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 The material here provides useful background, but much of it is now out-of-date.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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 Why do doctors insist on prednisone therapy?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-10-02 14:17

>>>Notice from Admin - New data on steroids causing hip and joint failure are in a seperate thread, and may be read by clicking this link<<<


Thanks for the new forum for sarcoidosis. Here is my story.

I was sick for a few years before I was diagnosed with sarcoidosis. I had adjusted my lifestyle and learned to live with much of the pain. After a bronchoscopy and biopsy, the pulmonologist I saw wanted me to take prednisone. Since there had been plenty of time for me to research sarcoidosis and prednisone therapy, the "gold standard" of treatment, I simply declined. I told the doctor I saw no reason to rush to treat something I had lived with for a long time, and which had already damaged my lungs (who knows when?) - by using a drug with tremendous known side effects.

This specialist was shocked and angered by my position. I told him I had seen no report that prednisone therapy stops progression of the disease. I asked him why should I add the known side effects of prednisone to the pain and symptoms I already had from sarcoidosis. After I underwent further tests looking for damage to other organs, and those were okay, the doctor agreed it was my choice to take prednisone - or not. He told me he had researched it - just to prove to me the evidence was there- and admitted he couldn't find proof prednisone would make me better. I made it clear I was not willing to risk the side effects of prednisone, which are well-documented and certain (based upon doseage and term of use), when prednisone is not a cure, doesn't stop disease progression - and sarcoidosis has a high percentage of spontaneous recovery anyway.

After another lung CT scan three months later, he surprised me by telling me I was being irrationally fearful of prednisone. He attacked my confidence that I could manage without steroids. I told him my symptoms were 75% better and I had more energy. I felt like my life was returning only three months after my diagnosis. He told me I was fooling myself, that I was not better- that my lung scans were worse! He said he was concerned I was in danger of losing function of my middle lobe. He said if I waited too long to take prednisone, it might be too late to help me! Under his intimidation and pressure, I agreed to accept his prescriptions for prednisone and stomach meds he insisted I would need.

I left his office scared and bewildered, but my instinct was to NOT take prednisone. I couldn't understand how my lung scans could be worse when I felt so much better! The doctor had NOT shown me a copy of the written radiology report, something he had done with my earlier scan. I decided to wait until I saw the radiologist's report comparing the scans with those from three months before. When I received the report, the radiologist said in writing there was NO CHANGE in my lungs! Needless to say, I never had the prednisone prescription filled. I also never went back to that pulmonologist.

It took me a few months to get over the emotional trauma of that experience, but I am doing well almost one year since my diagnosis. Contrary to the dire warnings of that doctor, I haven't been to the emergency room and my lungs haven't collapsed.

Reading the experiences of sarc patients who have taken prednisone, their cry seems to be that prednisone, with its side effects and withdrawal, is WORSE than sarcoidosis itself. WHY, WHY, WHY DO MEDICAL DOCTORS PUT SO MUCH FAITH IN PREDNISONE THERAPY? Please don' t tell me it is because there is no other drug for sarcoidosis. That alone doesn't explain the irrationality I have seen. To wait and do nothing would be better! What's the rush? What is the motivation? I point out that the doctor must have agreed that prednisone's side effects are certain - he issued a prescription for 40 mg of Pepcid along with the 40 mg of prednisone.

Belinda
 
 Re: Why do doctors insist on prednisone therapy?
Author: Lynn (---.elnk.dsl.gtei.net)
Date:   03-10-02 19:35

I had this same thing happen....pulmonologist insisted I get prednisone right away. I just couldn't. Being overweight already and having diabetes/hypertension in the family already---I am very reluncted to try it.

From what I have seen, many people who get on pred, never get back off.

If you have symptoms that are liveable then you have the right to decide what you will put into your body. My pulmonologist was angry that I was against it. I had seen Dr. Sharma (leading sarcoidosis specialist in Los Angeles) and he agreed NO PREDNISONE and that with my family history---he would only use Plaquinel if the time came that I needed meds.

Be true to yourself......remember that doctors are in the business of making you better. The only way they know how is with surgery or meds. It frustrates them when they can't fix us.

Lynn
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.gtecablemodem.com)
Date:   03-10-02 19:56

Lynn,
You mentioned a topic dear to my heart, Diabetes (I did my PhD thesis on modelling of the insulin-glucose homeostasis in diabetics and healthy individuals).

When a patient presents with Diabetes the first thing a doctor should try to do is to advise a lifestyle modification. Cut down on candy, etc. You know the drill. Then , if that doesn't work, there are a number of innocuous drugs that help the body control its own blood-sugar levels. Insulin is a last resort, because we have known for decades that insulin slowly degrades the body, bit by bit. It sustains life, but generally at a very high cost to the patient (in lifestyle and lifespan terms).

We already know that people inherit a tendency towards sarcoid in their genes (alright - there are some doctors who still disagree with this - I will ignore them). Something like a tendency to Diabetes, right? Yet, when the scar tissue is seen on a chest X-Ray, often months after the immune challenge that caused the damage, their first instinct is to prescribe prednisone. Not to advise the patient to make sure that their lifestyle has been changed in such a way as to preclude further immune challenge, but to give a drug which has never been shown to 'cure' sarcoid, and has been definitively shown to degrade the body, bit by bit, in much the same way as insulin. Isn't it strange...

Here are a few research papers that you can print out and discuss with your Doctor(s). There are links to them at the bottom of every page of this Phorum.

1: 2001 Recommendations for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis

2: Steroid withdrawal: the ultimate hormone hangover

3: The John's Hopkins Vasculitis Center: prednisone side-effects (incl. photos)

4: Steroid-Induced Mental Disturbances

5: Prednisone Improves Symptoms but not Lung Function in Sarcoidosis

6: Corticosteroids contribute to the prolongation of the disease by delaying resolution

7: There is no conclusive evidence that corticosteroids affect the development of irreversible pulmonary damage

8: No data to suggest that corticosteroid therapy alters long-term disease progression

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Ken (---.proxy.aol.com)
Date:   03-10-02 20:52

After about one year of 40-60 mg@ of pred without PFT improvement and minimul ACE improvement, we began a coordinated change to lower pred and increase Methotrexate. Once off pred and on meth for two years my Liver started to fail. Off both for two months. We then went to Imuran. First at 50 then 100 mg@. Now after 2 months my ACE is at 26 the lowest ever since diagnosis. Combined with Vioxx arthritic pains less severe. Now monitoring WBC. Better than pred and/or meth. Take a look at Imuran.
 
 Re: Why do doctors insist on prednisone therapy?
Author: elaine emmi (---.client.attbi.com)
Date:   03-10-02 21:35

Hello,

I was diagnosed in 1976, tho I had been experiencing symptoms for years before. Luckily I had a doctor who was in agreement with me - no prednisone! He monitored, xrayed, blood tested, etc. instead. I have never regretted this decision, especially when I read the horror stories of those who have been subjected to prednisone. If a doctor insists on prednisone I think it is time to consider another opinion before taking that path.

By the way, the first doc I went to for sarc symptoms said there was nothing wrong with me and suggested I see a good psychiatrist! Needless to say I never went back to him. But I did seek another doc!

Thanks Trevor for this format!
Elaine
 
 Re: Why do doctors insist on prednisone therapy?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   03-11-02 07:31

Trevor,

In one of my discussions of treatment options with the pulmonologist, I told him that while I was declining to take prednisone therapy, I would gladly incorporate any lifestyle changes he could suggest which would make sarcoidosis more manageable. I told him I had already been consulting a nutritionist and was using nutritional supplements to help reduce inflammation. I told him I had not been working for more than a year because of fatigue and memory problems. I thought that was a major change, but I was open to suggestions about weight, diet, exercise, and any other life habits. He had no suggestions in that area which he thought would help.

