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 The material here provides useful background, but much of it is now out-of-date.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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 Joint Pain & Nodules
Author: Caroline (---.win.org)
Date:   05-05-02 20:15

Hi, I noticed in a post, Mona mentioned joint pain and nodules. I have pain in my right hand and developed a nodule on the index finger knuckle. Sometimes that entire area will hurt so much as to wake me at night. My PCP sent me for x-rays but nothing out of the ordinary.

I've read that sarc favors the small bones in the hands and feet. Also that the granulomas usually do not show on x-ray but do by MRI. Not sure where I read either comment. I saw my Neuro this past week and when I mentioned the problem he said it's because the disease is active right now.

Update on my treatment for neurosarc. The solumedrol (methylprednisone) IV's did not help. Next i will be trying cyclosporin. Had a hip X-ray since that pains me too. Hope all the prednisone didn't 'do it in' and it's related only to sarc and not necrosis of my hip bone.

Hope you all had a great weekend......Caroline
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-05-02 21:09

Caroline,
Have you any idea what Cyclosporin is and what it can do to your body? RXlist has the FDA's approved description of this drug and its effects. Hit the blue tabs on that page to look at each of the issues, particularly "Side Effects, Drug Interactions" and "Warnings & Precautions".

Look up any unknown words like "nephrotoxicity" in a medical dictionary. "Hepatoxicity" is not in that dictionary. It means "the property of exerting a deleterious effect upon the liver cells".

A good summary of the poor therapeutic experience using these drugs is "Central nervous system sarcoidosis—diagnosis and management ". I personally disagree with the rational behind giving anti-neoplastic agents in neuro-sarcoidosis and do not endorse this study in any way, but you can see that of the 68 patients being discussed, three were given cyclosporin and only one "was associated with improvement".

I could not find any clinically useful reports about this drug being effective against joint nodules. Nevertheless, it could be that this drug might be a lifesaver for you. You should ask your doctor why he is recommending it.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: mona (---.rasserver.net)
Date:   05-07-02 10:27

Hi Caroline.
I read your post about the nodules. I have gotten small painful red bumps on my knuckles and sometimes under my fingernails. I thought that I had a papercut, but it was one of these tiny red bumps. They are annoying, but do go away. I also get them under my skin on my shins and have gotten e. nodosum, which has started under the skin and then erupted above the skin, looking like a small hive. Cortisone cream and a newer cream Protopic help.
Regarding cyclosporin, I would heed Trevor's warning and not take it. I took it about 10 years ago. My feet hurt so much that I couldn't walk. How about trying tetracycline? If your just loking for relief from the skin nodules try the protopic and prednisone cream.
Have you had bone density scans? That should give you an idea if the prednisone has affected your bones. There is also a vascular necrosis to worry about from taking prednisone. Let me know. Good luck! Mona
 
 Re: Joint Pain & Nodules
Author: Caroline (---.win.org)
Date:   05-07-02 17:19

Howdy, I am going to be taking cyclosporin for 'all' the symptoms I have with neurosarc, not just for nodules. I have had oral steroids on and off for a number of years to save my vision. Again in large doses when I couldn't breath. I lastly had Solumedrol IV's beginning in December until about two weeks ago for all symptoms.

My neuro hopes to alleviate some of the symptoms by the Neoral (cyclosporin). I seem to be in the fast lane lately that is going downhill. I would be happy with just a leveling off. The CNS involvement is scarry to say the least. Reading the abstract lends some credence to that.

The nodules were more of aside. My left hand and forearm are pretty numb. My legs don't cooperate and I am right handed, so having such pain in my right hand develop lately has been a final insult. That was the last 'good' limb!

Does anyone else have balance problems also? I always feel slightly off balance and occasionally fall. I'm sure that sometimes people think I am drunk.

Caroline
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-07-02 19:12

Caroline.
Unilateral involvement is characteristic of the inflammation of neurosarcoidosis. I am assuming that you have had PET, MRI or CAT scans to try and identify the severity and location of the neural inflammation.

Three questions.
1. What is your serum Angiotensin Converting Enzyme level? (an indication of systemic inflammation and your ACE allele)
2. What is the level of your plasma 1,25 dihydroxyvitamin D3 (an indication of systemic hypercalcemia)
3. When did you last have gram-negative antibiotics administered and what antibiotic was it? (is there a possibility of neural bacterial infection)

Actually, that is 4 questions. Or 5 questions.
It is often easy to forget the basics

Clearly the treatment you have been getting has failed to halt progression of the neuro symptoms. It is probably time to try some lateral thinking, and I guess that is why you are posting here

At the recent Californian Sarcoidosis Network Foundation conference, Dr Steven R Hamilton, Director, Neuro-opthalmology unit, Swedish Neuroscience Institute, Seattle, WA, showed some slides and discussed some case histories not dissimilar to what you are describing. Have you thought about maybe finding a clinician who has successfully treated some neurosarcoidosis cases? You could seek their advice as a "second opinion". Most doctors only see one or two sarcoid patients in a lifetime, and have a limited amount of experience sucessfully dealing with the syndrome. Dr Hamilton, however, has made his career path in Neuro-opthalmology research.

Keep smiling,
..Trevor..
 
 Re: Joint Pain & Nodules
Author: Cher (144.138.225.---)
Date:   05-07-02 21:13

Hey Caroline,
I too have had the balance problems, If i bend over to pick something from the floor i often can't get up without falling over. I have blackouts, blurred vision, speech dysphasia, numbness to my hands, feet, legs, arms & even facially. The only visible nodules I have are behind my ears & at the base of my skull so they aren't really visible at all since my ears or my hair cover them. Every CT scan I have had have clearly shown all the internal nodules on my lungs etc etc. Hope it helps to know u aren't alone. Cheers & Stay Positive ... Cher
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-07-02 21:36

Cher,
I was referring to CT scans of the brain, on which it is often possible to see, and guage the severity of, the unilateral inflammation which is characteristic of neurosarcoidosis. MRI scans increase the contrast between healthy and inflamed tissue, and PET scans can show if there is reduced neural activity in any areas of the brain.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Mona (---.rasserver.net)
Date:   05-07-02 23:40

Hi Trevor,
Does that mean that if I had a negative MRI I need a CT scan and a PET scan?

Caroline,
Predforte eye drops, which are prednisone drops, should suffice to fight inflammation in the eyes. Mona
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-08-02 05:36

Mona,
An experienced craftsman knows how to use his tools to best advantage. If Dr Om Sharma says that the MRI shows no neural inflammation typical of neurosarcoidosis, then you can rest assured that there is no neural inflammation typical of neurosarcoidosis.

