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 The material here provides useful background, but much of it is now out-of-date.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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 DO NOT POST HERE - archived - Has Prednisone Helped?
Author: Dorothy S (---.roadrunner.nf.net)
Date:   07-12-02 12:41

>>>Notice from Admin - New data on steroids causing hip and joint failure may be read by clicking this link<<<

>>>Notice from Admin - Explanation of why Prednisone can be a deadly treatment for sarc - click this link<<<

I have just been diagnosed with Sarcoidosis and I have been prescribed 40 mg of prednisone per day. My symptoms are: grandulomas in lungs, inflamation of the joints, eye problems, red spots on my face, head, legs and shoulder and shortness of breath.

What I have been reading on this and other sites is that prednisone doesn't seem to help anybody. Is there anybody on this forum that it has helped?

I would like to know how it has improved your condition? If not has it worsened the problem?

If it doesn't help, why is it being prescribed?
 
 Re: Has Prednisone Helped anyone
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-12-02 13:25

Dorothy,
I was put on Prednisone for 18 months in 1980 at an average of about 20mg per day. This was supposed to improve my Pulmonary Function Tests. It did lower my serum ACE level to 19 (from the usual 60 or so) and did make the Xrays clear up a little, but nothing really spectacular. It did absolutely nothing to improve my PFTs or my neuro symptoms and so I stopped it in 1981.

I was again put on about 20 mg prednisone in 1991 to 'fix' the neuropathy that was causing my right thigh to go numb. Again it lowered the ACE and slightly improved my Xrays, making my doctor very happy indeed. It did nothing whatsoever for the neuropathy, and after about 6 months I changed doctors to one who did not insist on me continuing to take the stuff.

My PFTs stopped their downward slide in the late 80's, when I realized that solar exposure was exacerbating my symptoms and started to be more careful. They have been essentially constant since then, as have my Xrays. The Neuropathy cleared up about 2 years ago, after I finally got control of my Vit D metabolism.

So, if you are a physician administering the stuff it seems to work wonders, but the patients usually have a different perspective. Additionally, physicans do not stay around to see their patients suffer from all the illnesses that prednisone brings on as one gets older...

..Trevor..
 
 Re: Has Prednisone Helped anyone
Author: Dorothy S (---.roadrunner.nf.net)
Date:   07-12-02 15:56

Trevor,

Thank you for your response, however being new to this (just diagnosed yesterday) I don't know what ACE and PFT's are, can you explain these?

Also what can I do to improve my condition without taking prednisone?

I started taking prednisone yesterday and all of my pain has disappeared and my eyesight seems to have improved slightly. So far I think it is great, but if it won't help get rid of the sarc and only mask the symptoms then I have to consider if it is worth taking the prednisone.

I would appreciate any comments from those who have gone through this and have had good results as well as bad. That way it can help me make an educated decission.

Dorothy
 
 Re: Has Prednisone Helped anyone
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-12-02 20:31

No, No, You don't understand. If you were taking Morphine, like Cher, it would similarly reduce your pain, but would be 100 times less addictive.

Prednisone kills slowly. It gradually loses control and you gradually increase your dosage until every organ in your body is in trouble.

Take a look at the discussion on RxList. Take a look at what this drug has done to some of the poor souls over there...

..Trevor..
 
 Re: Has Prednisone Helped anyone
Author: Anthony (---.bc.hsia.telus.net)
Date:   07-13-02 05:38

Hi Dorothy

I have been on Prednisone now for 14 years it has not done me any good at all now i have a new set of Dr's and they plane to change me on to Methotrexate ? i think that is the way they spell it ,any way it will not be any worse than Prednisone, All the best .

Tony
 
 Re: Has Prednisone Helped anyone?
Author: Alice (---.tnt2.rome-utica.ny.da.uu.net)
Date:   07-13-02 20:31

Dorothy,
Sounds like I'm one of the few, but prednisone is working for me. I have been on it for 7 years now. My dosage has varried 40 mg initially to 5mg now. Without it I have terrible joint pain, low WBC, high calcium, high ACE level (256). I have routine bone densities done and they are above average. I do not have lung involvement. My only problem now seems to be with kidney stones. Otherwise I feel 100% better than I did 7 years ago.
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-13-02 21:04

Alice,
Have you had the kidney stones checked? They are usually calcium oxolate, a sign of upset 1,25 Dihydroxyvitamin D3 metabolism.

