of pref. info by email. I can only pray a doc doesn't convince him to take it - he already has back problems. I have requested he read all the D info and share it with his doc.

Caroline
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-09-02 17:34

Caroline,

Uh.. er.. okay.. if you have decided you will take prednisone only if you are convinced it is "life or death," that might lead to an outcome you may not have expected. Do you remember my disagreement with a pulmonologist about whether I would take prednisone? When that was all over, I realized what had happened to lead up to that, and how I unwittingly helped set up the scenario.

Here it is, please read carefully:
The doctor asked me early on "what it would take to convince me to take prednisone." My answer was that I would consider prednisone only if I was in danger of losing the function of a vital organ (death). So, the doctor evidently saw that as 'the challenge identified,' and he worked on convincing me I was facing precisely that. My goal and focus was to get well without resorting to prednisone. I thought we were working toward the same goal, because I had clearly stated my goal to him. Be careful you haven't given the doctor something to focus upon and a target for their persuasive abilities. They are trained to deal with "non-compliant and difficult patients."

I am compelled to say one more thing:
Sometimes doctors lose trust in their patients. No one talks about this, although we talk about our losing confidence in our doctors. When the doctor no longer trusts the patient, they give no credibility to the patient's complaints or identified needs/problems. If a doctor reaches that point with you, it is like a failed romance; one side, alone, cannot make the relationship work, no matter how much effort/energy they put into it.

I am just sharing my experience - maybe it will be useful for someone.

Belinda
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-09-02 19:15

Caroline, Belinda, Trevor:
Nice to see two of us are here online (Caroline).....Prednisone can be useful....but sometimes the use can cause more problems with bones, tendons and for me it did. No one is to blame. However, I am not taking Prednisone now or hopefully, not in the near future.
I have had MRI's Cat Scans, x-rays, P.T. for two series to help with my hip and now my shoulder. The NIH has an excellent report on Avascular Necrosis written up on their website. I printed it out. It is so clear to me that my hip has the problem and no one has said I don't. The end is arthritis anyway....and same treatment would be for a hip bone replacement just as they do for "plain" arthritis.
I have always said to be the best patient is also to be a detective.....and you help the doctors find out what is wrong with you. As a nurse of long standing, this statement has been my motto.
Jerry Lewis has stated that he has Pulmonary Fibrosis. He has been a lifetime smoker......and I heard that he was just recently admitted again into the hospital. I knew right away when I saw him that it was the Prednisone face. I had one almost as puffy when I was on P. drug for an extended period of time.
I wish we had a conference in the north east for Sarcoidosis. Has anyone any ideas as to how we might be able to have more conferences around the states?
We all have to think of ways to make the public aware.
Caroline McG.
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: caroline (---.win.org)
Date:   09-09-02 20:38

Hi Belinda,
You make a very valid point on both counts. I will just continue to say no to pred. a reason is not necessary it is my body and my life. Also as to the patient/doctor relationship, i feel the relationship i have with this current pulmonary doc is on very shaky ground, at least in my eyes. I have so much confidence in the D avoidance now that both points will soon be moot!
Caroline from MO
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-10-02 00:50

Caroline McG,

I don't think avascular necrosis is the same as either osteoarthritis or rheumatoid arthritis. Doctors should be able to tell the difference.

Avascular necrosis is 'bone death' from loss of blood supply to the bone.

Osteoarthritis is a joint disease that mostly affects the cartilage, which wears away, allowing the bones underneath to rub together and wear down.

Rheumatoid arthritis is an inflammatory disease (like sarcoidosis) that causes pain, swelling, stiffness, and loss of function in the joints. RA can make people feel sick and tired. By the way, more than seven years ago, minocycline was shown to be safe and effective for RA.

Hip replacement surgery is sometimes used to treat all three conditions, but they are distinctly different problems affecting joints.

Belinda
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-10-02 10:11

Judy, Trevor and all,

Researchers with the National Institutes of Health are trying to understand more about how pregnancy affects the immune system, because there are major chemical changes (as any man or woman who has been there knows) during pregnancy. This NIH study of women with normal pregnancies showed their third trimester serum levels of 1,25-dihydroxyvitamin were 2- to 3-fold higher than postpartum values.

As someone who has experienced the pain of high levels of 1,25-dihydroxyvitamin D, this gives me an understandable explanation for why pain prevented Judy from raising her leg when she was pregnant: the multiplied levels of the potent form of vitamin D!

It's good to see that research results are giving us a better understanding of sarcoidosis, although much of the enlightening research isn't specifically targeted at sarcoidosis.

Belinda
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Judy V. (216.94.13.---)
Date:   09-10-02 10:49

That is very interesting. That would also explain the fatigue that they also said was normal but I have never seen any other pregnant people falling asleep at their desks. I use to have to walk around to stay awake. My daughter will be 12 tomorrow (a date nobody will forget). I really do wonder how long I really have had this. Alot of pieces of the puzzle.

Thanks
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-10-02 10:57

Judy,
The genetic pre-disposition was almost certainly born with you.

It is a pre-disposition to have a disordered 1,25-D metabolism. There may be other factors, but that one is certain (IMO). There are researchers working on isolating the specific defects, but they have not had much success yet.

Consequently you would have had the tendency to fatigue, sensitivity to sun (but to a reduced degree) all your life. There are other common traits, including mild paranoia and irritability, but not everyone has these.

When you put the current inflammatory episode into remission you will be back at the baseline, as you were in your youth, before the 'microbes' came along.

Trevor
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   09-10-02 15:28

Dear Belinda:
I do know that osteoarthritis and Avascular Necrosis is not the same thing. I took my symptoms and put together the explanation of Avascular Necrosis.
I had been on P. for many months....for two series being off P. drug for 5 months and resuming it again.
I fell one day but not on my hip and later I felt pain and weakness in right hip. x-rays were taken, MRI done and Bone Scan too. The doctor described what he found and said he could not say exactly why it was not responding to heat, cold and P.T. and cortisone injections. I cannot sit for any longer than 20 mins. at a time....aches all the time, and is weakened so that I cannot stand on right leg unless I hold onto railing or crutch. It aches up into the "butt bone" I call it.
The end result for these problems are hit/joint replacement. I guess I should let them call it anything they want to....and just get a hip replacement!
Caroline McG.
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   09-10-02 18:13

Caroline McG,

Maybe I misunderstood. Anyway, I'm sorry you are having so much pain with your hip. I do hope you can find help with that. I just know my osteopathic physician has treatments to make my hip pain go away, and I am grateful.

Belinda
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Kathy (65.121.96.---)
Date:   11-10-02 18:30

Belinda -

In response to your posting about physician relationship - I can guarantee I am classified as a "difficult and non-compliant patient" (but not with my current physician). I question things, I do my own research, and won't accept answers I believe are unacceptable.

I do have an advantage - I grew up in and continue to work in healthcare - and I know how the system is supposed to work - and it infuriates me when the system fails, for non-medical reasons, such as attention to research funding, lack of coordination of care, and many other reasons.

I won't accept bullying behavior, lack of appropriate response to problems, and sloppy, uncoordinated care, especially within a facililty that is #1 rated in the country.