In any case, the MRI is usually the instrument of choice. Although the PET scanners can show actual brain metabolism they are expensive and clumsy to use. The CAT (CT) scanner is an X-ray device, and usually gives less contrast than the MRI.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Caroline (---.win.org)
Date:   05-08-02 21:41

My ACE level when I was hospitalized with difficulty breathing was 31, I am told this is normal. I was last tested for calcium about two months ago. I was told that it was also normal but I don't have the numbers. I had the bacteria check a couple times and that is ok, again no numbers.

I use pred forte for my eyes and also have had kenalog injections in the right. hmm, PHUN! seriously it wasn't as bad as it sounds, they numb it up pretty well.

Of my MRI(s) one was with contrast and one without.

PS to Cher....seems we have much in common with our CNS sx. Caroline
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-09-02 06:49

Caroline,
I need to know if the ACE test result of '31'was in "Units", or in "nmol/ml/min". What was the 'normal' range for the lab you used? In addition, was your ACE Genotype identified prior to this diagnosis of 'normal'?

I wrote a message on Tuesday explaining why ' the bacteria check' is of little use in sarcoid patients. Have you had been treated recently with an antibiotic, and which one was it? The thinking behind this question was related to reducing the possibility that soft-tissue bacteria might be contributing to your problems.

..Trevor..

ps: info on the Vitamin D hormones is the the thread "if you have sarc, stay out of the sun".

 
 Re: Joint Pain & Nodules
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-10-02 09:37

Hi Caroline:
I too have joint pain and nodules all over and have had Sarcoidosis for 2 1/2 years to date that was diagnosed. I believe I have had Sarc. longer than this time frame.
I have soft lumps that are tender to the touch....yet they have appeared on flat areas like the calf of my leg. I have a large soft lump on the right hip area. I have asked my doctors what are these and what has caused them and they don't know. I believe they are from Sarcoid but I am not sure. Any comments?
Thank you.
Caroline
 
 Re: Joint Pain & Nodules
Author: shelagh (---.proxy.aol.com)
Date:   05-10-02 10:59


Recently noticed small hard lumps on both index fingers below the nail - only sore to touch, not painful otherwise. Are these granulomas?
 
 Re: Joint Pain & Nodules
Author: Caroline (---.win.org)
Date:   05-12-02 11:48

In reply to the lump's (ugh, what a word--conjures up all sorts of pretty thoughts). I have a noticeable lump on my right index, first joint in my hand. It is painful as are the next two joints but no lumps or nodules. The mid area is a bit noticably enlarged. My left hand hurts in the same vicinity. Both areas are painful to the touch and sometimes very painful for no reason.

I received the results of my hip x-ray and it is negative. Now I wonder why it hurts so much. It is painful during the day and even laying in bed. Could it possibly be sarc in the hip joint? Neuro says he will order an MRI if it continues to be painful.

Caroline
 
 Re: Joint Pain & Nodules
Author: mona (---.rasserver.net)
Date:   05-12-02 17:38

Painful bumps on the shins and fingers can be erythema nodosum, which is charasteric of sarcoidosis. They start on the shins as bumps, almost under the skin, then turn red and hard. They then ussally turn purplish. Prednisone, hydrocortiisone and protopic creams usually get rid fo them. I've had them too many times. When they are present you may feel tired or feverish. I got mine first from an alergic reaction to some medication during general anesthesia. I think that my nephew is also starting to get them some times. hope this helps, Mona
 
 Re: Joint Pain & Nodules
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-12-02 17:57

I suggest you look at the latest research from France concerning the skin manifestations of sarcoidosis Minocycline,Tetracyclines cure sarc skin lesions.

The concomitant fever is probably associated with the release of chemicals, including Angiotensin, from the inflammation.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Cher (144.138.225.---)
Date:   05-14-02 09:51

Caroline,
I totally agree that you & I have very much in common as far as our Sarc goes. It's not often that I find someone who has so many similarities as both u & I do. Do you have much lung involvement as well? I don't know which is worse ... the pain & discomfort of not being able to breathe ... or the multiple problems that go with the Neuro problems. I suppose if I had the choice I would stick with the Pulmonary because at least I can speak, walk without falling over etc. If you ever want to just talk don't hesitate to e-mail me at the above address.
Cheers ... Cher
 
 Re: Joint Pain & Nodules
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-14-02 09:58

To Trevor:
I understand that Tetracycline etc. can help with skin Sarcoidosis.....but what about the soft under the skin lumps that have formed? I have them on an ankle, several on knees, one on calf of leg and one big soft lump on right hip....? My internist doesn't seem alarmed by them but could they be from the Sarc.?
I feel better when I know what things are.....
Caroline
 
 Re: Joint Pain & Nodules
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-14-02 10:56

Caroline, Sarcoid patients have an over-active immune system. This tries to reject things that it sees as 'foreign' by encasing them in granuloma (at the microscopic level). What the resulting inflammation looks like at the surface (skin) will depend on what caused the 'foreign' material to be in your body in the first place.

The tetracyclines attack bacteria that can live in any 'soft tissue'. This includes subcutaneous tissue, and also includes the lungs, portions of the brain, and other organs. They are not just indicated for skin lesions, although the French researchers quoted in message 1 (above) found them to be very effective with the skin lesions of the patients under their care.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: FRANK H. MORING (---.mcn.bellsouth.net)
Date:   05-17-02 09:07

Hello Carolyn,

I have posted on this board before but it seems I cannot get anyone o answer me so I will try again.

I saw your post on joint pain and noeules. I think I remember somebody post a message about nodules on the end of each index finger just under each nail. That is what I want to talk about and I hope you or somebody will answer me.

About 42 years ago I was diagnosed by way of a scalene biopsly with puliminary sarcoidsis. We monitered it forabout eighteen months and after it went away my Physician told me "it is gone and you do not have to worry about it anymore." years later as something kind of weird happened I would ask if Sarc could cause it. I was always told I no longer had sarc.

As I looked back, I realize I had this mess before it was diagnosed because my eyes would burn especially when I was outdoors during cold weather. The real problems started when I was in the hospital with a kidney stone. I would doze off and later open my eyes and see two light fixtures above my bed. They would be as much as four feet part, then they would slowly float back into one image. About two weeks later I was at a funeral and could not get out of the cemetary because I saw so many grave markers. That was two of everything. The next day my Physician gave me glasses with prisims. I asked about Sarc and was told me it could not cause that. I can remember everything so well, I was so tired I actually I wanted to die.

Then a foot problam developed. It felt like about a million pins were sticking in the bottom of my left foot and the pain was so great, morphene would not relieve it. You would think it would stop hurting when you went to bed but then it hurt more. My Physicn had me try several different shoes with plastic heel cups, elevated heel, everything including hushpuppies but nothing helped. I honestly considered taking a shotgun and blowint that foot off. Steriods did no good.