Some of the things you mention as attributable to prednisone are not accurate. For example, prednisone does not raise the WBC. No way. Have your doctors tried to wean you off the drug now that your symptoms are under control? Sarcoidosis does goes into remission, and the stated aim of all prednisone treatment is short term use (less than a year) to bring about that remission. Long term use, even at the doses you are using, might eventually bring on avascular necrosis and muscle myopathy and all sorts of other illnesses besides the well-documented bone density changes (which your physicians are obviously keeping an eye upon).

IMO, joint pain is not a sufficient reason to take pred, there are plenty of safer drugs to deal with that.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Alice (---.tnt1.rome-utica.ny.da.uu.net)
Date:   07-14-02 20:48

Trevor,
I have had the stones tested. They are calcium oxalate. My 1,25 dihydroxyvitamin D3 levels are OK. This spring a nephrologist started me on allopurinol, slo-mag, questran, as well as continuing the prednisone. Most of these I believe are to try to keep the calcium out of my kidneys to prevent the stone formation. I have had a problem with high blood and urine calcium levels since my sarc dx 7 years ago, and started developing the stones about 4 years ago. Any other suggestions??

The sarcoid seems to affect my blood primarily. Lab results seem to relate directly to the prednisone dose I take. I did wean off it for a couple months but almost all my lab results returned abnormal. My WBC does go down, calcium goes up, and ACE goes up when the prednisone dose is decreased. And all seem to return to WNL when the prednisone is restarted/increased. If there is a way to keep the labs in check, that would be great. I'd love to be off the prednisone. I could handle the joint pain.

Thanks for your help.

Alice
 
 Re: Has Prednisone Helped anyone?
Author: Di (---.in-addr.btopenworld.com)
Date:   07-15-02 03:54

Trevor,

I'm taking 5mg of Pred. a day at the moment, except this Monday morning when I just forgot. I'm feeling OK altho' some of the pulmonary sx have returned. I'm inclined to reduce to zero, perhaps by going to one every other day, etc. The GP reported no change in the last tests he did compared to those from before I started the Pred, but I do feel better. If I come off Pred, how do I tackle the D3 level problem, apart from staying out of the sun, something its been easy to do so far this year (lots of rain, no sun... the British summer).

Di
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-15-02 05:35

Alice,
A high WBC usually means that there is active infection in the body. Low WBC are uncommon, but low WBC can be caused by bone or marrow damage. This could be consistent with the calcemic dysfunction you mentioned. Your doctor should be looking into this closely, especially in the light of the recent discoveries that sarc inflammation can be triggered by bacteria.

The way that prednisone suppresses the immune system is to manufacture a protein that binds with the RNA transfer-factor "NuclearFactor-kappaB" in the cytoplasm of lymphocytes and monocytes, and which stops the NF-kappaB from migrating into the cell nucleus. This stops the body (amongst other things) from being able to manufacture the Th1 cytokine cascade that is used by the macrophages to digest old and invading tissue. It shuts off the body's immune response. This normally has the effect of reducing the WBC.

If you are still producing kidney stones then the hypercalcemia has not been fully suppressed. I am not happy with the explanations in the literature for the action of prednisone on the calcium homestasis. It seems to neglect the profound actions of prednisone on NF-kappaB, as much of the 1,25 Dihydroxyvitamin D3 that drives your hypercalcemia is manufactured in the active macrophages. The 1,25 Dihydroxyvitamin D3 is a direct proxy for the calcium metabolism in-vivo.

You mentioned that the 1,25 Dihydroxyvitamin D3 levels were 'normal'. Can you be more specific about the actual value (eg '40 picograms per ml') and whether it fluctuates from test to test?

Angiotensin Converting Enzyme is secreted by the epithelioid giant cells (granuloma) as part of the inflammatory cycle. ACE causes Angiotensin II to be synthesised, and A-II then binds with the protein receptors in the giant cells to produce the Th1 cytokine cascade mentioned above. A high level of ACE being manufactured by the macrophages means very active inflammation. Again, a bacterial genesis should be vigorously excluded by the use of antibiotics, probably more than one family.