Absolutely you must have a trusting, mutually-respective relationship with your doctor! But that means your doctor doesn't force agendas on you, especially when you are vulnerable, as when you were with your physician.
We are the patients, and we have rights. Many physicians and facilities seem to have forgotten that fact - and we are supposed to be happy with whatever portion of "healing" they may dole out to us. I must confess, that when (what a nice word instead of if!) I get well, I would like to help in patient advocacy - healthcare must be reminded that WE count and that WE are the customer, and WE deserve humanity, dignity and respect.

As you can see, my experiences with the facility I went to (National Jewish in Denver) were incredibly negative. But I thank you for sharing your experience, and for allowing me to share mine. Best of luck to you!

Kathy
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: stephanie (---.proxy.aol.com)
Date:   01-04-03 10:14

Hello, I dont know for sure if Im in the right place or not , but something come up with a shot that is a steroid kenalog cortizone used for allergies and I have been taking it for about four years and Ive noticed in the hip on my left side where they administer the shot is sunk in now and I went to have it checked and he said he recommended that I not take the shot anymore..I have a big sunk in spot and you can see it reallly well..It doesnt really hurt but aches very little, but he thinks I had some fatty tissue loss or muscle....Now I dont know what to do? He said hes only seen this one other time this last year and he said shes took the same shot and doesnt know what to do abvout it...any answers on this about the shot? thanks, stephanie
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: chelsea r (---.rmt.net.pitt.edu)
Date:   01-04-03 12:02

I've been wondering about pregnacy and sarcoidosis. Everything I've read or been told is that pregnacy doesn't affect sarcoidosis and at times makes it better because it increases the level of natural cortisol produced? They said they'd be concerned about the 3 months postparteum because sometimes symptoms come back. Does any one else have stories regarding their pregnacy and sarcoidosis. Include what stage of sarcoidosis you had at the time.
thanks,
chelsea
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 12:40

Chelsea
During pregnancy the placenta manufactures extra 1,25-D, much as the granuloma do. Unless you understand this, a pregnancy could be a little rocky.

So, that's my contribution (from a biochemical point of view)(but I have no personal experience to share )

..Trevor..
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-04-03 13:24

Stephanie,

Atrophy (wasting away) of subcuantous fat and muscle is one of the side effects of corticosteroid injections. Here is a small picture of muscle atrophy in a young woman as a result of corticosteroid injections for seasonal allergies. Click the the small picture for more information.

http://www.sarcinfo.com/atrophy.jpg

I have found no information about what you can do to help recover (other than stopping the injections as your doctor said.) Here is a report from several years back about this condition. It says, "Occurrence of local atrophy after corticosteroid injection is relatively frequent yet unappreciated. It is more common in young women and girls who are given preparations with a lesser degree of water solubility. Although the condition is often reversible, instances of long-term disfigurement are well documented."

I wish I could be more encouraging, but you may have to wait and see how the recovery progresses. Perhaps someone has had experience with this condition and will share their information.

Best wishes,
Belinda
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-04-03 14:08

Interesting photo, Belinda.

It really brings home that when the studies are warning about prednisone causing "muscle myopathy" they are talking about a very real problem. This is an graphic illustration of that.

Stephanie, I truly hope that your atrophy was not this bad. It is always tough when we trust our health to the care of people who let us down. It is probably wrong to blame your doctors - they were just doing what 'the books' told them to do.

We need an information revolution in the healthcare industry. Every GP needs to see this picture.
Now if we could only get them to use the Internet...

..Trevor..
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Debra Simmons (---.freeuk.com)
Date:   01-05-03 09:46

Hi, I have just read your message re steroid treatment in sarcoidosis. I have been diagnosed since 1977 and have had varying amounts of prednisone over the years. My bone density has decreased quite rapidly and I am now taking Didronel daily (for the last 2 years). In 1996 I was treated surgically for breast ca and then had radiotherapy and chemo. One of the constituents of the chemo, was cyclophosfamide, and although I threw up for 6 months on and off, and lost my hair, my sarcoid calmed down. I finished my last dose of cyclosphosfamide in 1999, and since then have not had any symptoms from my sarcoid, until recently. It is back, from where I know not, but it is definately back. I do not want to take steroid therapy and did not take it for the two years before my ca. breast.
What do I do? My shoulders ache dreadfully, this usually starts after lunch and then I feel down hill till the evening.
I am a nurse and working part time, lots of people are unaware of this illness, and even the chest physicians unless they are sarcoid specialists are frequently baffled. I have now been referred to Royal Brompton Hospital in London, and feel as if I have finally "come home".
are there anymore of you out there that feel the same? Debra
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-05-03 10:34

Welcome to SarcInfo, Debra,
Well since you are a Nurse I will get a bit technical. Firstly, your skeleton. Your body regenerates bone to keep it stong, about once every 10 years, Click here for the current 'textbook' on bone and osteoporosis. It used to be you just took Calcium to make bones stronger. Now we know a lot more.

Almost certainly you will be running with high levels of the hormone 1,25-dihydroxyvitamin-D3. The textbook says that this hormone "stimulates osteoclasts". Basically, osteoclasts are supposed to be in homeostasis with osteoblasts. The function of the 'clasts is to break down old bone, the 'blasts build new bone. Stimulated clasts means your bones get resorbed into your blood and deposited into soft tissue or excreted.

Prednisone blocks the action of NuclearFactor-kappaB, the protein that is the NK part of the RANK and RANKL that you will find in the textbook. This stops the skeleton from regenerating. If you were taking that your bones would be getting a double-whammy.

Even if they have reasonable bone mass, a sarc patient's bone is usually old and weak.

Didronel is to be taken for a maximum of 6mos (in the USA) and is not indicated for osteoporosis, but only more serious post-surgery recovery. I have no idea whether it would do any good. If it is not doing good, it probably is doing bad. Only you would be able to sense which of these is in play.

The main answer to your bone problems is to reduce the 1,25-D. In the USA any doctor can draw blood and send it off to have 25-D and 1,25-D measured (see the tutorials at the top of the page). I know that the assay is done at the Manchester Royal Infirmary, maybe other places in the UK. The D-Ratio can be used to estimate your degree of inflammation, and it can be used to track the progress of therapy. I will send you a copy of our latest paper by email which explains all this stuff in more detail.

It sounds as though one of the chemo drugs managed to kill most of the bugs hiding in your granuloma, and that they have gradually multiplied back. It is not a simple job to kill them, but it is not impossible or dangerous, either. Antibiotics are much more effective at doing it than chemo

From the point of view of symptomatic relief, Diovan does the trick, look at the Clinmed paper at the top right of this page for more info on dosing.

Whew. I hope that is enough to get you started. The amount of stuff here can be overwhelming. Just start with the tutorials and then work through the key threads that have stars in their name, like this one.

The cause of this disease is now known (to us at least) and the new treatments are just starting to work out real nicely...

..Trevor..
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Debbie (---.macomb.k12.mi.us)
Date:   01-06-03 10:57

I thought you might be interested in this article stating that evidence continues to accumulate regarding the use of inhaled steroids and bone loss. If I missed this article and it's posted---------please erase me! Have a nice day!