I could hardly walk so they surgically removed the planter fascia which did no good. I lost weight from 200 lbs down to 160 and that did no good. Eventually I resigned from my job with Sears, returned to school, became a CPA so I could stay off my feet. Sometime during the past fifteen years it quit hurting.

When those kidney stone started I think I produced around 50 over two years or so. Now I am down to one about every ten years. Everybody was so kind; they thought I was just after drugs. Why would I do that? Drugs did practically nothing. But still I almost had to beg for them.

My calcium level was upreal high and again I asked about Sarc but they said even if I did still have Sarc, it could not cause high calcium level. One night I was in the hospital and passed five stones I recovered. All were Calcium Oxilate.

As the stones began to slow down I developed bone and joint problems. The cartledge was removed from both knees, then I had a lumbar fusion, then a cervical fusion and two years ago I had bi-lateral knee replacement.

Currently I have a cyst on each foot. Both are in the same identical same place. I have a small nodule of some kind in each ringer finger, both of those are in the same place. They are on the end of the finger, just under the fingernails. I have a cyst behind the middle finger on my left hand and I had the same thing in the same place on my right hand. This seems to be a bit strong to be just coincidental. I also have a large cyst on the inside of my right wrist but nothing on the left yet.

Those things on the ends of my fingers look like small warts. I have had them surgically removed five times but they came back as the incisions were healing.

Somebody may think my memory is a bit off because I am 68 years old. My wife and school mates who are still living will tell you I can remember the names of everybody in my first grade class and that was only 62 years ago.

I have had no medical training but my wife was a Registered Nurse when we married 46 years ago. I suppose I picked up medical terms from her. I did not pick up the ability to spell from her.

During the last three months I have been bothered by a severe rash. Some on the back of my head but primarily on my hands and arms. It itching is bad it actually hurts. The large knuckles on both hands, the skin will change color, become thick and then peel. I have taken two rounds of pred and used two tubes of a cream. It is better but not totaly clear. It is disclored and darker.

I would like to know if amy of you guys out there have experienced anything like this. Or have you heard of anybody else who may have experienced these symptoms?

Please somebody read this and answer me. My office e-mail is
fhmoring@bellsouth.net. I sould love to join your group.
 
 Re: Joint Pain & Nodules
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-17-02 10:31

Hi Frank,

I gotta say - I love your sense of humor! In response to your questions, I can only tell you what I've experienced.

Yes, I've had the same vision problems, which you described so well. Of course, the double vision and bluriness never happen when you are at the doctor's office. The heel and foot problems I have had, too.

The good thing is that we are finally affirming that these are related to sarcoidosis.

Hope you get some more answers. Keep that sense of humor.

Belinda
 
 Re: Joint Pain & Nodules
Author: Caroline (---.cu27.vnnyca.adelphia.net)
Date:   05-17-02 11:46

Hi Frank,
You have really had a full plate withyour sarc experiences. It certainly sounds all related to sarcoid to me but I am not a doctor. I have read that once you have sarcoid that you have it for life. If not currently having symptoms it only means it is in remission. The remission can last a brief time or any longer time period including the rest of ones life. Someone please correct me if I am wrong here.

Since I posted originally of my problems in my right hand, I am now starting to experience what I think are the beginnings in my left. My right arm muscles and into my elbow joint are now feeling sore as well. The right hand nodules continue to be very painful at times. I can either experience continual dull pain, to sharp 'take your breath away' stabs of pain.

My feet either feel like pins and needles, frozen as tho I had just walked barefoot in the snow or just plain hurt. I had taken neurontin prescribed by my neuro but it made me feel drugged. I weaned off of it and now the pain is back to being unbearable at times, so I am going to try it again with a slower build up of dosage. I completely understand your thoughts of blowing off you foot! It hurts badly at times. I differ from you in that laying down and putting my feet above my body does offer some brief relief. (I lay down on the loveseat and put my feet on the opposite arm).

My right knee hurts, but not as bad or continually. My right hip also is quite painful at times. I worried that too much prednisone had put my in line for a hip replacement. I had a recent x-ray and it appears to be fine. A relief to me but the pain is still there.

It is my understanding that all sarcoid patients need to be mindful of their calcium levels and also that of vitamin d, particularly D3. Trevor has written much about this. Look at the previous messages and you will find many posts about this. I am still trying to understand how it all works though.

I too have so many symptoms and frustration at trying to get around even in my own home. It seems many docs pooh-pooh any suggestion that a certain symptom is sarc related, it is VERY irritating to say the least.

Take care and know that there are many folks here that truly understand what you are going through.

Caroline
 
 Re: Joint Pain & Nodules
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-17-02 12:04

Carolyn,
"Remission" is not a concept I think is useful. It is better to understand that a sarc patient's body will react to its environment from time to time by becoming symptomatic. The syndrome never ever really goes away, it is just not causing obvious problems.

"Remission" originally came from the reading of Xrays, when the Xrays cleared it was assumed the patient was "in remission", usually without any concern for other symptoms that the patient might be suffering, and usually without too much consideration for the effects of any drugs which had been given in order to get the desired change in the Xray presentation.

Keep smiling,
Trevor
 
 Re: Joint Pain & Nodules
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-17-02 12:09

Frank,
I did leave a response to your previous message. Click here to access the reply (it is near the end of the page)

You have answered the question about the kidney stones, but I am still intrigued about the medications and/or blood glucose control.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Cher (144.138.225.---)
Date:   05-18-02 07:35

Hey everyone,
I've just realised that I have had a cyst at the base of each thumb for many years now but never did I relate it to Sarc. I also had one in my breast which I had removed because of the location & the specialist was not sure of what it was until biopsied. I don't think I've ever really had any visible nodules, mostly they are on my lungs & my brain apart from one behind my right ear & the two i just talked about in my thumbs. It really is hard to know what is part of Sarc & what is just general wear & tear lol. Oh yeah ... occassionally I have swellings in my groin, under my arms & in my neck back & front. They seem to be simialr to swollen glands as in Glandular Fever (MONO).
Luckily this Phorum helps us all to know that we are not abnormal lol.
Cheers & stay positive ... Cher
 
 Re: Joint Pain & Nodules
Author: mona (---.rasserver.net)
Date:   05-18-02 09:44

I think I posted something about red bumps under fingerails, and on the shins. If you have any of these painful red bumps look up erythema nodosum. It seems to come with sarc. I think that Trevor mentioned it can sometimes be treated with tetracyclines. It also seems to respond to prescription cortisone cream and Protopic cream. The bumps take a very long time to go away. Usually when these bumps appear you may also experience fatigue and low grade fever.
I also have been plagued by vision problems. I have had 22 eye surgeries due to uveitis, cataracts, glaucoma and failed cornea transplants. Sarc seems to cause one problem that then goes on and on! Mona
 
 Re: Joint Pain & Nodules
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   05-18-02 16:58

Trevor:
I have my ACE level checked regularly but everyone mentions the levels for Vit. D and C. What tests are necessary to have these levels tested and what would be normal or not normal?
Caroline Mc
 
 Re: Joint Pain & Nodules
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-18-02 17:54

Caroline, the following two threads deal with the issues of ACE and Vit D measurement. I know of no useful information relating to sarc activity that you can get from measuring Vit C.