I am sorry I can't be more specific than this. I am a researcher, not a clinician, and you will have to rely on your doctor (or the literature) to determine how common it is for pred to raise the WBC. IMO, it could indicate damage to the bones or marrow, something that should be pursued aggressively, especially if there are still signs that the prednisone is not totally suppressing the calcemic unbalance (eg continuing kidney stone formation or deposits into the soft tissue visible on Xrays).

Keep Smiling,
Trevor
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-15-02 07:59

Alice,
I stumbled across a really interesting document: "FREQUENTLY ASKED QUESTIONS ABOUT ANTIBIOTIC THERAPY" while I was randomly looking around for WBC stuff. It says:
"White blood cells are used to fight infection. A low white blood cell count is clinically called leukopenia. This occurs when there is a reduction in the normal number of circulating white blood cells in the blood stream. This condition involves the blood and the bone marrow.. This can be due to the nature of their illness, or previous therapy such as methotrexate that causes suppression of white blood cells, platelets and red blood cells. This is caused by increased destruction or impaired production of these cells. Poor quality protein intake or digestion (impaired pancreatic enzyme or HCI production), inadequate trace mineral or essential fatty acid intake are other causes.

A blood test called the Carbon test is enormously helpful at determining the cause of the decreased WBC. The company Body Bio (888-320-8338) can provide a clinician that can perform the test in your area."

Body Bio's website looks fairly fringe (not totally 'mainstream' medicine) but it might be worth calling them and seeing if this testing of theirs could add any useful indicators to your standard blood panel.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Caroline (---.win.org)
Date:   07-18-02 21:09

Hi Dorothy, In answer to your question regarding prednisone: for me oral pred. along with pred eye-drops and finally kenalog injections halted the progression of iritis (eye inflammaiton). right now the inflammation is quiet the direct cost initially was a cataract and some weight gain.

when pred. was prescribed for pulmonary sx., it quieted the inflammation. at that time i had 6 thumb size granulomas on x-ray and very labored breathing. this was the time of diagnosis and at stage 4. i then was given IV solumedrol (methylprednisone) for the neurological sx. which had prevailed since 1996 but i hadn't been 'officially' diagnosed.

so from mid 1996, i have gained close to 60 pounds. i feel as though i have been 'gut-shot' from taking steroids. i feel generally weak but that could be the sarcoid. i have diagnosed osteopenia. just went today to find out if it has crossed the line and i now have osteoporosis. i am only 53.

in addition to the sarcoid drugs i have to also take zantac, diuretics and actonel for bone thinning. i should also be taking a lot of calcium, but now am not to take supplements as i am on methotrexate. personally, and i am not giving advice, it would have to be a very serious situation and a lot of convincing before i would ever allow myself to ingest prednisone. the side effects are terrible.

best of luck to you, caroline
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-18-02 21:57

Caroline,
Taking the calcium would make no difference to your bone density. Take a look at "Increased calcium intake does not suppress circulating 1,25-dihydroxyvitamin D in normocalcemic patients with sarcoidosis". Calcium supplementation does not work the same in sarc patients as it does in normals.

Further, the abnormal 1,25 Dihydroxyvitamin D3 metabolism itself is probably at the heart of bone loss in sarc, and prednisone probably makes things worse primarily by blocking the actions of NuclearFactor-kappaB, which is essential for proper bone biology.

I am sure you don't want me to offer advice about the MTX...

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Denise Testa (---.connect.com.au)
Date:   07-18-02 22:04

Prednisone has helped me but I have never been on it for more than six weeks at a time. Australian doctors are very reluctant to prescribe it anyway. I have been on a reducing dose of it before.

It does have its down sides for me, unable to sleep beyond 3 am at doses over 10 mg, bruising can be tons of times worse and your resistance to infection is lowered.
On the up side it makes me feel better in myself and kills the pain within a day or two and lets me function again.

Some patients get into a catch 22 situation with prednisone. My Uncle for instance had severe diabetes and bronchitis while at the same time having emphysema and lupus erythmatosis.

He had to have prednisone tablets and inhalant every six hours for his emphysema - to help him breathe. BUT and there is a big one here, this would have helped the emphysema and lupus while concomitantly making the diabetes worse and lowering his resistance to lung infections. He got these often and the circulation in his lower limbs was so bad he was in constant severe pain and unable to walk. He died this way. So either way he would have died with or without prednisone, one could argue it may have extended his life, but his quality of life was lessened by the pain in his legs caused by the circulatory problems which were related to the diabetes which undoubtably was worsened by the pred.