Debbie

Here is the article on inhaled steroids and bone loss.

ADMIN NOTE: Debbie - I have added this article to the links at the bottom of the page. Thanks for the tip
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   01-06-03 13:23

Dear Trevor:
I found out that taking Prednisone daily, up to 40 mg. at one time did cause muscle and ligament tears.
There has been a recent study done on Arthritis pain; by a woman doctor and she mentions Magnesium or lack of it, can cause joint pain. I did not catch her name, it was on the news on t.v.
She advised taking it along with Calcium daily. Have you heard of this treatment for Arthritis pain?
Caroline McGuirl
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-06-03 14:01

Caroline McG,
It is useless to listen to people on the TV, who are generally healthy and have no sarcoidosis in their system, and try and apply what you hear to sarcoidosis patients such as yourself with metabolites that indicate inflammation as being your major problem. Please focus on the inflammation.

Calcium will not help sarcoidosis patients.
In fact, even the FDA warns against too much calcium supplementation of Sarcodiosis patients. Stay within the RDA (1000mg) if you want to be safe.

Magnesium will not cure you, either. Unless you focus on getting that 1,25-D down into the lower end of normal then worrying about calcium or magnesium is like Nero fiddling while Rome burnt.

It is the hormone 1,25-dihydroxyvitamin-D3, and all the other metabolites which the hormone controls, which are in control of your bone metabolism. Oh - and the steroid inhalers that you are using are also doing a lot of harm to your bones(Click here to look at this article).

..Trevor..
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Jane (---.ap.plala.or.jp)
Date:   01-08-03 01:13

Chelsea

I went through two pregnancies before I received a diagnosis but by symptoms I would guess that my disease state was stage I during the first pregnancy and stage II during the second. My first pregnancy was more or less normal bar an acute metallic taste in my mouth that persisted for the duration (probably a symptom of hypervitaminosis D3 in hindsight). I was pretty short of breath during the second however and was forced to give up my professional work as a result. Both births proceeded without event or intervention and I had two adorable healthy babies.

In my experience however pregnancy was a breeze to the challenge of looking after two infant children (born 23 months apart) while suffering from the fatigue of Sarcoidosis which for me has been the most crippling aspect of the disease. This fatigue continued unabated for ten years until a chance course of anti-biotics (appears to have) put it into remission earlier this year. Although the paralysis in my arms and legs has returned, relieved of the burden of fatigue, I have been able to cope with this in good humour. I believe that the possibility of interdicting the inflammatory process and therefore the fatigue of Sarcoidosis now puts the disease in a very different light. While the therapy is still being tweaked and one may have to make adjustments for tissue damage already sustained, there is light on the horizon (albeit as seen through sunglasses) and one is in a much better situation to make informed choices.

Hope this is of some help to you.

Jane
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-08-03 05:57

Jane,
The Clarithromycin was an effective antibiotic for me, but only gave me mild (and strange) herxheimer compare to the antibiotics that had most effect. I suggest you look into trying to track down additional bugs. Obviously Minocin and Bactrim are the two most likely candidates at this point.

..Trevor..
ps: Thanks for the tip about Clarithromycin - it works, and I listed it as one of the three antibiotics known to be worth trying. There is a similar one available in the EU which has an even wider spectrum, Telithromycin. Is that available in Japan perhaps?
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Angela (---.cache.pol.co.uk)
Date:   01-08-03 06:26

I have been on line for several hours today trying to find answers about Sarcoid. I was diagnosed in 1991 and was put on prednisone for about a year. My doctor told me nothing about the condition and there were no 'books' so I just put up with the niggly pains and strange things that happened over the last 12 years. My doctor put 99% of it down to my being over weight (5 stone was gained through the steroids, Ive not shifted it yet.) So much more is known now.

I have been in tears this morning realising that for 12 years the facial palsy, constant wrist and finger ache, 'hate' of bright light (which makes me feel so angry, try explaining that to an uninterested doctor) and even perhaps the 3/4 times a month severe abdominal pains are due to the Sarcoidosis that my doctor said could not come back.

I began a search this morning because I am worn out with hip pain and asspciated knee pain my lovely doctor calls 'fat related' and I have developed severe shoulder/elbow/wrist pain literaly overnight (typing this hurts!) For 4 weeks I have been so tired.

How do I tackle all this with my Doctor? He is not the same one that diagnosed me 12 years ago and does not hear me when I mention sarcoid. Its all a weight issue as far as he is concerned. I have recently lost 2 stone without trying though. It seems from this thread that prednisone could be the reason for some of my pain. Ive put up with these sympoms for years. How do I get someone to take me seriously again?

Sorry for being a misery but I'm fed up with 'putting up with'

With grateful thanks,
Angela.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-08-03 07:37

Angela,

First of all, I am excited that you already see yourself in a new perspective. With the new information you have, and your new understanding you will be a much more active player on your own healthcare team.

As for your doctor.. you are the only one who can decide how to make that call. I suggest you first look at your relationship objectively and ask yourself how much chance you have of changing his opinion of you and your case. If the odds aren't very good, why spend you time? It's sometimes easier and better to begin anew, after you've asked around and made phone calls to inquire where to find a bright, caring doctor who listens to patients.

It is not likely that a doctor-patient relationship will be successful with the two of you working on two different priorities.. him wanting you to lose weight and you wanting him to help you with sarcodiosis. Reading through the posts here, you will see that many patients have noted their weight came down with little effort as they took the steps (staying out of the sun, wearing sunglasses, taking Minocin, taking angiotensin receptor blockers) to get their vitamin D and sarcoid symptoms under control.

There is good information about dealing with doctors on this thread
Why won't doctors listen
and there is a header at the top of the topic listings, where you will find this website's search engine. You can enter any topic and find it in the archives on this forum (be sure to change the time period of the search parameters to "all dates").

To put it clearly and concisely, "You don't have to put up with it any more."
You can start anew, identify all your symptoms, and let the doctor know your goal is full remission, which you haven't achieved, but you have some research which indicates how it can be done, and would like to procede from there.

I hope this helps, and please ask questions if there is anything you don't understand.

Belinda
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Angela (---.cache.pol.co.uk)
Date:   01-08-03 08:37

Belinda,
Thank you! It has been a daunting day with so much info Id not read before. This site appears to have it sewn up and I'll be reading up as much as possible. I'll keep posting!
Angela.
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: weareloved1@aol.com (---.proxy.aol.com)
Date:   01-11-03 12:01

Red, angry, unhappy face. Where did you get it??

Today is my first day on Minocin. The Doc wrote me an Rx for 100mg twice a day. Isn't that four times as much as Trevor suggests?
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   01-11-03 12:55

Yes, the normal prescription for Minocin is four times what Drs Brown and Mercola suggest,and what we have found most effective for lengthy therapies.

However, it is important for you to get ALL of the antibiotic to work in your body, and so the 1/4 dose regime is better if you use the Minocin capsules, or if you take the generics with a big cup of hot tea, and no milk, OJ, calcium or antacid supplements within 2 hours of the Minocycline.

Red face - you mean moon face or rosacea?
Moon face is due to prednisone, don't know if you are on that.
Rosacea will (temporarily) flare if the Minocin does its job properly, as the herxheimer flare will increase the amount of 1,25-D in your body.