Useful Blood Tests for Sarcoidosis

ACE measurements ain't so simple...

The normal values are supplied by the lab that does the measurements. You must get the raw values from the tests, and compare it with raw values for the 'normal' range provided by the lab. remember that being at the top or bottom of the 'normal range' is not necessarily 'normal'.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Diane (---.proxy.aol.com)
Date:   10-11-02 23:34

Hi All!
Is there any articles on sarcoid and it's relationship to arthritis. I know there is. Just point me in the right direction. I am having problems with my knees now. Any info would be appreciated Diane
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-12-02 13:36

Diane,
Actually, there are very few studies covering the overlap between arthritis and sarcoidosis.

The reason for this seems to be the way that Medicine has specialized into different doctors treating orthopedic and pulmonology issues. It's silly really, but there is virtually no interchange between the specializations.

Endocrinologists can tell you that the same inflammatory mechanism is present in Rheumatoid Arthritis and sarcoidosis - they both are due to activities of blood cells called 'macrophages' and the cytokines (chemicals) that the macrophages secrete are therefore very similar in both disorders.

The hormone 1,25-dihydroxyvitamin-D is present (in excess) in both conditions. In Arthritis much of the 1,25-D stays in the Synovial fluid around the joints, and it does not enter the bloodstream to the extent it does in sarc. (click on the bold text in this paragraph to get more info on each subject).

So it is important to get your D metabolites tested in both conditions, and to keep your 1,25-D in the 20-30 pg/ml range.

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   10-13-02 10:29

Dear Caroline:
We have the same name and same symptoms.
I had been on PRednisone for two series. Once for 9 months duration and another for over 5 months. While on the drug I fell several times and I think because of the P. drug I had tears in several ligaments, muscles and tendons.
The MRI's show the tears and nodules (they say these nodules are just arthritis) and because now of the Vit. D 3 levels I had done recently and they were high and also the ACE level was high...90, the doctors are coming around to believing that the Sarcoid is active not just in my lungs but elsewhere.
I now face 3 surgeries......and yet I hesitate to have any. With this disease; I am unsure what to do. The shoulder surgeon says yes and the hip surgeon says wait...to try P.T. once more (although I have had two series of P.T. with no relief, instead more pain).
I log on to this forum, hope to get some answers, and just keep on truckin along.
Caroline McGuirl
 
 Re: Joint Pain & Nodules
Author: onlyalexa (---.ph.ph.cox.net)
Date:   10-16-02 15:10

Oh man, I have those little bumps all over my legs and arms. Hands and feet too. I have red spots under the skin on my shins that look like red birthmarks, Prednisone made those stop showing up but the bumps are still all over my arms,legs,hands and feet. You can barely see them but you can feel them.
I have a few hard brown spots that are raised on my arms and legs and Butt. They never go away. When I was dxed in 1990 I had red spots all over my joints that soon spread everywhere and I had a few purple spots too. I have only one purple spot now on my thigh.
The sun will make anything worse in the skin. I stay out of the sun as much as possible. If I am in too long even a few short mins I will get more bumps. I used to love to get a tan in my younger years. No more of that!!!! The sun also makes me have headaches and tired and heart pound.
Alexa
 
 Re: Joint Pain & Nodules
Author: Caroline (---.win.org)
Date:   12-09-02 08:05

Hello,

I might have mentioned the pain I have in my right hip. Sometimes it is difficult to get comfortable to sleep. Tylenol helps sometimes but does not alleviate the pain totally.

I was afraid of needing a hip replacement, not so much for the procedure itself but I have great difficulty walking and the p.t. after would be exceedingly difficult. I took a lot of prednisone for quite sometime not knowing how harmful it was.

Last week I had x-rays which were deemed negative. My doc then sent me for an MRI. I received the results this morning.....negative but effusion. Is Effusion the same as inflammation? To me that says granuloma? Am I way off-base here in my thinking?

Caroline
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   12-09-02 08:15

Caroline,
Always use the online dictionary to look up medical words. Here is the word "effusion"

Effusion is not granulomatous inflammation, it really indicates weak tissues. Which is probably the result of your using Methotrexate (which stops new cells from forming to regenerate and regrow old tissues). Ask Doc about it.

Hard to diagnose the hip. Usually it is a result of damage from prednisone, as you indicate. Again, the MTX would not be helping any regrowth or regeneration. A high level of 1,25-D would not be helping bone regeneration, either.

..Trevor..
 
 Re: Eye irritations
Author: Bridget Kinglock (---.delta.com)
Date:   01-28-03 15:14

I have sarcoidosis and it is effecting me the most around my eyes, they are always burning and I have nodules on the lids and the inside corners. They are affecting my appearance and I want to see a dermatologist to get a cream for the pain and the appearance. Do you have any suggestions.

Bridget
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-28-03 17:56

Hi Bridget,

Welcome to sarcinfo. Do you have a diagnosis of sarcoidosis? The nodules on your eyelids could be sarcoidosis. If so, it's likely your burning eyes are a symptom of hypervitaminosis-D.

Please take the time to read the tutorials and links on the first page of this site. It is also helpful to read the starred ** threads. It will take you awhile to digest all this information.

IMO, a dermatologist is unlikely to solve these problems unless he/she is willing to order the D-metabolite blood tests and then help you with the ARB and antibiotic treatment.

Meg
 
 Re: Joint Pain & Nodules
Author: Phil G (---.ivylnd01.pa.comcast.net)
Date:   01-30-03 05:54

Hello Caroline,

I'm glad to see that the antbiotic treatment is working for you. I started minocin last week, but I have a question to you regarding painful joints. I have a couple of arthritis type nodules on two of my middle finger joints and I am wondering if those went away for you or are you still dealing with that?

Cheers to you feeling better!!

Phil G
 
 Re: Joint Pain & Nodules
Author: Caroline (---.win.org)
Date:   01-30-03 21:18

Hi Phil,

The nodule I had was on my right index finger where it meets the hand. (I know I should use a reference for the correct word but I am being lazy). Since antibiotics it is about half the size. BUT it causes no pain now. My hip kept me awake and from getting comfortable--it is now pain free! I am amazed, I so feared the possibility of hip replacement, I put off telling my PCP of the pain.