What I tried to get him to understand was that I had survived up to that point without prednisone, and I didn't see how, at that point, prednisone would IMPROVE my life.

Oh yes - my ACE levels have always tested NORMAL and I am not hypercalcemic. The only thing to treat in my case would have been the cough, shortness of breath, fatigue, and mental/memory problems. I think his goal was to reduce inflammation and "melt" the granulomas. I'm still not sure prednisone has a great track record for doing that.

Belinda
 
 Re: Why do doctors insist on prednisone therapy?
Author: Glenn C. Reed Sr (---.ath.bellsouth.net)
Date:   03-11-02 10:31

I have had sarcoid for several years and when first diagnosed the Dr. put me on 60 mg. of prednisone. I was on this for over a year and after getting off it I weighed well over 300 lbs and also was a Diabetic,now I have kidney failure. Sure wish I had known about the prednisone before I started taking it. Maybe some new paitents will become educated about prednisone before they start taking it.

Thanks to all who' voiced their concerns

Glenn
 
 Re: Why do doctors insist on prednisone therapy?
Author: Eugene (210.187.2.---)
Date:   03-12-02 07:36

I was diagnosed with sarcoidosis in November last year, and was put on 30mg prednisolone / day. This was to reduce swelling of the lymph nodes on my arm & neck. I would have to say that it did work for me. Within two months, the swelling had reduced to almost nothing. I've now been told to taper down the dosage till my next checkup. My doctor gave me the impression that he would rather not have me on prednisolone, unless the symptoms get more serious.

Prednisolone is quite nasty with all its side effects, but it did work for me. Having said that, I would still rather not take it if I didn't have to.
 
 Re: Why do doctors insist on prednisone therapy?
Author: mbs (---.seasystems.com)
Date:   04-14-02 22:00

I'm on prednisone now because I couldn't breathe. The sarcoid is in my chest cavity lymph nodes and the swelling of the lympatic tissue was squeezing my bronchial system so I couldn't breathe and was experiencing tightness in my chest. since the prednisone, I can breathe and the tightness is in my chest occurs only when I exert myself - but this is getting better. Otherwise, my doctor would not have put me on prednisone. In fact, he said as soon as the swelling is gone, he'll take me off of it - he doesn't seem to treat the prescription of prednisone lightly. I hope other doctors are as considerate.
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (207.175.253.---)
Date:   04-15-02 04:19

mbs,
The "tightness in the chest" and difficulty in breathing that you are describing is called "dyspnea".

Prednisone is very effective in treating dyspnea. For many years it was thought that its ability to help the patients breathe more easily was associated with an ability to treat the underlying lung disease. A system of "scoring" was devised to show prednisone's effectiveness, and study after study reported that sarc patients felt better, and had less dyspnea, when they were treated with prednisone.

However, there is very little evidence that prednisone does actually improve the lung status, as measured by the pulmonary function tests (PFTs). These PFTs measure how the lungs exchange oxygen and carbon monoxide/dioxide between the bloodstream and the environment. "Prednisone Improves Symptoms but not Lung Function in Sarcoidosis" is one of the newer studies that have looked into this dichotomy.

Unfortunately prednisone brings with it the risk of a host of side effects that frequently degrade a patients overall systemic health. Some, like diabetes and osteoporosis, can be life-threatening.

Prednisone treatment of dyspnea works very well as long as the the "swelling goes away", and the disease remits. Unfortunately, this does not happen as often the literature would have us believe, and many patients stay on prednisone way beyond the recommended period of a few months.

Unfortunately there are very few drugs that treat dyspnea as effectively as prednisone. If their dyspnea is life threatening, some patients use inhaled corticosteroids, which are generally believed to carry fewer systemic complications. Other patients learn to live with the pain and discomfort.

The key thing is patient education, IMO. A balance has to be drawn between the patient's lifestyle now and their lifestyle in a year or two. When faced with drawing a balance between a patient that is presenting with immediate distress and the need to educate that patient on all of the difficult risks and tradeoffs, too many doctors seem to omit the education task, prescribing prednisone without exploring any of the (admittedly less effective) alternatives.

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: marianna (---.sympatico.ca)
Date:   04-29-02 14:04

I was diagnosed with sarcoid some twenty years ago and right away put on prednisone. My lung function was not so good the specialist put the fear into me and said that if I do not take it I will get into the next stage where not much help is available. I investigated first what prednisone is all about as well as what prednisone has for reaction when I start taking it. There was no other medication for this situation and after a month I started taking it. The Dr. wanted me to be on it as long as possible. After 3 month I started with many side affects, bloating, depression, pain in joints, jaw pain, hair thinning, teeth problems [ root canals etc.]. Anyways the list is too long. I changed Doctors after one year of suffering and he helped me getting off the prednisone. I went into remission for about 7 years until a reoccurence appeared. In short I was put several times on prednisone for short periods 3-4 month at the time for my lungs and kidneys. My calcium count is often to high and therefore I developed many a time kidney stones.
Yes Prednisone has helped me but also has damaged my system. I have now Osteoporosis, osteoarthritus, lost teeth [major dental work] Bone parts in my nose dissapeered and I have the middlepart gone. I went for alternative methods like homeopatics, radionics, acupuncture, network chiropractice, and many others, which have helped me to a certain degree.
I told my doctors that prednisone is no more a option for me no matter how sick I get. The cure is worse than the dis-ease.
 
 Re: Why do doctors insist on prednisone therapy?
Author: Barbara (198.92.216.---)
Date:   05-02-02 14:00

WOW...Do I know the ol' it's all in your head'' story.,...When I tried to tell my dr. that the Sarc had returned he told me that was impossible because you get it for about 2 yrs and then it goes away and I was suffering from a '''Lingering Fear syndrome''' and it was common for someone to hang on to an illness mentally long after the actual physical problem was over...and I needed to go through phyiatric therapy.... Needless to say that Dr was WRONG....But I have to admit it took me a while to finally admit to my self that I really did have the Sarc again and I was not as crazy as they were making me out to be......Strange world ....
Barbara
 
 Re: Why do doctors insist on prednisone therapy?
Author: Debbie (---.dialip.mich.net)
Date:   05-02-02 14:19

Barbara,
Doctors like that don't have any business practicing!
 
 Re: Why do doctors insist on prednisone therapy?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   05-02-02 22:05

Debbie and Barbara,

Probably every one who has been diagnosed with sarcoidosis has experienced the doctor who thought the problem was "in their head" or that what they were describing couldn't be a medical problem. We do have to fire doctors sometimes. If they don't know enough about sarcoidosis to help us, then we need someone else.

We have been given a diagnosis of a disease that is not well understood. The symptoms are confusing. Unfortunately, we have to work harder than the average person:
- to find the right doctor.
- to carefully plan our doctor visits so we tell the doctor what we need him or her to understand. The doctor will only give you a brief amount of time, so be sure you say exactly what you need to say - up front.
- to be detailed in observing and recording our own specific symptoms.
This may involve keeping a journal or marking on a calendar. It may help to take notes with you so you can discuss how long you have been having each symptom or how you have improved.
- to be disciplined in our lifestyle and self care.
- to learn about sarcoidosis and carefully consider treatment options.
- to share copies of new information with our healthcare providers, as necessary.