..Trevor..
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-11-03 12:56

Hi,

Yes, if you are taking 100mg Minocin twice a day, you are taking more than you should. You need to take it only every other day to give your body time to recover from its reaction to the endotoxins which are released when the bacteria are killed. This will cause your D-level to increase and if it is high enough already you may feel an unpleasant Herxheimer reaction. Please go to the thread "things to remember when using Minocin".

Meg
 
 Re: Hip, Joint, Shoulder pain? - Steroids - Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   01-11-03 20:44

I thought weareloved1 was referring to your emoticons, Trevor. In case they were.. the red, angry unhappy face appears in your message if you type the side-ways smiley face with a frown. Use the colon : and ( keys to make

Belinda
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Macy (---.houston.rr.com)
Date:   01-12-03 03:04

I have been reading all these posts on Sarcoid and Predisone. I firmly believe I do have Sarcoid and I firmly believe it is the result of an infection years back that never was adequatley treated. I am frustrated and fed up with my doctors. Looking back, I also feel that my Uncle had this and to some degree, my Mother, so if true, the suseptiblity (sp) is there.

I also want to mention that my 38 year old son in law had hip pain. BAD hip pain. He went from doc to doc and finally I took him to a GP and asked that an MRI on the hip be done. This showed Avasular Necrosis due to him being on predisone for 3 years. (prior to us knowing him)

He had a Virus (HSP) and everytime the Infectious disease doc tried to lower his predisone, his HSP came back to some degree.

Had we known him when he was ill, perhaps we could of monitored him better as he had no one here in the states to help him through this mess.

After the MRI and the diagnosis of Avascular Necrosis, I researched this and found that some doctors do a procedure called "Core Decompression".

This procedure buys a person time before a hip replacement especially when one is young.

Even though some doctors say they do this procedure, one needs to find the very best ones to do this if they are a candidate for this surgery.

We live in a very large city and I found 2 that have done this many many times.

He has been pain free now for over 4 years. This can work for a little while or can work for years.

Like Dr. DeBakey said, "great worst drug" these words do fit the steroids cortisone and prednisone.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-12-03 06:07

Hi Macy,

Welcome to sarcinfo. You're right about the genetic susceptibility. It's difficult to pinpoint an exact source of bacteria because we acquire so many over a lifetime. I'm not sure that treating your infection adequately would have made a difference since we are predisposed to react to the bacterial trigger itself.

I'm sorry to hear your son-in-law has such serious consequences of his Prednisone therapy. Hopefully, the surgery will help him.

Have you seen a doctor about your symptoms? Or had your D-levels checked yet? This is the first step on the road to recovery.

Please let us know how you are doing,

Meg
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Macy (---.houston.rr.com)
Date:   01-12-03 10:50

Hello Meg,

I posted on this catagory and also on another catagory in the Sarcinfo.com.

You answered me on both and I certainly appreciate this.

Yes, I had better talk to my GP. He is just like "the Becker" on TV and his staff is similar (-:

He supected Scleroderma or Sarcoid and or Immune problems back in 1999. He sent me to a rheumatologist and please forgive me but this doctor was in his seventies and could not hear well.

He said he would send both my GP and I the report. Neither one of us ever received this report even though I called numerous times.
I gave up on this doc.

This is when I made the appointemnt to see another rheumatologist and received the "cold treatment". So, I am turned off by Rheumatolgists.

NO, I have not had any of the blood work mentioned here for Sarcoid.

No D's or any of the others. I once had a Sed rate which was normal. I asked for an ACE test at my GP's office, back a few years ago and this is when he referred me to the Rheumatologist Doc who never sent out the report. I feel the GP thinks I never went.

My pulmy doc has never ordered blood work. I find that so strange. He just tells me to "keep doing what I am doing". I have no idea what he means by this. I just shake my head in amazemnt and wonder how some of these docs are still practicing medicine.

Enough of me venting. I will post another topic soon and list all the things that I have experienced since 1999. I remember having some blood work back in 1997 and this report did show some abnormalities but the doctor who ordered it "had no idea what it meant". I called Specialty Labs in Santa Monica and I talked with a patholgist and she told me that this meant a virus and for me to see a virologist. She would not tell me what virus. There is NO virologist here. So, another dead end but in 1997 the symptoms were not as bad and ongoing as they are now. I am trying to find the report and share the name of that test with this group.

In 1997, dental work caused facial nerve pain that was excruiating. I stay away from EPI and make sure this is not added to any anesthetic med that a DDS may give me. When I had the kidney stone removed last month, I alerted them not to give me EPI also. They were going to.

My son in law is doing well. If the surgery fails, he will have a hip replacement but we are praying that this will hold for years.

Meg, are you on antibiotics and if so, what is working for you?

Thank you again,

Macy
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-12-03 14:26

Hi Macy,

It's tempting to comb through our medical histories looking for tests that should have been done or treatments that might have helped. A biopsy is currently the only recognized definitive diagnosis for sarcoidosis and some of us have lots of symptoms but nothing to biopsy. If you've been researching sarcoidosis and you think you have it, IMO, you probably do.

The key issue here is to find a doctor willing to listen to your reasoning and work with you by ordering the D-metabolite/sACE tests first. When those tests come back elevated, he/she should be receptive to ordering the medication.

I began taking Benicar first (see my story on the success story thread) and a week later started Minocin. I have experienced significant improvement in just 3 weeks and expect to continue until all my symptoms have resolved.

I suggest that you call your GP first thing tomorrow and make an appointment. Taking action is the only way you will improve your condition.

Meg
 
 my daughter
Author: Carolyn D (65.244.151.---)
Date:   02-07-03 12:10

Hi , Trevor,

My daughter, who is 25,was diagnosed at 13 with fibromyalgia, has a lot of the same kind of pain that I have. Could sarc and fibromyalgia be related?

Thanks for everything you do!
Carolyn
 
 Re: my daughter
Author: Admin (---.vnnyca.adelphia.net)
Date:   02-07-03 12:19

Carolyn D,
That is the wrong question to ask. The correct question is "Could my daughter and I be suffering from some variation of the same immune disease"?

The answer to this is most definitely, "yes".

Fibromyalgia is not a disease. It is a cluster of symptoms which have been given a name. But there is no treatment for fibro, because there is no underlying disease. It is called a "syndrome".

You, however, have immune disease, which is based on hereditary traits. Although unlikely your daughter would have identical traits, she may be suffering from some other variation of the immune diseases.

It is very easy to find out - have her 1,25-D and 25-D measured. If the D-ratio comes out high, then you have a diagnosis, inflammation, and you can implement the solution (antibiotics).

..Trevor..
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Tammy (---.cox-internet.com)
Date:   06-12-03 17:38

Trevor...or whoever!