Does your hand hurt or do the nodules restrict writing, typing ect.? Initially my hand hurt so bad it would wake me up. An x-ray was negative. I have not given up on the size reducing further.

Keep everyone posted on your experiences with the antibiotics, so we can all learn. Are you taking ARB's also?

Best of Luck as you progress toward wellness, Caroline
 
 Re: Joint Pain & Nodules
Author: Barbara Costa (---.proxy.aol.com)
Date:   02-02-03 13:54

I have been suffering for twelve years with joint pain and sarcoid nodules behind my knees at the cease of my thigs and buttocks and on the underside of both my arms. The ones on the arms are the worst . They are much larger than the others and very hard. They cause a numbing sensation at times and a great deal of pain around my elbow. It feels like a pinched nerve. I haven't recieved treatment for this in 5 years as whatever was tried shots plaquenil, were a failure . Is there hope? What alternatives are there ? My doctors tend to ignore my problems with sarcoid.
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   02-02-03 17:29

Hi Barbara,

Welcome to sarcinfon. There is a wealth of information here so I hope you are not too overwhelmed. The symptoms you describe can be helped by Trevor's protocol.

To learn all about it, first read the tutorials for patients at the top of this page. Then you can read any threads that interest you. The ones that are starred are especially important. You can also use the search feature at the top of the board; just click on search, type in a word or two and change the time limit to all days for the most extensive search of any topic you are interested in.

This is a very hopeful place. My joint pains have resolved considerably in just one month of antibiotic therapy and ARB therapy. Others report similar successes and you can read their stories on the success story thread. Read all you can and print out the information for doctors at the top right of this page to show your doctor. Hopefully, he/she will agree to help you get better.

Meg
 
 sarc biopsy tomorrow
Author: J Messina (---.client.insightBB.com)
Date:   05-11-03 22:13

From CT scan results and the constant pain I've been having in my body (palms of my hands, soles and heels of my feet, thighs and legs) for the past few months, my doctor thinks I may have sacroidosis, and I am going to have a pulmonary biopsy tomorrow. He decided that we should rule out cancer before beginning the prenosone therapy, since the corteosteroid treatment would only aggravate a cancerous growth if, in fact, the diagnosis of sarcoidosis proved inaccurate.

I'm terribly frightened. Don't really know what to expect. I'm afraid of the results; whether it's sarc or cancer. I've never had a lung biopsy, and I'm afraid of my lung collapsing or some other bad thing happening.

I've been dealing with the pain by taking Tylenol. And I went to Dr. Weil's Web site (www.drweil.com), where it said to cut down on dairy products, use only extra virgin olive oil, and make some other dietary changes. I've been following this and reading everything I can on sarc. I'm please to see this forum, and I'll read it regularly to see how everyone deals with this illness.

JMessina
 
 Re: Joint Pain & Nodules
Author: DJ (---.tnt4.billings.mt.da.uu.net)
Date:   05-12-03 06:18

Dear J,
I had a similar prediagnosis of cancer from CT and symptoms. Biopsy of the lymph nodes showed definite sarcoidosis. Sarc is not easy, but we were really glad it wasn't cancer. I recovered nicely from the operation, and was able to reduce my sarc pain greatly simply by staying out of the sun, protecting my eyes from light and avoiding foods with vitamin D.

I used the recovery time to read up on all the threads, articles and links provided on this forum. By the time I saw my doctor, I had enough information to convince him that the more effective, less damaging protocol of ARBs and antibiotics was the way to treat my sarcoidosis.

Learn everything you can. Most doctors are not too familiar with the current research relating to this disease - so you should be. Good luck on your biopsy and let us know how the diagnosis goes.

DJ
 
 Re: Joint Pain & Nodules
Author: Louise Brooks (---.wdghu.org)
Date:   05-13-03 09:33

Hi everyone,
I was diagnosed with Sarcoids 10 years ago at that time (age 32) I had the red bumps down the shins of my legs, very painful and they did an MRI and they were in my lungs....went to lung specialist just had to keep eye on me... they disappeared a couple of months later..no one told me that I would have Sarcoids 4-ever. A couple of months ago the bumps returned on one leg...on my knee and huge ones on my ankle of the same right leg. the knee one has gone but the ankle one is very painful and my foot is swollen red the root bump turns purple and if I have a hot bath the whole area turns dark red...chest xray shows nothing...however, I have these hot feelings in my cheek up to my head that comes and goes , like someone is pressing on a hot/cold nerve. What is interesting is the messages containing vitamin d and calcium levels that apparently effects sarcoids, this I find extremely interesting because I had developed an ulcer in stomach 2 months ago and found that drinking milk with all meals really helped, I probably have increased my calcium and vitamin D levels 10 fold...I am going to cut back and see what happens...I just found this so much of a coincidence that when I raised my calcium and vitamin d levels my bumps returned....any thoughts...
PS My ankle looks awful and feels like someone sticking needles in it and it does pain at night as well....is Advil any relief for inflamtion with Sarcoids...tnx

sore and swollen ankles with nodules that keep spreading...
lou b
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-13-03 12:03

Hi Lou,

Welcome to SarcInfo. Please take some time to read the patient tutorials so you will have a better understanding of what causes sarcoidosis and how to treat it.

It certainly sounds as though your increased milk/vitamin D intake may have exacerbated your sarcoidosis. You can learn more about other foods that contain Vitamin D by reading the thread 'Vitamin D levels in food. I'm curious as to whether your stomach ulcer was treated with antibiotics. Milk is an old-fashioned, ineffective treatment for ulcers because they are caused by a bacteria, H.Pylori.

Most importantly you should ask your doctor to check your levels of 25-D and 1,25-D. They are most likely elevated. When you get them closer to normal levels your symptoms will subside. The facial symptoms are particularly worrisome. There is the possibility of permanent facial nerve damage if you don't get those D-levels down.

Avoiding sunlight will also help you to reduce your level of Vitamin D and thus the sarcoidosis inflammation. It's not surprising that your symptoms were made worse by the heat of a hot bath. Heat often increases the inflammation. Advil may relieve some of your pain but the real 'cure' is Angiotensin Receptor Blockers and minocycline.

I hope you will print out the papers for physicians and ask your doctor to help you get better.