Sometimes we have to be blunt. I told my primary care provider from the beginning, "Look, you need to understand that I have a very full life. I have many things I need - and want - to do. I do not need or want to be sick, but I am. I am looking for help to get well. Once I am better, I won't be troubling you." It worked.

Stay well,

Belinda
 
 Re: Why do doctors insist on prednisone therapy?
Author: Dorothy (---.proxy.aol.com)
Date:   05-20-02 11:58

I am so pleased to see how many people have refused Prednisone as I have. Two pulmonary specialists recommended that I take it and as many of you have learned, the side-effects are tremendous. Yes, it does help alleviate some of the symptoms, but at what a cost!!!!!They have both agreed with me, that it does not "cure" the sarcoid, but just makes you feel better while you are on it. Not worth it to me. I am doing fine without it and would only agree to take it if I was a whole lot worse. I made a list of pros and cons and the pros list was very short. The cons list was incredibly long. Thanks for listening.

Dorothy
 
 Re: Why do doctors insist on prednisone therapy?
Author: dee L. (---.dialup.chcgil.ameritech.net)
Date:   05-23-02 21:33

I'm another who refused Prednisone therapy...

I had several golf ball size lesions compressing my superior vena cava (large blood vessel returning blood to the right side of the heart) and jugular veins and one that was compressing my trachea. My PFT was in the 70th percentile, as was my PO2 saturation levels. I was becoming cyanotic whenever I dozed off or fell asleep. I was told it might kill me but I felt I'd rather not have to live the rest of my life with the drug induced illnesses caused by long-term prednisone therapy.

I had done some research on the net and found some studies that were trying non-steroidal anti-inflammatories such as Motrin, Naprosyn, and some of the prescription anti-arthritics. I printed out information on these studies and discussed them with my MD. I opted for Motrin because it least upsets my stomach and has the least damaging effect on the liver and kidneys in the long term. I have been on 800mg-1200/day since last May. A 'significant' reduction was noted on a CT by late July of 2001, 2 months after starting the Motrin. My last CT and ACE was in December. The 2 largest lesions at that time were down to about 1/2 inch in diameter and my ACE was in LOW normal range. I'm due for a f/u CT in June. Other than some residual problems with the tearducts of my eyes which were also affected by the sarc, I'm doing OK... and still taking the Motrin.

I do NOT suggest that anyone do as I did. However, it is an option worth exploring with your physician.

Dee L.
 
 Re: Why do doctors insist on prednisone therapy?
Author: Cher (144.138.225.---)
Date:   05-24-02 11:00

Hi everyone,
I'm sure I have told you all before in previous postings but for those that haven't read them I thought I'd repeat my story a little to let you know my Dr's theory. Because he knows of the damage from Steroids & that I refuse to take them. I have several leisons/granulomas/swollen lymph nodes or whatever u choose to call them throughout my chest cavity, on my lungs, in my groin, in my neck, on my brain, under my arms etc etc etc.
After suffering from pain & breathlessness continuously I was put onto MS Conten which is Morphine in slow release tablet form. Yes it is an Opiate but I am only on a dose of 30mg at 12 hour intervals. I have now been on it ocntinuously for 3 years with no ill effects. It helps me to keep breathing by relaxing the muscles, the airways & limiting the pain. I have proved it is not Psychosamatic by forgetting it a few times & suffering all the symptoms in the extreme.
I don't know how it would work in Countries other that Australia but here I have to be a registered user. My Dr has to get permission for every prescription & then the pharmacist also has to get permission to dispense it to me. So if you are having trouble with the treatment your are recieving maybe this could help you too. Unless I forget to take a dose I have not had to have oxygen treatment since being on it. Prior to being prescribed & on occassions that I have forgotten a dose I have been on oxygen for hours/days at a time.
Cheers everyone, thanks for listening & stay positive
Cher
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-24-02 11:18

Cher, there is a thread about opioids on this message board (click here) which explains that several doctors' groups in the USA are now recommending opioids for refractory pain. So doctors can more comfortably prescribe them. There is always the possibility of abuse, and not all doctors will follow the groups' recommendations on this. The most common prescribed opioid in the USA is Vicodin. It is not as strong as what you are using, but is pretty readily available.

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Cher (144.138.225.---)
Date:   05-24-02 13:47

Thanks Trevor,
I did see it but I just put my story in again incase some of the new people to the forum haven't read that far back & also because i thought it was a good example of an alternative to prednisone. I hope I'm not too annoying repeating myself in different threads & for putting in so many replies. The site is just so wonderful & gives me so much inspiration.
Thanks again, I hope you know how much I & everyone else appreciates your input, your knowledge & your time taken to keep this site going. I for one check in 3 or 4 times a day.
Cheers & stay positive
Cher
 
 Re: Why do doctors insist on prednisone therapy?
Author: Donna (---.proxy.aol.com)
Date:   05-25-02 19:33

Hi Cher, Dee and the others:
Just a quick note about steroids. I was diagnosed in April, 2001 with mainly a mild form of pulmonary Sarcoidosis. I was put on an initial dose of 50 mg. of Prednisone and started reducing the dosage immediately. I ballooned up to 180 lbs. in no time. Felt miserable, looked disfigured, was hard to write because of the nervousness and could not control my craving for king-sized candy bars. My husband tells me I was moody - I WAS! I warned my 10-year old son that if I started getting cranky with him, that it was the drugs. Sure enough, a self fulfilling prophecy! My pulmonologist started me on 100 mg. daily of IMURAN. I'm nervous about taking it because it MAY increase my chances of developing lymphoma! Am having monthly blood tests to monitor that. I had an appt. this month with the top Sarc dr. in this area at the Univ. of Michigan but he decided to stop taking new patients and notified me two days before my appt. Am at my wits end. Have a lot of questions and not many answers. Thanks for this forum. Anyway, my Prednisone withdrawal horror story is this: I was on my last two doses of Prednisone at end of November when I developed a horrendous cough. Regular medicines were not helping - it felt like I was ripping my chest muscles - some coughs felt like I had thousands of minute shards of glass in my lungs...my pulmonologist did not take it seriously enough for me...I finally went to the walk - in clinic and made the doctor there LISTEN to me tell all my symptoms for the last 6 weeks...he gave me a shot of some type of steroid (not Prednisone) and it did the trick. Have felt much better since January. Have lost 32 lbs. since December. Do not plan to go back on steroids unless my life depends on it! Thanks for your concern. I'll keep all of you in my prayers,
Donna
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   05-25-02 19:53

Donna,
Imuran is a powerful drug, as you seem to understand. Surely your pulmonologist explained to you why he has decided to treat your sarcoidosis with it?

As a scientist, I believe that it makes no sense to administer drugs unless you know exactly what you are trying to achieve, and exactly how that drug will help you achieve it.

It takes a lot of work to develop a doctor-patient relationship which is satisfactory to both parties, and it takes work to keep the relationship on track. But, in my opinion, it is the single most important thing that every sarc patient needs to do.