I too have had alot of hip and lower back pain. It even wakes me up at night! I did not have this pain until I started prednisone! It worries me that the pred may be affecting my bones like this. Especially my hip joints! In Dec. I was taking 60mg of pred with at taper, and am now on 20mg qod. I want to get off of the pred asap. I have given 2 DRs and a pharmacist I work with your info. I have not seen the Docs yet, but the pharmacist is encouraging the minocin/benicar regimen! He has read and studied this before and agrees it is worth trying. I hope this will also encourage the Drs to see it this way also. How fast is toooooooo fast to taper off pred. without causing more damage to my bones?
Thanx! ~Tammy~
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Admin (---.vnnyca.adelphia.net)
Date:   06-12-03 17:50

Tammy,
Doc can do a CPK test to make sure your adrenals start to kick back into action as you wean the prednisone. Somewhere around 5mg a day might be where he would start doing this. The CPK will drop precariously if you are tapering quickly, but at least you will be able to more intelligently wean from the steroid.

Once you get the ARB into place (at the 40mg every 8 hours dosage) it will be a lot easier to wean from the prednisone. I suggest you spend a few weeks doing this before starting the antibiotic. See what Doc thinks.

It is great your pharmacist understands the risks of the drugs he/she dispenses. Often a doctor gets so busy these days they just don't have time to read up on these things. Let's hope your Pharmacist and Doc can work together on this.

Once you have been off steroids for about 2 months I think Doc might be prepared to order an MRI (like they used in the multicenter Study) to see whether there will be any long term damage to your joints.

..Trevor..
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Tammy (---.cox-internet.com)
Date:   06-12-03 18:30

THANKS FOR THE INFO...I'LL PASS IT ON TO THE DR.
~Tammy~
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Tammy (---.cox-internet.com)
Date:   07-30-03 09:44

Hello,
Just an update on my hip pain. I went to the Dr. yesterday and we discussed how my sarc treatment seemed to be going. I told him I knew that it was going to take some time to see results, but have been feeling the usual Sarc symptoms. I told him again about my severe hip pain, and he was concerned enough that he is setting up an appt for me with an Ortho-Dr. He wants to rule out avascular necrosis. He also said it may be Sarc. To be honest I hope it's Sarc and not the other! I know I didn't have this pain before the Prednisone. The pain has been so bad that I have had to resort to RX pain meds..... I don't like taking them! His office is going to call me and let me know when my appt. is. The Ortho-Dr. is out on vacation so it will probably be a couple weeks. Thanx for listening. Have a great day!
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: ~Tammy~ (---.satx.rr.com)
Date:   08-04-03 20:59

Hello,
My appt. for the Ortho-Doc is on the 16th. I'll keep you posted.
~Tammy~
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Caroline (---.win.org)
Date:   08-04-03 23:28

Hi Tammy,

I had severe pain in my right hip. Severe enough to wake me from a sound sleep. I had great difficulty falling asleep and getting comfortable. I feared needing a hip replacement due to high dose steroids for several years.

I ate OTC pain meds like candy and I put off mentioning it to my doc until it was unbearable. He sent me for x-rays which were negative followed by an MRI, also negative. Today my hip is pain free. I also had the exact same problem with my right hand. Also, my hand is pain free. I attribute that to minocycline. I hope you are negative for avascular necrosis also.

Caroline
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Serc (---.sligo.indigo.ie)
Date:   08-05-03 17:08

I haven't taken a dose of steriod ie: prenislone in 2 years; previous to that I had been on a high dose up to or over 60mgs for 3 weeks due to a bad bronchial asthma attack. I always got pain in my neck , shoulder blades when coming down from these doses - always felt that, that area was so heavy my head would droop. However I have been taking inhaled steriods for 15 years 250mgs 4 puffs a day and I am begginging to wonder if this longterm use of preventative medicine is almost as damaging as the short course of tablet steriod. I still get terrible neck ache and rarely wake up in the morning without it, my upperbody is heavy, bulky and get awful pains in the upper rib area when in the car for long journey's. If inhaled steriods are responsible for the same necrosis, I wonder if I will ever be able to come off them, the last time my steriod inhaler was reduced to 100 mg I suffered the worst episode of asthma
and now that I have pulmonary sarc as well, I sometimes think this form of 'preventative medication' is the only thing keeping my breathing under control. Is there a way to cut these drugs out once and for all, or will I always be dependant on a drug that is certified 'non dependent'
I just turned 35 and somedays are good but other days I feel twice that age which doesn't bode well for the future.

On a non related note : Trevor would it be okay to show a copy of your research into antibiotics & Sarc ( what's posted here) to my Respiratory Nurse? I am sure she would find it interesting reading!
Regards
S.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: ~Tammy~ (---.satx.rr.com)
Date:   08-05-03 18:23

Caroline,
Thank you for the kind words! I too am praying it all works out. Having surgery would really put a kink in my schedule. I start nursing school this coming year and I want to be well for that.l That is why I am sticking with the program. I have a lot of plans and alot of living to do! I have only been on the mino/benicar for about 5 weeks. I am patiently hoping this pain will resolve by itself...with a liitle help from the mino! Thanks again for your response. Have a great night!
~Tammy~

P.S.... My appt is on the 18th not the 16th..oops!
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   08-12-03 16:54


I can tell you, I was on 80mgs of prednisone for almost a year then 60mgs before I was tapered off, I have been having hip pain and the orthopedic Doctor I have been seeing has no doubt that it was the prednisone I was taking.

So I am here to tell you it is very true what they say about prednisone. I haven’t had my last check up with him yet but did have a MRI. By what I understand prednisone will cut off the blood supply to the ball in your hip and kill it.
So take this warning seriously.

JC
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: ~Tammy~ (---.cox-internet.com)
Date:   08-28-03 21:07

Hello Everyone!

I just wanted to update y'all on my MRI results concerning avascular necrosis. The test showed NO necrosis, but did show that my problem is called Greater Trochanteric Bursisitis. I was VERY relieved to hear it was not AVN. This can be treated with some exercise therapy and special stretching of the affected area. They are also going to use a treatment called Phonophoresis. If anyone knows what exactly that is , I would greatly appreciate the info. It appears to be fairly new ... I think, and I am having trouble finding clear info. I did find some info on bursistis and it stated that one of its possible causes could stem from some sort of inflammatory disease. Hmmmmmm.... I wonder what that could be? Oh well, I must go. Y'all have a great evening!
~Tammy~
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Pat (---.trw.com)
Date:   08-30-04 10:42

I just stumbled on to this site and was wondering if anybody else is going through what I am and how do you get a Dr. to listen to you??? I'm even a nurse & have practically given up on the medical profession. I was diagnosed with vasculitis, put on Prednisone, then Methotrexate and have only gotten worse. I only started with a rash that didn't even itch and now have severe muscle pain, joint pain that moves around, still have the rash that also changes from hour to hour. I've since stopped the Methotrexate (after 7 weeks) & have weaned myself off the Prednisone. I was on the Prednisone for 4 months and since weaning off the joint pain is almost umbearable. I've been checked for Lupus, Lyme Disease, all the Hepatitis's etc. I get the blood work back tomorrow for Lyme disease. Still no answers and 5 months later I'm worse than when I started with the Dr. at Cleveland Clinic, and the University of Michigan. Anybody else out there going through this? One biopsy came back possible Lupus, one came back vasculitis, and the third biopsy was negative for both. I'm at a loss of where to go next and what to do. Calling back to Dr. office's is also a nightmare, you never get to talk to a human. I leave messages and never get call backs. Like I said I'm in the medical profession and this is just very frustrating.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-30-04 18:25

Hi Pat,

Welcome to SarcInfo. You've stumbled on to the right place. Your symptoms are very suspicious of Th1 inflammation. It usually takes a long time to get a defintive diagnosis for these diseases with standard testing procedures.