Good luck,

Meg
 
 Re: Joint Pain & Nodules
Author: mona (---.rasserver.net)
Date:   05-13-03 18:05

Ho Louise,
The red painful bumps that you are experiencing are called Erythema Nodosum. It is surprising that many doctors don't know what they are. I first got them many years ago afer abdominal surgery and the doctor thought they were an allergic reaction to the anesthesia, which they may well have been. Go to www.google.com and type in "erythema+nodosum"

You will find pictures there and many explanations. They can be due to the sarcoid, or from an allergic reaction. I used to get the painful tiny red bumps under my fingernails, and knuckles, and at first thought they were paper cuts. That's how much they hurt. For a quick fix of the bumps cortisone cream usually helps. For long term Trevor's protocol is most hopeful. Good luck, Mona
 
 Re: Joint Pain & Nodules
Author: Louise Brooks (---.wdghu.org)
Date:   05-14-03 07:56

hi Meg,
I was not treated with antibiotics as Dr. took blood test for that and said it was normal, just gave me Periat to control excess acid. I have appointment for tomorrow will ask about the 25 d & 1,25 tests although he will probably scoff at me, he is of the belief that anything wrong with a woman is usually in her head or hormones, that's why I am in process of looking for new doc. Am staying away from milk for the hell of it...anything to get rid of pain and pin sticking feeling. And Mona, checked out the website and found it very useful, could of used this info ten years ago, they just treated my sarcoids like it was nothing to be concerned about and that it would just go away. Thanks again Meg and Mona

sore and swollen ankles with nodules that keep spreading...
lou b
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-14-03 14:49

Hi Lou,

Could luck with your doctor visit tomorrow. You may want to make it clear to him that you will be looking for another doctor if he doesn't agree to the 25-D and 1,25-D tests. That might be the leverage you need.

I'm glad to hear that you will be avoiding milk as most of it is supplemented with Vitamin D. It sounds as though your stomach problem was gastritis because ulcers are caused by the H. Pylori bacteria. It was probably the Periat which reduced your stomach acid that alleviated your symptoms, not the milk.

Please be sure to let us know how the doctor visit went.

Meg
 
 Re: Joint Pain & Nodules
Author: Louise Brooks (---.wdghu.org)
Date:   05-16-03 06:29

Hi Meg,
The only answer I recieved from Dr. was that sarcoids is a strange disease, varies greatly, usually goes away, sometimes you can die from it and felt my bumps, thought that there was no reason to believe that the disease was "active" (huh?) disagreed about any blood testing , through a prescription at me for pain and inflamation and see ya later. Had a chest xray about a month ago and nothing showed, but my ankles are full of the nodules, have stopped all intake of vitamin d...doctor never heard of that as coinciding with sarcoids....he is not my original doc that I had 10 years ago when first diagnosed as I moved to another province, here in Ontario you can wait up to 2 years + for a family doctor and then if they interview and decide they would like you as a patient if not then you are SOL, so if you threaten to go someplace else its a joke because we are so short of doc's here.
That's where I am at for now...I have learned more from here than any doctor so far...am going to get an eye exam done as well to make sure eyes are ok, I'm not having anydifficulties but just want to make sure.

sore and swollen ankles with nodules that keep spreading...
lou b
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-16-03 06:38

Louise,
I would suggest you lodge a complaint with your local Public Health authorities

"sore and swollen ankles with nodules that keep spreading" is a condition which deserves attention. Your own doctor may not be interested in curing you, but you have a right to such care. When I was researching at Hospital for Sick Kids, Toronto, (admittedly a long time ago) this sort of attitude would not have been tolerated...

Or you could just write to him and ask for Minocycline and Avapro in return for staying out of his hair. Neither are expensive drugs

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Jan Lewis (---.lgeenergy.com)
Date:   05-16-03 08:46

Louise, I have a good friend in Canada who is taking the Minocin. He just asked his doc for a prescription and got it with multiple refills. I'm not sure which area he is from, but could ask for you.

Jan Lewis
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-16-03 19:59

Hi Louise,

It sounds like your doctor is practicing cutting edge medicine from the Eisenhower era. You are wise to look for another. I'm sorry that the Canadian medical system seems to complicate things for you. But you found us and I have a feeling that you will persist until you get the medical help you deserve.

Meg
 
 Re: Joint Pain & Nodules
Author: Christian (---.ipt.aol.com)
Date:   05-17-03 04:34

Louise,

I live in the Province of Quebec and things are pretty bad here, maybe worse than in Ontario; shortage of doctors (at least 2000), of nurses, never ending waiting lists for surgeries, crumbling buildings , overcrowded ERs (very often on the front page of newspapers, they give the number of people lying on stretchers in corridors, even telling people to stay home) out of date equipment, unending delays to see a specialist (3 months to a year is not unusual, my daughter needs to see a neurologist and in last february, the hospital booked the appointment for her and it will be in January 2004 ). I feel I live in a Third world country. Last year, the government had to send cancer patients to the States so they could get some chemo.

I have been looking now for a family doctor for almost 3 years, unsuccessfuly, but was able to get Diovan and Minocin through a friend's doctor. So what I'm saying is that even if things are bad, and you don't have the energy, you will have to move on to another doctor until you get what you want (I have seen at least 15 different doctors). Ask your friends, coworkers, maybe they have an understanding doc that could help you.

Do you have private health insurance? I was able to get D metabolites checked a few times, and twice I was able to convince doc by saying I would pay for it, and wouldn't be a burden on the public healthcare system.

Also you could print papers from "Papers for physicians" and bring them to doc. Since you have skin manifestations of the disease, maybe you could see a dermatologist and bring the paper by the french team saying that Minocycline cures skin lesions (you will have to dig for that one, it somewhere in the site, use the search engine ). Maybe a dermatologist will be more open-minded.

I wish you luck in your quest for a good doctor. I will send you positive vibes.

Christian
 
 Re: Joint Pain & Nodules
Author: JC Miller (---.nash01.tn.comcast.net)
Date:   05-17-03 10:08

Hello all,
I have noticed that I am getting a lot of knots I guess swollen nodules. I have one big one behind my knee that my Doctor told me was something he wanted to watch and I have found a few more in my neck and smaller ones on my finger joints. I first was wondering how serious this is and is there anything I need to be watching for. Another thing that has popped up is I have been having a lot of bladder spasms and it seems like the area there is swollen. I do have some pain with the swollen nodules. I know this is common but I am a worry wart.

Wishing all well,
JC
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-17-03 10:33

JC,
Those nodules sure sound like sarcoidois nodules. They match the rest of your symptoms.

You have been around SarcInfo a long time. You know the cure. But until you implement it your suffering will just become worse and worse. Does your doctor care? Based on what you said, it sure doesn't sound like it.

So these are the steps to getting better:
1. Measure your D-metabolites to give you some idea of what Herxheimer to expect, and to give you a reference disease severity
2. Apply angiotensin blockade, eg 40mg benicar every 8 hours
3. Slowly wean off prednisone
4. Start taking minocycline, as much as you can stand without the herx hurting too much, as per the instructions in the "dosing" paper at top right of this page.
5. Wait, and be amazed as the changes gradually return your body to some state near 'normality'

Talk to Doc about implementing this schedule. Or get a new one who will listen

Sorry to be so brusque, but I know of only one way out of the situation you are in...