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: joye burford (---.direcpc.com)
Date:   06-03-02 08:00

Hello, I just discovered this site, and I am delighted to find more answers than I have had from professionals since my diagnosis 5+ years ago. I must tell you, my experience with prednisone. I am akin to a drug addict, in that so much relief and general well-being are experienced with this little white pill. I DO detest the side effect of moon-face, weight gain, but to be able to get up and have a normal day is priceless. I only take a 7 day therapy routine as needed, and when I totally run down, knowing there is help, gives me hope. I am sorry you have not had a good experience, but I find it a miracle. I was sure I would be without symptoms in 3-5 years, as my diligent Dr. encouraged, but unfortunately that is not the case. Thanks, and good health
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-03-02 13:03

Joye,
I think the point of what people are saying about prednisone is not related to its short term effectiveness - with few exceptions, most people report it makes them feel better - it is a question of whether it is worth paying the price to feel better now. That price comes later in life. When you might suffer from Asthma, Osteoporosis and Diabetes (to name a subset of the problems). I guess unwelcome advice gets given to 'addicts' of any type And I guess it gets the same amount of attention shown to it

Prednisone is generally well tolerated for a month or two. Side effects generally start showing up about 6+ months into treatment. Get the doc to keep an eye on your bone density.

Anyway, I am glad that oral prednisone works so well for you. And I hope that the ideas on this board may help you to become less reliant upon it, as time goes by.

..Trevor..

ps: Today I had to add another side effect to the long list attributed to long-term prednisone use - The spontaneous rupture of both Achilles Tendons. They say it is pretty common. I guess it just gets blamed "on the sarcoidosis"
 
 Re: Why do doctors insist on prednisone therapy?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   06-03-02 21:50

Trevor and Joye,

Oh yes, someone I knew, who had dealt with sarc for 17 years, was having surgery for this type of injury (tendon damage) about the time I was being tested for sarcoidosis. He had been on long-term prednisone therapy. Knowing this weighed in on my consideration of prednisone treatment.

There are some fairly immediate side effects of prednisone but others don't become evident for a while. The long-term side effects are more damaging than weight gain and moon face. Those may go away.

Prednisone is the only drug I have ever been offered and told that I could NOT STOP TAKING it on my own, because stopping the therapy could be hazardous to my health - perhaps even life-threatening. This risk is not due to sarcoidosis, but due to the profound effects of the drug on the body.

When I sign informed consent papers before any other medical procedure requiring as much confidence in my doctors (such as surgery), I am expected to understand the risks. In surgery, I know that my well-being lies in the hands of the surgeon and medical team for the duration of the surgery. If all goes well, my life should be back in my control as soon as I recover. On the other hand, if I agree to take steroids.. as usually administered in sarcoidosis cases.. I am agreeing to an open-ended contract. I don't know how long I will be under the influence of the drugs - or even whether I will be able to wean off of them. Those decisions will not be in my control.. once I proceed with the therapy.

The bad side effects from this drug therapy may not come until months or years after taking the drugs. Side effects are directly related to how long and at what strength I have have taken the drugs. If I make a decision based on my circumstances NOW, I have to consider that the full effects of that decision may not hit me until much later. I don't know what my circumstances will be then. It's sort of like deciding whether to smoke cigarettes. Here is an article covering a more unusual case of the side effect necrosis (bone death) in multiple joints, not just the usual hip joint. The article notes that steroid-induced osteonecrosis is not uncommon.

That's why I had to think before I took the drugs. The risks, as well as the decision whether to take corticosteroid therapy, are the patient's. I decided not to do it. It was a difficult decision for me, because the doctor was pushing me to take the drugs and minimizing the facts I presented to him. I haven't regretted my decision to say no to prednisone.

Take good care of yourself,
Belinda

P.S. When steroids were first used, the results seemed miraclulous, until it was discovered that useage over a long time turned steroids into "scare-oids."http://arthritis.about.com/library/weekly/aa051398.htm?once=true&

 
 Re: Why do doctors insist on prednisone therapy?
Author: B. LaMotte (---.dsl.sndg02.pacbell.net)
Date:   06-04-02 21:13

I am a prednisone user for the past twelve years, I was diagnosed with Sarc May, 1988. during this time I have seen three pulmonologist, with the exception of the first one, my doctors have been great with their time and efforts to get my Sarc under control. I saw my doctor on June 3, at this time I had my PFT. which does not change from time to time, I see my doctor and have my test every six months. my doctor usually goes back and check my test results as far as a year ago and then discuss the changes with me, which is very minor. I started taking pred. at 40mg daily and like most people my weight went up,I had the moon face and every nasty side effect that goes along with this TERRIBLE drug, I am down to 5mg daily which is working for me, my breathing is a normal as to be expected, my weight is under control by change my eating habits, I have develop diabeties which I am controling with diet and excersise, on my last appoint my doctor told me about Pulmicort Turbuhaler (a costeroid which goes straight to the lungs with less side effects. i am to ty this for 4 mths while weaning myself off of pred, at this time i will take another PFT and also check my liver to see how this new medicine will work for me. Will keep you informed. i hope that this new inhaler would work and i will be able to get off pred. because the older you get the worse it affect your b ody.
Beverley
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-05-02 02:46

Beverley,
Diabetes can be a terrible disease. I did my PhD thesis on the mathematicial analysis of Insulin-glucose metabolism, and studied with elderly patients at SCGH as well as the children at the Hospital for Sick Kids, in Toronto. It is especially sad that it can be caused by a drug which was supposed to be doing your body good.

Please discuss the following two papers with your doctors. You can slow the advance of diabetic retinopathy (eye damage) and nephropathy (kidney damage) with a new type of blood pressure drug called "Sartans"

Good news for patients with type 2 diabetes- angiotensin receptor blocker treatment delays progression of diabetic nephropathy

Retinal Neovascularization (retinopathy) Is Prevented by Blockade of the Renin-Angiotensin System

There are a number of links at the bottom of this page to recent scientific papers about the use and (in)effectiveness of corticosteroids to 'treat' sarcoidosis. I would draw your attention to the Cochrane Review which concluded that inhaled steroids had little or no effect on the prognosis for sarc patients. They apparently do help if you have airway restriction. You may wish to discuss this article with your doctor.

Welcome to SarcInfo,
..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Di (---.in-addr.btopenworld.com)
Date:   06-05-02 06:57

Trevor and everyone,
Despite being hugely reluctance, I have had to give in and take prednisone. I did try not to, but got to the point where I had to sit down and catch my breath before I could make it up a flight of stairs. My doctor is anti-steroids, fortunately, and will take me off as soon as possible. I would like to find alternatives, I looked at the CMO site but was worried by the source of the treatment - beef products/derivatives have a bad name in Britain. I also note that it was this product that tried to spam this site. Please could you let me know if there are any books/sites on other treatments.
I do control my diet, I had my gall bladder removed a couple of years ago and at that time my cholesterol was high, so I follow a low fat/cholesterol diet, I also have problems with IBS (increased by the gall bladder removal) and diary intolerance. Consequently my diet is already quite restricted, but I would welcome further advice.
The information on the site is very useful, I have also experienced itching, and last year got sun hives which I had not suffered from in the past. I will take your advice and stay out of the sun as much as possible.
I have some lumps in my mouth which came up a couple of years ago. I was offered a biopsy but they are directly over a nerve and I was told this could lead to tingling and/or numbness, possibly permanent. I declined, and lived with the lumps. I have noticed that they have slightly reduced in size since I started the prednisone, is this just an anti-inflammatory effect or do you think the lumps are sarcoidal? The dentist did say they were on an old injection site, and I read your item on a possible link to dental treatment.
I am aware that once you have a diagnosis it is tempting to atribute all symptoms to the known cause, but sarcoidosis does seem to involve almost everything, except a cure!
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-05-02 07:48

Di, stairs are always a problem. You've got to strategize before attacking them, try to plan it out so that you don't end up gasping for breath halfway up, making everybody around you concerned. Since you are in the UK you will know the underground is the worst, although there usually are elevators around if you have a minute or two spare.