You are an excellent candidate to test for the D-metabolites. Th1 inflammation is caused by immunopathology and pathogens. In other words, the immune system because of genetic predisposition cannot effectively kill pleomorphic bacteria. The resulting chronic inflammation causes many so-called autoimmune diseases. The presence of elevated 1,25-D and depressed 25-D is a marker for this inflammation. I encourage you to get this simple blood test and then let us know what the numbers are so we can help your doctor analyze them. The instructions are here.

Information about the Marshall Protocol in CFS, RA, chronicLyme, and other Autoimmune Diseases is available at MarshallProtocol.com.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Ellene (---.17.triton.net)
Date:   08-30-04 20:25

This is so shocking to me!

In 1999, I was put on 60 mg/day of Prednisone for Pulmonary Sarc. After a year of that, the DR. added Methotrexate. I suffered along with both for 5 months, then began tapering off the Pred. I was on Methotrexate alone for another month, then demanded I be removed from it.

I began having knee joint trouble about 18 months ago (among my many other reactions, including the Sarc making itself known in my eyes and skin during the Pred treatment). Because I am 50 now, the DR has attributed it to osteoarthritus.

Now my other knee is starting, my hands have been bad for years, my lower back and my ankles hurt about 25% of the time, and my right big toe is giving me fits.

I assumed this was all the Sarc. But it is the Pred? What do I say to my DR? She is overwhelmed with my symptoms and basically is treating me for pain. As long as I wasn't in too much pain, I was willing to "hold". But I feel as if the symptoms are progressing. Is it the Sarc, or the damage from the Pred - and how do I stop it??

Thank you for your time
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-30-04 21:00

Hi Ellene,

Welcome to SarcInfo. Yes, the lack of correct knowledge about sarcoidosis is "shocking". Knee pain in not part of the normal aging process. If it were, all people over fifty would be limping around. Many doctors order prednisone freely without giving their patients 'informed consent' about its dangers.

Prednisone does cause necrosis of bones, especially joints. But joint pain is also a classic sarcoidosis symptom. It is usually due to high 1,25-D and resolves quickly when that level is reduced with Benicar. I recall ankle pain that had me taking the stairs in babysteps and toe pain. Both are gone now alone with shoulder, knee and elbow pain.

Your first course of action should be to wean off the prednisone with the help of Benicar. There are instructions in Weaning From Prednisone.

You will want to have your D-levels checked too. This will provide your doctor with proof of Th1 inflammation and persuade her to order Benicar and then minocycline. Prednisone is making your disease worse by suppressing the immune system.

You will find helpful hints on how to approach your docctor here. Your doctor can call Trevor- his number is on all the papers for physicians. There is also a medical profesional forum on marshallprotocol.com.

Let us know if you have any questions about the Marshall Protocol that are not answered in the patient tutorials, papers for physicians, links, starred threads or by doing a site search.

Meg
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   08-30-04 21:02

Hi Ellene,
It is imperative you wean from steroids. Steroids only delay the resolution of your sarc symptoms. Please read Weaning from Prednisone found here.

I understand what you are experiencing. I used to be awakened from a sound sleep due to severe pain in my hip and hand. After several months on the Marshall Protocol those symptoms slowly abated. I no longer have my sleep disturbed. A painful nodule on my hand has shrunk to almost negligible size. The pain had been so severe my physician ordered x-rays followed by MRI's and both were negative.

I am a 56 yr. old female. I thought I had arthritis. Benicar will help you in the transition off of prednisone. If you have questions not answered by the information provided in the tutorials, please ask.
Caroline
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Ellene (---.17.triton.net)
Date:   08-30-04 21:45

Thank you, Caroline and Meg!

I am sorry - I did not explain myself well (which may be one of my problems with my DRS). I am off the Pred pills. It's been almost 4 years, and my lungs seem to be doing great. (Well, I have asthma, so I do have to use my inhaler) I use Advair twice a day.

I thought it was all over. I mean I stopped the Pred almost 4 years ago - and NOW my body is falling apart?? That's why I asked if it is the sarc or the Pred. I know I was on a high dose for a long time, but could it be the Pred after all this time?

After reading a lot of this site and thinking back, I see I have had Sarc a long time. I remember the shoulder and elbow pain and thinking I was crazy. I was a ballet dancer, so I thought all the leg and feet trouble was from that. Now, as I said, the DR is trying to attribute my knee joints literally breaking down to age.

Thank you, both of you ladies, for verifying what I felt - this is NOT just aging. Something is happening. For the last 9-12 months, I have felt a progression of symptoms. I am going to fight for myself more. Thank you!
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   08-30-04 21:55

Ellene,

Many, many of us had allowed doctors to convice us that the overall symptoms caused by sarcoidosis were simply "aging." Meg is correct - normal people 50 and over are not limping around and suffering almost constant joint and muscle pain. As we have progressed through our recovery, we have clearly seen, by the resolution of these symptoms -- that they were due to sarcoidosis.

I hope you will read everything on this site and ask any questions that remain unanswered.

Belinda
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   08-30-04 22:29

Ellene,

I'm also a 56 year old female with Sarcoidosis. My 84 year old mother has less aches and pains than I do! Not to mention more energy!!

Your "asthma" could also very well actually be the Sarcoidosis. My Sarcoidosis has never shown up on a routine chest x-ray, it only showed up on a CT scan with dye looking for something else.

The papers listed at the top of the page will help you understand this disease more, and also reading the posts as the others have recommended. Printing out some of the papers for your doctor may help her as well. All of your symptoms can be treated with the Marshall Protocol. That may make it less overwhelming for her to deal with in itself.

I know you don't want to go back to Prednisone and methotrexate. I was starting to get worse while I was ON the prednisone. I weaned off of it recently. I'm on Benicar, and my doctor is deciding when to start the Minocycline.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Cathy (---.dialup.mindspring.com)
Date:   08-31-04 16:52

Lottie, I sure can relate to that . !! My 93 year old mother has no aches and pains and more energy than I do !!!!! And, gets out and about more than I do !!!!
But, I am still hopeful now that I am on the Benicar. I am feeling much better, no chest pain, no breathing problems, aches and pains very minimal. I will be going to the next phase with the Z. Please email the next phase to me. Thank you all so very much for your time, your efforts, your great contributions to all of us with Sarcoidosis.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   08-31-04 17:53

Cathy,

sigh... I'm pleased that my mother's in such good health. But, I have to admit that at times it's a bit annoying! LOL I hope to be able to "catch up" with her fairly soon.

I can't locate your email address. Are you "officially" registered? Perhaps you need to re-register with your email address.

We also need to know that you have also gotten up to the 100mg of Minocycline with litte or no herx as well as the benicar!? You need to have done that too before you go to the next phase.