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Louise Brooks (---.wdghu.org)
Date:   05-20-03 09:54

Christian, Meg, Jan & Trevor,
Thanks so much for the info and support, I am going to get a referral to the dermatologist and go that route to get the minocycline, wondering if I can ask Dermatologist about the D metabolites testing , if he can send me for that. My nodules have shrunk to hard nodules now that I have stopped consuming Vitamin D in anything that I know contains it , I keep reading everything...noticed a small flat red spot on other ankle that hurts but has not risen into a bump yet, so perhaps it wont. I just know that my nodules are now hard and the huge inflamation I had over the entire ankle area has gone, so I look like Ihave an ankle now. However, they are more painful to touch so hopefully soon it will go away when I can get a hold of some minocycline. Once again everyone thanks, by the way does goats milk contain vit D? I looked at a carton at the store, it doesn't say it is fortified with anything. Don't want to try unless I know for sure....it's amazing how many items have vitamin d added..it's like they just say ok its a good vitamin let's add it...

sore and swollen ankles with nodules that keep spreading...
lou b
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-20-03 18:02

Louise,

Certainly, any dermatologist can order the 25-D and 1,25-D tests. Good luck!

Meg
 
 Re: Joint Pain & Nodules
Author: Sue (---.xh1.lilly.com)
Date:   05-26-03 07:37

Hi - I have nodules on both thumbs at the middle joints. They look like warts, but nothing seems to help reduce them. I've been on Minocin since February of this year. Any suggestions - has Antibiotic cream helped anyone?
SUE
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   05-26-03 20:21

Hi Sue,

Antibiotic cream would not penetrate to deep within the tissues where the CWD bacteria are hiding. What dosage of Minocin are you taking and are you taking an ARB also? Are you avoiding Vitamin D? Did you have your D-metabolites tested or retested since February?

I know 4 months seems like a long time to be taking antibiotics but when it comes to sarcoidosis and a life-time of accumulating mycoplasma bacteria, antibiotic treatment may need to continue for some months or even years.

In one study, patients on antibiotic therapy for Rheumatoid Arthriitis took 100mg of minocycline every other day for 3-4 yrs before achieving complete remission. Now, we have another weapon with the ARBs and we're using a higher dose of minocycline so it may not take that long. But for some with extensive involvement or involvement in tissues that is not well perfused by blood it might.

So I think you need to look at the protocol to see if you are following it correctly and then just give it some more time. Have you had improvement in other symptoms? Hopefully those nodules will be the next to go.

Meg
 
 Re: Joint Pain & Nodules
Author: Sue (---.xh1.lilly.com)
Date:   05-27-03 10:32

Hi Meg,

I'm taking 100 mg Minocin e/o day and have since February. Yes, I've had d-metabolites/ACE tested before starting and once since. They have only come down a little, but I'm in this for the long period. I have only been on the ARB (diovan 80 mg BID) for a month. I tried it once before and it dropped my BP and raised my HR so stopped it for a while. Have now re-started and am trying to ride out the misery. I watch my Vitamin D and sun exposure.
What is the higher dose of Minocin that is now being used? I haven't had time to read sarcinfo lately, been too busy and too tired.

Sue
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   05-27-03 11:54

Sue,
The minocin dosage tutorial is at this link.

200mg of minocycline taken every 48 hours is roughly equivalent to the peak concentration that would be achieved if you were taking the FDA recommended 100mg bid.

Many of us are on 200mg qod, it seems to be a dose which brings on quite a lot of herxheimer. It is the maximum I suggest.

But your Doc might want you to take a higher dose - anyway, print out the tutorial and pass it along to him/her.

..Trevor..
ps: there is a huge difference between Diovan 80mg every 6 hours and 80mg every 12 hours. See the graphs in this paper to understand why.
 
 Re: Joint Pain & Nodules
Author: Sue (---.xh1.lilly.com)
Date:   06-01-03 04:39

Trevor:

I don't see anything in your 2nd link to the paper that refers to Diovan 80mg every 6 hours??? Am I missing it?
Sue
 
 Re: Joint Pain & Nodules
Author: nissa (---.tamqfl1.dsl-verizon.net)
Date:   06-06-03 17:04

i have an mri report of my back it says i have degeneration in my L4-L5 and L-5 -S1and have been on prednisone for 16 years
i also hurt my ankle, supposedly a sprain..i made them exray it 3 times because the panus horrible and still feels like its uneven..and swells ..its been 11 months..
i have many bad sytmptoms associated with using prednisone including mild scoliosis in my upper bank that looks like ill be hunch back on my older years. im 32 and weigh 300 lbs and cant exercise due to the pain and and severe asthma diagnosed as sumpters syndrome..
i also have some sort of autom imunee disease that my doctor said was disgnosed 4 years ago. i was in another town and switched doctors and the info was never provided until i recently began seeeing this dr again. im wondering if any of this is related to this disease possibly..
the test he is having done again to verify i have it fort treatment through my hmo is IgG + subclases 1-4
basicaly i have no immunde system left so im looking for answers and to read up on whats wrong with me..any advice appreciated, thanks
 
 Re: Joint Pain & Nodules
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-06-03 20:46

Hi Nissa,

Welcome to SarcInfo. Your medical situation sounds pretty complicated. Do you know why you were put on Prednisone 16 years ago? How much do you take?

What has your doctor told you about the immune disease he diagnosed 4 yrs ago? You have a right to more information about your medical condition and it should be explained to you in terms that you can understand.

You are right to be concerned about the long-term use of Prednisone and it sounds like you may be experiencing some of its consequences along with some serious side effects.

It's always a good idea to have the doctor check your levels of 25-D, 1,25-D and serum ACE. Ask him to do that now and then get back to us with the results. Trevor will interpret them for you and tell you what to ask your doctor for in order to help you get better.