The choice to take your chances on prednisone is a personal one. You now have access to much of the data through the links on this site. Some people choose to try and keep their short term lifestyle while they can, others plan for the future. It is 35 years since my Xrays first showed lymph adenopathy and 25 years since they were Stage III, when some doctor gave me 18 months to live. Yet today I am on top of the world, never felt better, having a ball, and looking forward to the next 30 years. Would I still be here if I had used prednisone? Hard to tell. It's never worth second-guessing the past. Always concentrate on the future.

The lumps in your mouth may be scar tissue, only a biopsy would show for sure. If they are not causing any trouble then leave well enough alone, I would say...

We are a lot closer to a 'cure' than you realize. By that I mean we will have a method of controlling the underlying immune dysfunction within the next decade.

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Ken (---.proxy.aol.com)
Date:   06-05-02 20:09

ONE good thing about prednisone and I mean the ONE good thing, is that it leaches excess calcium from the human body. This coming from a sarc that has had multiple bone fractures may seem strange but I have struggled with why so many of us felt better after the initial dose of pred. Our sarc bodies have documented issues with processing calcium, thus the need and concern about sunlight etc. If you had a Ct-Scan and if you have the Radiologist Report you will see that one of the comments concerns "sites of calcification". These abnormal deposits make the lung tissues more rigid, less flexible and breathing more difficult. The 'leaching effect' as I see it makes us sarcs feel better, we can breath again like something really has improved. But this is VERY SHORT lived, medically nothing improves. Beyond this immediate and medically insignificant change I do not believe that prednisone actually does anything to help long term. I am not a doctor and this should only be discussed with your doctor. This is only my oppinion. Best Regards- Ken
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-05-02 20:19

Ken,
The calcium metabolism is upset by the excess 1,25 Dihydroxyvitamin D3 manufactured in the granuloma/macrophages. There are better ways emerging to go after this hormone than by hitting the body with a corticosteroid. Give it a few more months for the new treatments to evolve...

You have a very good point - why does the Medical Profession dare to say "you have normal calcium tests" and then talk about "calcification" on your Xrays and Calcium deposits into the kidneys (kidney stones). There is a disconnect in conventional comprehension of calcium metabolism that we should try to help our doctors understand...

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Caroline (---.win.org)
Date:   06-17-02 08:14

Hello All,
I was searching for a thread to pose a medication question. I have taken prednisone both for my eyes (to calm a raging threat to my sight) and also for pulmonary reasons. Pred did what it was intended t the time.

For the neurological sx. pred helped for a very limited time of maybe two weeks and then nothing but weight gain. I must say it was heavenly to be able to walk in an almost normal gait briefly.

My neuro has prescribed neoral (cyclosporin) which I am off currently since I experienced shaking chills. My new pulmonay doc questions why the neuro prescribed neoral and not methotrextrate since the documented success is greater with mtx. My web reasearch supports her position. Now I am unsure of which doctors opinion I should follow? Both can be very detrimental but my life as I feel now is much more detrimental to me.

I am going to step on toes, tactfully if possible but whose toes? I am unable to find a lot of documentation addressing either drug and it's success rate in neurosarcoidosis. If anyone has links addressing either drug or another medication I would really appreciate they be shared.

Thank you very much, Caroline
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-17-02 08:28

Caroline,
There are a few detailed studies that claim that Methotrexate has measurably reduced sarc activity, but very few and with very questionable methodology. That's why you haven't been able to find them

Can you define specifically why your "life as I feel now is .. detrimental"
Each of us have different symptoms which are more important to us than others, especially our doctors, might be able to see. You have mentioned eyes, gait and breathing, but can you be more precise? What are the major problems ranked in order of importance?

..Trevor..
ps: Even if those problems posted somewhere already on the forum I wanted to get your current thoughts concisely into a neat bundle here...
 
 Re: Why do doctors insist on prednisone therapy?
Author: Diane (---.proxy.aol.com)
Date:   06-17-02 21:30

Hi Everyone,
I just came from my latest visit with pulmonologist. I was kind of disappointed. I went there with lots of information and lab work that I felt needed to be drawn and she kind of blew me off. She stated I didn't need these labs done at this time. I started on 60mg for 2 weeks starting on May 1st and have been on 40 mg. since. The prednisone has helped my breathing and my eyesight has improved but the weight gain and moon face etc. is something else. I still challenge the stairs or should I say they challenge me.
I am trying to walk everyday which seems to help as long as the sun is not out. Oh I even brought that up to the Dr. about the sun and sarc pts. She just said alot of people are having problems with the sun right now. and left it at that. I want to get myself off this prednisone asap. She wants me to continue on 40mg for 6 weeks. She knows I am a nurse and she knows I research everything. I really appreciate this site because I learn so much. I have made a notebook for myself. I am going to go to my primary Doc and have them draw these labs for me. I know they will do that for me. I also have develop this acne or rash on my face is that also due to the pred therapy or is this part of the sarc also. Thanks so much for being here.--------Diane

 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-17-02 21:41

Diane,
Isn't it strange how pulmonologists, who should be the most knowledgable, are often the most resistant to new ideas

You are doing exactly the correct thing You spent all those years studying how the body works, now you can use that training to put all the new knowledge together. A notebook is a brilliant idea. With tabs, so you can find things when you need them.

Changing doctors is always heart-wrenching. But it has to be done. If a doctor won't communicate and explain things to you, and if he/she can't actually ease your suffering, then it is time to change.

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Caroline (---.win.org)
Date:   06-17-02 22:59

Hello Trevor,
In my previous post (yep, complaining) I said my health is as detrimental as some of the drugs. You asked me to be more specific of symptoms. Here goes-- my specific "can'ts":
...Walk, even through my home, without holding on to furniture or the walls, my feet won't lift much more than a half inch or so off the floor. My legs feel like they are encased in concrete. At times my legs are so stiff even the baclofen doesn't seem to touch it.
...Daily my feet either hurt mildly, hurt very painfully, burn, tingle are somewhat numb, etc. This lasts all day in one form or another - sometimes with all.
...Unable to see well enough to drive, so I am dependant on others.
...Left forarm in varying degrees of pins and needles, numbness and weakness. This can change at the drop of a hat.
...Winded with nothing more than walking to another room (holding on of course). Pain in the chest that moves front to back.
...I feel I need a nap after a shower, it is so tiring.
...My hands: first the right and now starting in the left, hurt so much I am awakened from sleep at night with pain. Some of the knuckles are enlarged and one has a painful nodule.
...The joints of my toes are becoming painful also. Especially when I first get up in the morning I dread standing, it is very painful. Generally this remits after a few hours.
...My back hurts (mildly) about half of my waking hours. Might not have anything to do with the pain but I have osteopenia from prednisone.
...Both knees are painful and if I get on my knees, I am unable to get back up without help.
...I need to walk a little 'hunched' forward. I generally feel I will fall backward if I don't.
...Muscles 'uncomfortable' throughout much of the day. All muscles but mainly upper arms and the front of my thighs.

Now, I bet you are sorry you asked! I am so very thankful for my wonderful husband. He takes care of everything in and outside our home, never complains and is always here for me.

Also, I have read with great interest 'Stay out of the Sun'. I have not been able to personally document exacerbations with sun exposure. Mainly because I am not outside other than a very short ride to church on Sundays and if I had experienced problems, never put two and two together. So this past Sunday the weather was perfect and I deliberately sat in the sun for quite some time while my daughter bar-b-qued. I will intently be following how I feel.