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Roberta P.Tyre (---.dab.bellsouth.net)
Date:   12-09-04 16:28

I just had the bone biopsy on leg ( its in both) and I used to get large amounts of Predisone with I would have sever broncitis and at that time I ask my allergy doctor about the amount and about taking it and he said it won't hurt .But it sure did and now I am going to have knee replacement and had to do the biopsy so he will know what type of cement he will use.. I am in Pain all the time not just my Knees its in my leg bones is there any thing I can do?
Thank you , R.P.Tyre
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   12-09-04 22:53

Roberta,

Welcome to SarcInfo. I'm sorry you are having so much trouble with your joints since you took prednisone. If your doctor said it wouldn't hurt, he did not inform you adequately of the consequences and he is liable.

Hopefully, the knee replacement will help that pain. But to relieve all your sarcoidosis pain, you need to treat using the Marshall Protocol.

Let us know if you have any questions about the Marshall Protocol that are not answered by the patient tutorials, links, papers for physicians or threads on this site. You can also find easy to understand explanations and support on our sister website, marshallprotocol.com.

Best,

Meg

Meg Mangin, R.N.-moderator-sarcoidosis-nerve, skin and joints; started MP 12/02; average B/P 80/50; in phase three;still herxing mildly with 90% symptom resolution
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Shawn (---.usask.ca)
Date:   03-31-06 06:32

I recently have been having fairly bad pain in my right hip. I've been on prednisone for close to three years. When I went to my family doctor he told me about the damage that predisone could do to my hips. I had an xray done and it shows that both of my hips are damaged. I have to get a bone scan too. I've been weaning myself off of prednisone because I can't get into see my specialist for over a month. My lungs feel alright so I don't think I need to be on this stuff anymore. I'll take my chances with a relapse of my sarcoidosis.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   03-31-06 19:54

Shawn,

Welcome to SarcInfo.

I’m glad that you understand how Prednisone can cause problems. And, I’m glad that you have found this site.

We now know that Sarcoidosis is caused by Cell Wall Deficient (CWD) bacteria, which have learned not only how to avoid the immune system, but to live within the very cells of the immune system that are supposed to kill them. Sarcoidosis does not go away on it’s own.

Sarcoidosis is a systemic disease that can affect any and all organs in your body, not just your lungs, and while you have been on Prednisone, the CWD bacteria may now be in other areas, and as you wean from Prednisone, you may find that you have other symptoms showing up that are indeed related to Sarcoidosis.

People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

The Marshall Protocol is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

The Marshall Protocol -- simple explanations

There is information at our sister site MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS.

You can start learning by reading the papers listed at the top of all SarcInfo pages. I hope that you will continue to read both here and at our sister site, www.Marshall Protocol.com.

The next time that you have blood tests done, you should have your doctor order the D metabolites tests and other tests for inflammation as noted here... D METABOLITES TESTS. Read the information about the proper handling of the specimen. Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN as soon as it is "spun down", and then kept frozen while in transit and until testing is done.

When you get the results, please obtain a copy, and post the actual numbers from the results on our sister site, Marshall Protocol.com in the thread named ”Preliminary test results”, and we will help you evaluate them for your doctor. Please read the information which is listed in the first post “WHAT to INCLUDE in your preliminary test result reports”, and include the requested information along with your results. You will be starting your own thread in that section. You can let us know here on SarcInfo if you have any problems starting your own thread there.

And, don’t accept the term “normal range” for the results, you want the actual numbers. Even what is considered “normal”, or even low, can indicate Th1 inflammation. This will help to give you an idea of how much inflammation that you have going on in your body.

This document may help you to wean from the Prednisone, and you should discuss it with your doctor.
WEANING FROM STEROIDS

You will find as you read about the Marshall Protocol (MP) that it is important to avoid vitamin D in foods, and supplements. The most obvious sources of vitamin D are eggs, fortified dairy products, fish, fish oil, and liver. You should also read the packaging on products to be sure that there is no vitamin D added.

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

You will also learn of the importance of avoiding sunlight, and bright lights.

I will be sending you additional information in an email. Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury


Shawn,

The email that I sent you was returned. Only the administrator (Dr. Marshall) and the moderators can see your address. Please check and make sure that you have given us the correct email address to send you additional information to.

Thanks! Lottie
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Shawn (---.usask.ca)
Date:   04-05-06 07:41

Thanks for the information. I'm not weaning myself off of prednisone. I'm waiting to see what my specialist says. I put my correct email in my profile.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   04-06-06 03:46

Shawn,

Thanks for correcting your address. I have sent you the additional information.

Just want to make sure that you are aware, that if you do find that your physician will help you with the MP, you will need to wean off of Prednisone prior to starting the antibiotic portion of the protocol.

The ARB, Benicar, can help you to wean off of Prednisone by heloping to reduce inflammation that will occur as you wean off of Prednisone.

You may want to have a copy of the weaning document to present to your physician.

Hope all goes well when you see your specialist.

Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Shawn (---.usask.ca)
Date:   04-19-06 13:13

My hip is still sore when I put weight on it but not as bad as it was. I don't know if this means it's getting better or not. I go for the bonescan next week. I just want to get it over with, and find out what is wrong.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   04-20-06 00:43

Shawn,

Have you been reading about the Marshall Protocol? Have you been able to talk with your doctor about going on it? Remember, the Marshall Protocol is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

As long as you are on Prednisone, your Sarcoidosis will only get worse, along with the damage that the Prednisone itself is causing.

It is a lot easier to wean off of Prednisone with the help of Benicar, which is one of the medications of the MP. It helps keep the inflammation down that will occur as you reduce the Prednisone, and it helps protect the organs in your body from damage.

Let us know if you have any questions understanding, and helping to get your doctor on board with the Marshall Protocol (MP).

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Frank Garcia (---.nmci.navy.mil)
Date:   04-24-06 13:55

Currently diagnosed with Sarcoid. doctor says I am Asymtomatic and usuall people who are Asyptomatic tend to stay that way. I have swollen glands in the chest, abdomen and pelvis. The largest at 1.9 CM. No evidence of SARC in the eys or heart. However pain in my hip is the only problem I am having. Could the pain be related to Sarc? I have been through all types of test, blood tests (Berylliosium, awtg results) bone marrow biopsy, all good. Will this disease progress and eventually affect other organs?

Frank
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   04-24-06 21:46

Frank,

Welcome to SarcInfo.

I suspect that many doctors may not see the patient years later when they do become symptomatic. The patient may have moved, changed doctors for insurance reason, etc. Also, many doctors don’t have a lot of personal experience with or treating patients with Sarcoidosis. My doctor has two patients with Sarcoidosis. Myself and one other.

Sarcoidosis is a systemic disease that can affect any and all organs in your body. And generally, when a patient with Sarcoidosis has “other” symptoms, they are related to their Sarcoidosis. And, the fact that you have swollen lymph nodes throughout your body indicates to me that you could very easily have it in several areas. The symptoms don’t start until the organs are overwhelmed, and damaged by the CWD bacteria. A biopsy won’t show Sarcoidosis if they missed getting any of the granulomas when they took a sample.