Good luck to you,

Meg
 
 Re: Joint Pain & Nodules
Author: KELLY (---.isp.comcastbusiness.net)
Date:   07-01-03 16:55

Trevor-

Don't know what to think any more about my medical situation. Please tell me what you think. I plan on reading your links and info. Fifteen months ago I began acheing all over and became very stiff when waking, joints began making popping, cracking sounds. Family Doc did blood work. Rheumatoid level came back slightly elevated- I believe it was 32, she told me this was typically not high enough to be RA, but due to the fact that my mother has RA she sent me to see a rheumatologist. He did an exam, and ordered a bunch of blood tests. At the time had general achey feeling, lots of fatigue, and sweats. After the blood work came back I was told that I needed to go see a hematologist immediately because my white blood cell count was very low. Went to hematologist who diagnosed a lymphoadenopathy and was concerned I may have lymphoma or leukemia. Did a bone marrow biopsey which when read by a computer showed a 7% abnormal cells. Was told by hematologist that I probaly did have one of the two but it was inconclusive so she was sending the marrow to another lab to have a patholgy dr. look at it. Spent two weeks waiting and worrying. Hematologist called me back and said that there was an inflammatory process in the blood, not a cancerous process. Around the same time had one of the lymphnodes in my neck that was about the size of a quarter biopisied surgically. This came back as atypical lymphnode. Even explained to surgeon that we needed to rule out sarcoidosis as this was one possibility the rheumatologist had suggested. White count eventually returned to normal. No one can explain why it dropped. Hematologist and Rheumatologist suggested I see a specialist at Hopkins. Saw a hematologist and another rheumatologist from Hopkins. More blood work done to rule out things like TB and other viruses and lyme disease. All came back negative. ACE levels tested then and since have been high- don't know what the specific level is will ask next time I see Dr. When I left Hopkins- was told my fatigue and achiness may be fibromyalgia, and was left feeling like a hyperchondriac... they made a few reccomendations.. one was to get a sleep study done and see a pulmonologist. The sleep study did come back positive for sleep apnea... and I now use a c-pap machine which seemed to help for a while. I had gotten to the point that I couldn't get out of bed in the morning to take care of my kids. I have been able to get up in the morning but still most days seem to need a nap. I frequently get sweats at night and with any kind of even mild exertion during the day.
I have had pulmonary funcition tests done- which show nothing except for my asthma which was diagnosed when I was twenty-two. I also have had a chest x-ray which is normal according to pulmonologist. My ACE level has remained high- which the pulmonologist can not seem to figure out- I think he thougt it would come down when the sleep apnea was treated- I have read that high ACE levels can sometimes be caused by hypoxia. I have a history of Hyperthyroidism-treated with a thyroid blocker for two years and then it just went back to normal and hasn't required any medicine since. I also have a hisotry of insulin resistance- thought to be related to polycystic ovarian syndrome. I have a history of asthma- get frequent sinus infections, and take antibiotics and predisone quite frequently even though I currently take inhaled steirods and singulair. I also have a history of blood clots in my saggital sinus vein and transverse sinus vein in my brain. This occured six months after I gave birth to my twin girls. Again no one sure of the cause a clotting disorder was ruled out. I have a fibroma- in my left brest and multiple lumps in the subcutaneous tissues of my arms, chest, hips, thighs, etc. Had two of the larger ones surgically removed and was told they were lipomas. In the last year the pain in my hands got so bad I couldn't sleep, had a nerve conduction test done and was told I had one of the most severe cases of carpal tunnel syndrome that my neurologist had ever seen. I see him for migranes that started shortly after the blood clots. Have pretty good control with them thanks to neurontin and maxalt. Had surgury for bilateral carpal tunnel release which has resolved most of the pain in my hands. In april was playing with my son in the yard and developed a sharp pain in my right knee that felt like a lighting bolt. Went to orhto after pain recurred and brought me to tears, and couldn't go up or down steps without severe pain and a feeling of instability in my knee. Had arthroscopic surgury in May for suspected miniscus tear. Surgeon came out and told my husband and me that there was a non-typical, or non-specific type of inflammation that was all over my knee joint. He told my husband he didn't know what it was and hadn't seen anything like it. When I went back for a follow up appointment he said that he thought it was something called pigmented villonodular synovitis. However- the inflammation in this process was usually a rust-orange color and mine did not have that coloration, it was more white/yellowish lookinh. He did not biopsey this as he did not have permission to do anything other than fix the minisucus- he did find a small tear and had to scrape it due to the location. Three weeks after the follow up visit I began having swelling in the knee and increased pain. Was also getting fluid down in the ankle. Went back to the orhto and he tried to drain fluid but could only get a small amount before needle clogged. He agreed at my insistance to inject Kertaid into the joint. This has helped a great deal but am still having some pain, and can't stand to be on leg very long without discomfort starting. Ortho says the best treatment for this is a synovectomy- but right now I don't have the sick time at work to do this as my family needs the pay-check that I provide. I went back to the rhematologist that I saw when all this began as I wasn't confident that the orhtopedic was right or that he was familiar enough with this pvns if he was. The rheumotologist still thinks that this is sarcodosis. He want to x-ray my hands and wrists-when I return at the end of this month. The most frustrating thing about all this is I am only 35 years old. I seem to have these small purple dots just under my skin on my legs. These do not hurt like the larger lumps do. Could the results that I've gotten on the lymphnode and the lipomas-be mistaken. I am still seeing the pulmonologist. All he seems to want to do is a pulmonary function test every six months. I am getting very fustrated with the practice of medicine and know that I am not nuts.
 
 Re: Joint Pain & Nodules
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-01-03 17:11

Kelly,
You really have had a terrible time.

I cannot pretend to be able to put it all together, but I suggest that you ask Doc to try a "Therapeutic Probe" of low-dose minocycline for a couple of weeks to see if you get a herxheimer reaction. If you do get herx then you have
1. Identified that bacteria are to blame
2. Identified that the bacteria are susceptible to minocycline.

Minocycline is now indicated for the treatment of RA, so Doc should be receptive to that concept. I would suggest starting at 50mg qod and work up slowly to 200mg qod over a 2 week period. Stop when you get identifiable Herx, to make sure that the herx goes away.

This will (temporarily) exacerbate any Sarcoid inflammation which is present, and probably also target your kees. There are many species of CWD bacteria (52 at last count), and it would seem to me that you have an unusual mix of them. Simplest way to find out is the good ol' "Therapeutic Probe", IMO...

..Trevor..
 
 Re: Joint Pain & Nodules
Author: Sue Sullivan (---.dsl.stlsmo.swbell.net)
Date:   07-08-03 18:53

I was diagnoses with CNS sarc in 1995. Massive doses of Prednisone supposedly put it into remission (per MRIs and Neurologist). I am still on 10-mg once a day of Pred.

Over the last 5 or so yrs. I have developed "degrenerative arthritis" according to the rheumatologist. I take glucos/condr and have tried all the new arthr. drugs. Currently on Bextra. None have worked. Within the last year, I have developed sore hip and shoulder joints and on my left foot the joints where the toes meet the foot are very sore. Any pressure from shoes is very painful. I'm to the point of wearing either sandals or tennis shoes.

I've been told by my docs that arthritis often accompanies sarc. I've learned from this site that the bacteria are most likely in my joints and causing the symptoms. I am ready to start Trevor's suggested treatment protocol. Will keep updating on this site as I progress.

Sue in St. Louis

Sue in St. Louis