Thank you for this forum, Trevor.
Caroline
 
 Re: Why do doctors insist on prednisone therapy?
Author: Caroline (---.win.org)
Date:   06-17-02 23:08

Hello,
This is my only find giving statistics per the medication. I wonder what is deemed to be a 'success'?

DIAGNOSIS AND MANAGEMENT OF NEUROLOGICAL SARCOIDOSIS
Abstract:
BACKGROUND: Neurological involvement is a significant cause of morbidity and mortality in patients with sarcoidosis. Detection and management of neurosarcoidosis remains problematic. Our interest in immunosuppressive agents for chronic sarcoidosis has given us experience with various agents for the treatment of sarcoidosis, including cyclophosphamide and methotrexate.

METHODS: We analyzed all patients with sarcoidosis seen in our clinic during a 10 year period. Evaluation for neurological disease included routine physical examination. Magnetic resonance imaging, cerebral spinal fluid analysis, and neural tissue biopsy were performed where clinically indicated. Patients were treated with corticosteroids, methotrexate, or cyclophosphamide.

RESULTS: Neurological disease was identified in 71 of 554 patients with sarcoidosis. Seventh (facial) cranial nerve paralysis was the most common manifestation identified in 39 patients. This included 24 patients with facial nerve palsy as the only manifestation of neurological sarcoidosis in whom complete recovery was seen in all but 1 patient. Forty eight patients with disease other than facial nerve palsy received corticosteroids or other therapies.

Corticosteroids benefited only 14 patients (29%). Methotrexate successfully treated 17 (61%) of 28 patients and cyclophosphamide controlled disease in 9 (90%) of 10 assessable patients. Methotrexate and cyclophosphamide were each associated with a higher response rate than corticosteroids alone (chi 2, 14.6; P < .001).

CONCLUSIONS: Neurological symptoms can be significant manifestations of sarcoidosis. Facial nerve paralysis is a common, but usually self limited form of disease. Other manifestations are usually chronic and agents other than corticosteroids appear to have increased efficacy with lower morbidity.

Author:
Lower EE, Broderick JP, Brott TG, Baughman RP
Address: Department of Internal Medicine, University of Cincinnati Medical Center, Ohio, USA.
Abbreviated Journal Title: Arch Intern Med
Date Of Publication: 1997 Sep 8 Journal Volume: 157
Page Numbers: 1864 through 1868 Country of Publication: UNITED STATES
Language of Article: Eng
Type Of Article: JOURNAL ARTICLE
Issue/Part/Supplement: 16 ISSN: 0003-9926
MESH Headings:
Central Nervous System Diseases (Central Concept), Chronic Disease, Cyclophosphamide, Human Immunosuppressive Agents (Central Concept), Methotrexate, Prednisone, Sarcoidosis (Central Concept), Treatment Outcome
Chemical Abstract Service Registry Number:
0 (Immunosuppressive Agents) 50-18-0 (Cyclophosphamide); 53-03-2 (Prednisone), 59-05-2 (Methotrexate)
Article ID: 97435879
Research Source: MedLine


--------------------------------------------------------------------------------
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-17-02 23:33

Caroline, The best studies are so called "double blind" studies, where a proportion of the patients are given sugar pill (placebo). These studies are harder to 'bias', harder to make the results say what you think they should say.

There is such a study "Methotrexate is steroid sparing in acute sarcoidosis: results of a double blind, randomized trial". It noted that "The difference between methotrexate versus placebo was not seen when all patients .. were analyzed". That is medical language for 'there was no difference in outcomes for patients treated with sugar pills or methotrexate'.

Pulmonologists often complain that double blind studies are not suitable for sarcoidosis because a proportion of the patients get sugar pill instead of treatment. The supposition is that prednisone would have helped the patients given sugar pills. This indicates that the researchers were biased before they start, and even then they have great difficulty in proving significant efficacy for any of these drugs.

Every trial performed by the FDA has to be double blind for exactly this reason, so that the biases of the researchers do not affect the results.

..trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-18-02 08:24

Caroline,
Loss of independence is so soul destroying. I asked you to rank the symptoms in order of importance because it is so easy for a sarc patient to lose sight of the goal - one doctor pushes them this way, another doctor pushes them another. That is one hazard of our system of "specialists" who only look at a subset of the body's functions.

I am assuming that you are describing an inability to control muscles, and not weakness in the muscles themselves. It seems that the neuropathy is the #1 problem, exacerbated by pain, which is probably paresthetic pain.

You know that you have sarcoidosis in your system, and we can assume that there is still some active inflammation somewhere in your body. My approach is to accept that fact, and try and work on the possible effects one at a time. The approach of using prednisone and cyclosporine, I think, follows a philosophy of "suppress inflammation, no matter what the cost".

Clearly your brain is being affected by something. Maybe the brain tissue itself is damaged, but the symptoms would then tend to be more constant, not varying from hour to hour or day to day. Symptoms that vary in intensity usually result from biochemical mediation. You say that many of your symptoms vary by the hour, so let's look at what biochemicals might be in play.

The hormone that we know has a most profound impact on the brain is (dare I say it again) 1,25 Dihydroxyvitamin D3. The review "New clues about vitamin D functions in the nervous system" is a detailed summary of what is already known about how this hormone affects the CNS, and touches a little on the tremendous amount we are still learning. It is essential to monitor the levels of this hormone as an indicator of sarcoidosis macrophage activity.

The other hormone that we still know little about is Angiotensin II. Actually, Angiotensin II breaks down to Angiotensin IV, and it is this latter variation that has the most receptors in the brain tissue. "The role of angiotensin II in cognition and behaviour" looks at some of the ways in which Angiotensin affects the brain.

Both of these substances are secreted as a result of the inflammatory action of the macrophages in the granuloma. The other cytokines resulting from the inflammation tend to be more localized, and less active in brain biochemistry than either 1,25 Dihydroxyvitamin D3 or Angiotensin.

Angiotensin II can be suppressed by the use of the Sartans, a relatively safe group of drugs that are commonly prescribed for hypertension. Their use as anti-inflammatories in sarcoid requires more careful prescription, however, and your doctor will need some help in understanding how these drugs might help or hinder a sarcoid patient. My wife and I have written a manuscript that may help with this.

The Sartans have also proven effective at arresting the halt of diabetic retinopathy, and will also help your eyes heal

At this time there is no effective way to lower the 1,25 Dihydroxyvitamin D3 level with drugs. The only thing we can do is cut down our exposure to exogenous sources of Vitamin D, and/or reduce the number of active inflammatory macrophages.

Finally, I should clarify that "staying out of the sun" when applied to a patient with symptoms as severe as yours, probably means "stay indoors and wear dark shades at all times, even indoors". Unfortunately, partial adherence to this mantra usually does not work, as the body takes so long to recover between exposures. It's all or nothing... The paper on Vit D concludes by saying "it would be interesting to question the assumption that vitamin D synthesis occurs exclusively in the skin in view of the fact that eyes are also exposed to sunlight. This could lead to .. axonal transport of the prehormone to specific brain areas and by its neuronal metabolism, which .. could have behavioral and psychological consequences". Wearing shades and avoiding bright lights is, at least, one thing that should not do long-term harm to your body

I hope these ideas might be of some help, please ask any question that pops into your mind.
..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Admin (---.cu27.vnnyca.adelphia.net)
Date:   06-22-02 23:15

PREDNISONE IMPLICATED IN MEMORY LOSS AND REDUCED SENSE OF SMELL

There was some discussion about loss of the sense of smell, which I had said was most likely a side-effect of prednisone, as sarc itself tends to enhance one's sense of smell.