Den
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-18-02 22:11

Den,
Don't forget that prednisone can cause diabetes. It can also cause your doctor to panic into thinking that you have diabetes and prescribe insulin (which immediately makes you insulin-dependent for life).

I have studied many terminally ill diabetic patients, some of them were just kids. That has made it very easy for me to drop the doctors who have insisted I 'need' prednisone...

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Caroline (---.win.org)
Date:   07-19-02 06:35

Hi,

Yes, diabetes--i had forgotten about it. I have a dear friend of 30 years who was taking pred. for severe psoriasis. She became diabetic and her gp. doc advised her that it was from the steroids. this was years ago and i think she is still angry.

trevor, what horror stories are to be found with MTX? i hope my appt. this monday with your 'paper' in hand might change my treatment.

caroline
 
 Re: Has Prednisone Helped anyone?
Author: Belinda (---.dsl.rcsntx.swbell.net)
Date:   07-19-02 07:33

Caroline,

I know this is supposed to be a discussion of whether prednisone has helped anyone, but in answer to your question about methotrexate....

Go to this site http://www.rxlist.com/cgi/generic/mtx_wcp.htm to read the warnings on methotrexate. It looks like the most serious toxic effect is that it can be fatal. Beyond that, read the description of possible symptoms of side effects. Some of those symptoms, such as dry, non-productive cough, are the same as the symptoms of sarcoidosis. I would have to inquire of anyone recommending this treatment for sarcoidosis exactly how they intended to monitor for toxic effects from the drug therapy, since some of them correspond to the original symptoms for sarcoidosis.

Belinda
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-19-02 07:52

Caroline,
Methotrexate was one of the early cancer drugs. It was developed to kill new cells as they develop in the body. Its target was cancer cells, but it will kill any new growth. It is used in the termination of Ectopic pregnancy, for example.

It is an indiscriminant drug, and will also kill the new cells that the body produces as part of its healing process.

I am more concerned by the reports of it causing polyps or nodules to form on the vocal chords, and elsewhere. There are some messages here from patients who have had this problem. This is a facet of MTX's actions which is not intended, and has not been well understood by science.

This drug has been validated as a "prednisone sparing" agent. I believe that. like prednisone, it is the wrong drug for the task of sarcoidosis management. The MTX studies are not conclusive and not convincing and rarely have been continued long enough for side effects to be noticed by the researchers.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Maryland (---.usno.navy.mil)
Date:   07-19-02 10:21

Dorothy

I'm not sure how I shoud answer your question although I've been on Prednisone for 20 years. My initial bout with sarcoid resulted in phase I pulmonary involvement that did not require drug treatment. But within 1 yr my liver was aggressively attacked and I began a regimen of prednisone and a host of other drugs over the years. I am currently on 10mg/day. My diagnosis included chronic intrahepatic cholestasis, shclerosing cholangitis and bile duct destruction. My prognosis was guarded and I was projected to have liver failure in 10-15 years. That was 18 years ago and my liver sarc has been stable for the last 12. Although I continually battle other problems (skin, joints, eyes, neuro), I have to say that I have significantly improved since that point in time.

Having said all that, I must say that the side effects have taken a toll on my body. I've had a number of failed weaning attempts. My adrenals have been dormant for so long I don't think they will ever be able to function on their own. From my first dose of prednisone, I've had difficulty sleeping. I'm weary of taking drugs but I've resorted to sleep aids periodically just to get 3/4 hours of sleep at times. It has raised my blood pressure, added weight, caused digestive problems, and if I knew then what I know about it now, I probably would take my chances with something else.

Trevor (Admin) has helped me understand a lot about sarc and we all should be grateful to him. His contributions provide valuable insight and science to what is sometimes a great mystery to many of us. I think his most important contribution is providing the foundation for asking our physicians detailed and intelligent questions about their approach to treating us. I was recently advised to take a calcium w/vitamin D supplement. If not for the contributions of Trevor and many others, I would have not known the dangers of taking the supplement.