Cardiac (heart) Sarcoidosis is VERY difficult to diagnose, and it is very likely that more patients have it without knowing it. It isn’t until it is advanced that it shows up “as Sarcoidosis” on an echocardiogram. Cardiac Sarcoidosis is diagnosed most often during an autopsy. At his autopsy, it was learned that the NFL player Reggie White, died as the result of Sarcoidosis involvement with his lungs and heart.

We do now know that Sarcoidosis is caused by Cell Wall Deficient (CWD) bacteria, which have learned not only how to avoid the immune system, but to live within the very cells of the immune system that are supposed to kill them. The Marshall Protocol (MP) is the only treatment currently in use that can help your immune system to kill the CWD bacteria. The standard treatments such as Prednisone and other immunosuppressants will only allow the bacteria to flourish, and multiply, without anything to kill them.

Joint pain is only one of many symptoms that a doctor may not realize is related to Sarcoidosis. You may have many symptoms of Sarcoidosis that you don’t realize are related to your disease. People with a Th1 disease, of which Sarcoidosis is only one, are unable to regulate the production of vitamin D. If you look at the list of HYPERVITAMINOSIS-D SYMPTOMS you may recognize many of the symptoms on the list. (hypervitaminosis D refers to an excess of 1,25D, not the 25D that most doctors test for when they test for “vitamin D”)

The next time that you have blood tests done, you should have your doctor order the D metabolites tests and other tests for inflammation as noted here... D METABOLITES TESTS. Read the information about the proper handling of the specimen. Be SURE THAT THE LAB KNOWS THAT THE 1,25 D SAMPLE MUST BE KEPT FROZEN as soon as it is "spun down", and then kept frozen while in transit and until testing is done.

When you get the results, please obtain a copy, and post the actual numbers from the results on our sister site, Marshall Protocol.com in the thread named ”Preliminary test results”, and we will help you evaluate them for your doctor. Please read the information which is listed in the first post “WHAT to INCLUDE in your preliminary test result reports”, and include the requested information along with your results. You will be starting your own thread in that section. You can let us know here on SarcInfo if you have any problems starting your own thread there.

Don’t accept the term “normal range” for the results, you want the actual numbers. Even what is considered “normal”, or even low, can indicate Th1 inflammation. This will help to give you an idea of how much inflammation that you have going on in your body.

I hope that you will do more reading about Sarcoidosis and the Marshall Protocol (MP).

There is information at our sister site www.MarshallProtocol.com about diagnosis and the standard treatments of SARCOIDOSIS.

And to help you get started learning about the Marshall Protocol.
The Marshall Protocol -- simple explanations

Most of those on the MP have found that our Primary Care Physician is generally more open to the MP than specialists are.

SUGGESTIONS TO GET YOUR DOCTOR ON BOARD WITH THE MP

I will be sending you additional information in an email. Let us know if you have any questions about implementing the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Shawn (---.ss.shawcable.net)
Date:   05-01-06 09:54

The results of my bonescan show that I don't have avascular necrosis. There are problems with my pelvic bone. The doctor says it looks like I'm recovering from a fracture, but I don't remember breaking my pelvic bone. I have to get another xray.
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   05-01-06 23:26

Shawn,

That is good news that you don’t seem to have avascular necrosis.

Have you had a bone density test? A high 1,25D associated with th1 inflammation (such as Sarcoidosis) can cause osteoporosis.

I hope that you will work at finding a doctor who will help you with the Marshall Protocol. And that you still intend to get off of the Prednisone.

Keep us informed as you learn anything.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Shawn (70.64.161.---)
Date:   05-04-06 04:32

I just found out that I have fractures in my pelvis due to osteoporosis caused by prednisone. They are putting me on Novo-Alendronate which I have to take once a week. Would osteoporosis be confine to one area or would I have it in all my bones?
 
 Re: ** Hip, Joint, Shoulder pain?-Steroids? Read This NOW
Author: Lottie (---.proxy.aol.com)
Date:   05-05-06 03:25

Shawn,

I am sorry to hear that. It must be painful. You could have it in all your bones, but it doesn’t mean that you do.

I’m sorry for the delay in responding, there was a technical problem with the SarcInfo server yesterday.

Another factor to consider is that at levels above about 42 pg/ml, 1,25-D (which is generated by Th1 inflammation of Sarcoidosis) begins to stimulate bone osteoclasts (http://tinyurl.com/dp7a9), causing bone to be resorbed (dissolved) back into the bloodstream. Not only does this lead to osteoporosis, but also to calcium being deposited into soft tissue of the body, including the lungs, breasts, muscle bundles (Fibromyalgia) and the kidneys (where it forms kidney stones). A Review - Vitamin D and Calcium in Sarcoidosis

You may want to seriously consider beginning to avoid sunlight now, which is also part of the Marshall Protocol. It may help by reducing the production of 1,25D, which will help to lower your 1,25D levels. Doing so may also help you start to feel better sooner.

THE EFFECT OF SUNLIGHT/DAYLIGHT AND BRIGHT LIGHTS

The effect of light on the brain (amygdalla)

AVOIDING SUNLIGHT and BRIGHT LIGHTS

INCIDENT RADIATION TUTORIAL

Don’t forget that you also may find that you will start to feel better by avoiding vitamin D in foods, and supplements. The most obvious sources of vitamin D are eggs, fortified dairy products, fish, fish oil, and liver. You should also read the packaging on products to be sure that there is no vitamin D added.

FOODS TO AVOID

Testimonials to the need to avoid ingested Vitamin D

FOOD TIPS

Don’t let them talk you into taking vitamin D supplements of any kind. It will not help your osteoporosis. It will only help the Cell Wall Deficient (CWD) bacteria in their production of 1,25D. For a person with Sarcoidosis, taking vitamin D is like adding fuel to a fire.

I know that you want to get off of the Prednisone. Benicar which is one of the medications on the Marshall Protocol (MP) can help protect your body from the inflammation that will occur as you wean off of the Prednisone.

WEANING FROM STEROIDS

Please read more here about the Marshall Protocol, and let us know if we can help you implement the MP.

Lottie

*MODERATOR* Dx- Sarcoid 1999 Heart, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25D 48, 25D 17) (May 05-1,25D 35, 25D-below 5) Pred x5yrs- now off! 5/19 Benicar 10/11 Mino, 1/24/05 modified phase 2, 2/2/06 Phase 2 - Worked as RN until back injury
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Historical perspective on Sarcoidosis:


  1. The John's Hopkins Vasculitis Center: Prednisone Side Effects (incl. PHOTOS and PHOTOGRAPHS)
  2. Steroid-Treated patients Have higher risk of Cardiac problems
  3. "Evidence Growing That Inhaled Steroids, Like Steroid Pills, Can Cause Bone Loss"
  4. "Corticosteroids contribute to the prolongation of the disease by delaying resolution"
  5. "No data to suggest that corticosteroid therapy alters long-term disease progression"
  6. Cochrane Review - "Oral and Inhaled Corticosteroids have no discernible effect on lung function"
  7. Prednisone Improves Symptoms but not Lung Function in Sarcodiosis
  8. There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage
  9. Clinical Guideline For Treatment Of Arthritis Pain
  10. Angiotensin II receptor on BALF macrophages from Japanese patients with active sarcoidosis

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Sarcoidosis

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