I have now found that loss of the sense of smell is indeed most likely another side effect of prednisone use - "taste and smell impairments have been described in patients with adrenal insufficiency or Cushing's disease .. Subsequent to glucocorticoid therapy, adrenal insufficiency can induce regressive olfactory hypersensitivity"

While we are at it, prednisone is now known to make your loss of memory even worse - "the risk of memory impairment should be carefully considered before initiating treatment with glucocorticoids"

..Trevor..
 
 Re: Why do doctors insist on prednisone therapy?
Author: Di (---.in-addr.btopenworld.com)
Date:   06-24-02 05:01

Trevor or anyone who can help,

I have now been taking pred. for a month for pulmonary sarc. and I have cut the dose to one a day. My GP is sending me back to the chest specialist and does not seem to want to get me off the pred. My impression of the specialist was that he was 'steroid-happy', he offered no alternative and, as someone else in this thread mentioned, issued warnings about the dire consequences of not taking the treatment.
I want to get off the pred, but when I stopped for just one day the symptoms returned. How do I manage the breathlessness etc without pred? My daily breathing rate has stayed between 300-340, and my last xray showed no change but the steroids have reduced the coughing and phlegm and made me more comfortable and able to cope.
I have read all the horrendous things that pred does and I really want to stop taking it. Please can anyone suggest how I do this and stop the symptoms returning.

Di
 
 Re: Why do doctors insist on prednisone therapy?
Author: melissa (---.hvc.rr.com)
Date:   01-27-03 07:13

i know your post is close to a year old, but just came across. i was wondering if you could tell me "what your symptoms, etc. were when you had your reoccurence." i was dx'd in 1981, never quite felt right, even though i was told several months after dx's i was fine now, that it'll probably stay away or it could come back, they just didn't know.
Then in 1995 while being under great physical and mental stress i became horribly ill. my dr. at the time did not have my older med. records, so he didn't beleive my earlier dx's. but i'm wondering if it could be the sarcoid. i was dx'd with fibro, and many other things.
 
 Re: Why do doctors insist on prednisone therapy?
Author: Meg (---.188.244.147.euc.wi.charter.com)
Date:   01-27-03 14:52

Dear Melissa,

Sarcoidosis pain can be similar to that of fibromyosis. You didn't mention Prednisone but since you posted this on the Prednisone thread, I'm going to assume you were given it with your initial diagnosis. A relapse in your sarcoidosis symptoms is certainly a possiblity.

Sarcoidosis does sometimes go away with or without treatment and it has long been postulated that the reason it sometimes "spontaneously remits" is because the antigens (bacteria) are somehow cleared from the body. The microbes may be of the short-lived type that eventually die off, removing the trigger, or the body is successful in eliminating them.

Corticosteroids (Prednisone) don't measure up very well in their effect on outcome of the disease. Dr. Marc Judson, in his hypothesis on using corticosteroids to treat sarcoidosis, said, "Relapses occur in 20 to 50% of patients in whom corticosteroid therapy is discontinued." He recently noted on the MUSC forum that "prednisone does not cure the underlying disease."

The relationship of relapse to corticosteroid therapy is well documented. According to National Jewish Hospital:
"Relapse occurred frequently in patients with sarcoidosis who had been treated with corticosteroids, and rarely occurred in patients who had not been treated with corticosteroids in the past.

According to docguide.com: Prednisone is used only because there is nothing else for sarcoidosis. It makes the patient feel better (for a while), but doesn't improve lung function.

In a JAMA on discussion of corticosteroid therapy in pulmonary sarcoidosis: "There are no data to suggest that corticosteroid therapy alters long-term disease progression"

The most important thing you can do for yourself is to get your D-metabolites tested. This will tell you if you have a current inflammatory process. If your recent symptoms are due to sarcoidosis, you can get better.

Meg
 
 Re: Why do doctors insist on prednisone therapy?
Author: Marilyn (---.buf.adelphia.net)
Date:   06-17-03 09:03

Dear Melissa,

I haven't been officially diagnosed with sarcodosis. My doctor wants me to have a lung biopsy first. I refused. I have all the symptoms of this disease. I know I have it. I been off predisone for 2 wks. I started on 10 ml 2wks, then went down 5 ml for 2 wks & then stopped it. When I stopped I felt like I had the flu. Today is the first day I feel better. But I did feel better on the predisone. I go back to the doctor on Thursday. I know he going to suggest going back on it. I really don't know what to do. He told me predisone is the only drug out there that will help get rid of the inflamation in my lungs. I agree with everything you say about this drug. I absolutely hate it.
 
 Re: Why do doctors insist on prednisone therapy?
Author: Meg (---.188.232.59.euc.wi.charter.com)
Date:   06-17-03 16:26

Dear Marilyn,

Welcome to SarcInfo. Doctors like to get a biopsied tissue diagnosis before they prescribe a drug as addicting and dangerous as Prednisone. Treatment with steroids is likely to be on a long-term basis and most docs won't go down that road without knowing for sure that you have sarcoidosis.

But you don't need a biopsied diagnosis to start taking medication as safe as the ARBs and antibiotics that Trevor recommends.

The simple test your doctor needs to order is the 25-D and 1,25-D metabolites. This will give you a baseline level of your inflammation to gauge your progress as you proceed to block the inflammation with ARBs and then elimimate the microbes with antibiotics.

Perhaps you can educate your doctor by printing out the Papers for Physicians from this site. Surely he knows that Prednisone does not cure sarcoidosis. If you cannot convince him of the validity of this protocol, you will need to find another doctor. Lots of us have had to do that. It may take some time, energy and money but your health is at stake here.

Please let us know how you get along.

Meg
 
 Re: Why do doctors insist on prednisone therapy?
Author: Frostbyte (---.bay.webtv.net)
Date:   01-09-04 19:30

{Hiya again, sticking my muzzle into another topic I have two cents to spend on.

I was prescribed a week's ration of Naproxen and Prednisone. Previously, full bottles of each, if my memory serves me, which these days, it doesnt.

Naproxen's absence, I was able to do a little reading on and found it's over-the-counter version "Aleve".

They took me off both so they could have a readable whatever for the bronchoscopy and tissue sample of my lung lymph problem, but I'm not gonna live in pain, counting the days to the appointment(s)!

Prednisone from the sounds of it is a nasty one, but confusing.

Prednisone/Sarcoidosis/and Side Effects of either or both all seem too similar! Wha is causing what? I hate feeling like this and I want to know if there's anything I can do about it?}


"We choose the hardest lessons before we live, then wonder what we were thinking, as we try to live through it all. Maybe I don't want to build character or be stronger."
 
 Re: Why do doctors insist on prednisone therapy?
Author: Meg (---.115.74.164.euc.wi.charter.com)
Date:   01-09-04 20:35

Brian,

There's nothing confusing about Prednisone when it comes to Sarcoidosis. It isn't a cure, it has nasty side effects, it causes relapses, it's addicting and it can have dire consequences of long-term use such as diabetes, cataracts, osteoporosis and avascular necrosis. Taking Prednisone is like making a deal with the Devil. You may feel better for a little while but you'll pay in the end.

Naprosyn, an NSAID, is the generic name for Aleve. Both are available OTC. The generic brand will be cheaper. It's okay to take an NSAID to relieve your pain. But this is a bit like putting a bandaid on a cancer.

All the symptoms you mentioned will resolve if and when you get on the Marshall protocol. Please read the tutorials and the starred threads.

Let us know if you have any questions that aren't answered there.

Meg
 
 Re: Why do doctors insist on prednisone therapy?
Author: Scared and Confused (---.dyn.optonline.net)
Date:   08-29-04 18:43

I am desperately looking for some advice. I am 29 years old and have been diagnosed with sarcoidosis this July. I've been put on 60mg of prednisone a day, along with prevacid and bactrim. The side effects of the predinisone seem intolerable (major mood swings, lack of memory, swelling in the face, i'm starting to grow facial hair now, teeth feel weaker, i'm just not the same me...) ( the only thing i must admit, is that the major swelling i had in my legs and feet, which caused me to go to the hospital in the first place, and was unable to walk for almost 2 months have gone away. my legs and joints are alot better now).

My doctor states that I have to remain on the medication for 6 months and if all goes well, i'll be taken off. I'm not sure if i should continue on with the meds since i'm feeling better. Is there any other alternative? Will there really be a chance of me getting worse being OFF the meds...

This is all new and confusing to me, PLEASE HELP!
 
 Re: Why do doctors insist on prednisone therapy?
Author: Meg (---.117.101.148.euc.wi.charter.com)
Date:   08-29-04 19:55

Hi Scared and Confused,

Welcome to SarcInfo. What your doctor has ordered is the old, standard treatment for sarcoidosis. It NEVER cured anyone. As you are finding out, the side effects of prednisone can be brutal. It's a heavy price to pay for partial symptom relief. Prednisone at that dose is extremely toxic and addicting. It can cause avascular necrosis, the death of bones, in as short a time as a few weeks. Click here and scroll down to read JudyV's post of 2-15-04. Long-term use of prednisone causes diseases like diabetes and osteoporosis that can be worse than sarcoidosis.

We now know that bacteria cause sarcoidosis. Taking prednisone is contraindicated for a chronic infection because it suppresses the immune system and allows the bacteria to multiply. That's why symptoms are worse when you stop it.

The Marshall Protocol is a novel, safe treatment plan that is putting sarcoidosis into remission. You can read some of our success stories here. It will take you some time to learn, but all the information you need to get well safely is on this website. There are papers for your physician and he is also welcome to call Dr. Marshall whose phone number is on those papers at the top of this page.

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: Why do doctors insist on prednisone therapy?
Author: Tanya (---.proxy.aol.com)
Date:   11-09-04 05:22


Belinda

I just want to say how relieved (but sad) to see that I am not the only one having been pushed down the Prednisone route by an over zealous Physician.

My experience was much the same as many others. I left the hospital in a terrible state. Images of my lungs in god knows what state and the words "you will not be able to breath unaided" ringing in my ears. I could not believe someone with as much experience of Sarcoid as this Specialist claims to have, could try to terrify me into taking a Steroid that is known to do more harm than good. However it seems that so many Doctors, Specialsits think the same way. I was told by a top Immunologist that "steroids are wonderful". Well I will not be bullied into taking them. YES I have Sarcoid, YES I have been through hell and back but remarkably since being diagnosed in June, I have not got any worse infact recently more and more frequently I am going days without any painkillers where back in April I was practically living on Tramadol! I still have painful migraines, leg cramps, terrible digestive problems, chronic fatigue and irritabilty but can't help imagining how worse it could have been......if I had accepted the prescription for Prednisone back in June when yet another Specialist told me how great this drug is! Had I not found this site and insisted on a second opinion....I really dread to think!

I will be starting MP in a few weeks and despite all of the skeptisim I have recieved I will never be bullied into taking a drug that has shown no evidence of curing or even remotely help this terrible illness!

God bless you all,

Tanya

PS. I was able to play Basketball with my son for the first time in months last weekend, and that's without any treatment but simply watching my diet, sunlight and having faith!!!

" The lasting changes we make for ourselves are the only permanent ones ".
 
 Re: Why do doctors insist on prednisone therapy?
Author: Ray Williams (---.proxy.aol.com)
Date:   11-11-04 13:23

I have had sarcodosis for over 25 years. In 1978 I was placed on high dosage prednisone. I was in the military. Prednisone is bad news. I wish I had knowed that at this time. The side effects are horrible. As a result I have paralyzed left and right diaphragms. I have facial paralysis, peripheral neuropathy, neurosarcodosis. In 2002 they tried to put me on prednisone for neurosarcodosis. I refused. I feel that there is no treatment for sarcodosis. My faith has carried me far. I am 64. I received 100@ disability from the Veteran Administration. You can live with out prednisone. Keep tab of your PFT's. Check your eyes. Prednisone can work on them. Hope this helps someone. Doctor don't know all the answers.
 
 Re: Why do doctors insist on prednisone therapy?
Author: Meg (---.190.172.91.eau.wi.charter.com)
Date:   11-11-04 15:06

Hi Ray,

Welcome to SarcInfo. I'm sorry that you have received the standard treatment for sarcoidosis and are now suffering the hideous side effects. Keep in mind that the studies showing bacteria within the granulomatous tissue are not new and they are still being ignored by the experts.

You said, "there is no treatment for sarcodosis". Most of the people reading this website would disagree with you. You'll find inspiration in our Success Stories thread.

The Marshall Protocol is conquering this disease safely at long last. I urge you to ask your doctor to help you improve the quality of your life by helping you with the MP.

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: Why do doctors insist on prednisone therapy?
Author: Kevin (---.newt1.ct.charter.com)
Date:   12-01-04 09:12

I went to see a sarcoid "specialist" at Yale 3 weeks ago. She did not have all of my medical records at the time of my visit. She said she would wait to see those before recommending treatment. She sent me to an Endocronologist. I have had very high Calcium levels since being dx. with Sarcoid. I was receiving 90mg doses of Aredia though IV infusion about 2 x monthly for hypercalcimia. That would seem to make my kidney functions poor.
The Endo. Dr. prescribed 10mg of Pred for the Hypercalcimia...has anyone ever heard of this? My calcium tests were fine after 2 weeks on Pred....
anyone else dealing with Hypecalciumia due to Sarcoid? If so what treatments have worked...? thanks...Kevin
 
 Re: Why do doctors insist on prednisone therapy?
Author: Caroline (---.dsl.stlsmo.swbell.net)
Date:   12-01-04 10:34

Kevin,
Patients with sarcoidosis experience Symptoms of Hypervitamintosis D. Reducing the high level of 1,25D will reduce your symptoms. You can do that by avoiding foods and supplements containining Vitamin D and also protecting your eyes with Noir sunglasses to block UVA, UVB and InfraRed (IR).

Prednisone is the wrong treatment for sarcoidosis. Compromising your immune system allows the Cell Wall Deficient Bacteria to grow and multiply therefore making you more ill.

What treatments have worked? The Marshall Protocol currently has about 300 patients experiencing a 98% success rate of remission. Your physician will be unable to produce any studies with results of remission using steroids or any immunosuppressive drug. Also, sarcoidosis does not go away on it's own: Sarcoidosis, Lessons Learned From the ACCESS Study and NIH Study Shows that Sarcoidosis Does Not Go Away.
Caroline

Sx.95, iritis 96. Pred. to 3-01. Pred., IV Medrol, MTX,neoral end 02, Dx. Neuro w/Cardiac sx, severe hip and hand pain, M-9-02, Benicar 12-02. MP-I Jan. 03. 1,25 D 58. Cardiac, & joint pain resolved w/MP-1. MP-II Feb. 04. Oct. 04, 25D=10, 125-D=34
 
 Re: Why do doctors insist on