Although I feel that I've benefitted from taking prednisone, I also feel that there probably was an alternative that would not have taken control of my body. Doctors, like all of us, tend to do what they're comfortable with. You can always take the prednisone. If you have a less destructive alternative and time is on your side, I would say see if it works for you.

Maryland
 
 Re: Has Prednisone Helped anyone?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-19-02 10:23

Has Prednison Helped?

In answer to this question.....I was on Prednisone daily up to 40 mg. daily..once for 8 months and another time on Prednisone 30 mg. for 5 months duration.
I gained 45 lbs. first time and 50 the second round. I had many side effects while on the drug.
It helped when I first went on the drug...but I think being on Prednisone for long periods of time (over 6 weeks) can cause more problems than it can help.
Caroline Mcg.
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-19-02 15:22

Caroline,
Taking the calcium would make no difference to your bone density. Take a look at "Increased calcium intake does not suppress circulating 1,25-dihydroxyvitamin D in normocalcemic patients with sarcoidosis". Calcium supplementation does not work the same in sarc patients as it does in normals.

Further, the abnormal 1,25 Dihydroxyvitamin D3 metabolism itself is probably at the heart of bone loss in sarc, and prednisone makes things worse primarily by blocking the actions of NuclearFactor-kappaB, which is essential for proper bone biology.

I am sure you don't want me to offer advice about the MTX...

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Betty Campbell (---.36.221.203.acc15-dryb-mel.comindico.com.)
Date:   07-20-02 23:55

Dorothy,
Three and half years ago I was diagnosed with non-specific skin sarc. I had been very fatigued and breathless for 6 months, and my Gp told me to take a nap every arvo. I suddenly boke out in an itchy rash at base of hairline and prescribed a lotion (not Pred). OUt came the rash in nearly all parts of my body..except lower legs and lower arms and across chest. The itch was absolutely unbearable. Skin specialist took 3 biopsies from different parts of body--the old and the new rash and path. result came back Sarcoidosis. My lungs are clear, and I was on 50mg Pred for 1 wk, with very gradual decreases. I would have one good day, one bad day when I could hardly get off the bed, or go out. BUT, I guess I needed the Prednisolone (I am in Australia), as what else would cope with that horrific itching, in so many parts. I am still on very low dose of Pred..i.e.1 and 1/2mg alt. days. Had 2 attempts when it got down to 6mg and up I had to go because of peculiar symptoms. Third attemtp down to 6mg I have battled it out and gone through awful leg pains in tendons, muscles and soft tissue. I would not recommend Prednisone if your lesions do not itch. My skin spec. says for me to stay down on the v. low dose for next 2 yrs, but I sure am NOT going to do that, I'll battle it out, hopefully. I still have 3 small sore lumps in my head and use Elecon (Prednisolone lotion) on them. I have yet to get the 1.25 dihydroxyvitamin D3 blood test etc. as so far my local doc is not being co-operative, so I shall work on him gradually. Getting air thru my nasal passages is a worry, and my left ankle has peculiar pain, and I read this can be an often not diagnosed sign of Sarc. So far, I have yet to read of anyone with skin Sarc which was abnormally itchy. I now know that the sun does peculiar things to my skin and eyes. If you can get away without it, keep off Prednisone.
Cheers, Betty
 
 Re: Has Prednisone Helped anyone?
Author: mona (---.lai-ca-3-26.rasserver.net)
Date:   07-21-02 11:54

Betty,
What kind of pain do you have in your ankle? I have been having ankle pain and swelling in my left ankle. The more I use it the worse it gets. It feels like a wire is wrapped around the inside of my ankle. I'm curious what kind of pain you have and what you have read about it. Thanks. Mona
 
 Re: Has Prednisone Helped anyone?
Author: Caroline McGuirl (---.proxy.aol.com)
Date:   07-21-02 12:51

Hi Betty and Dorothy:
Ankle pain....I now have it in both ankles and one swells more than the other by the end of the day. I wear the ACE anklets during the day...to relieve the tension. It is Sarcoidosis. There is systemic Sarcoidosis and that can affect every or some of the organs, parts of the body.
I was prescribed for Hydrokyzine HCL 25 mg. tab. at bedtime(makes you very drowsy) for the itch (whole body)
I started with scalp itch many years ago and attributed it to "coloring my hair"...I now use a product without amonia or bleach. The rash and itch then went to the body.
I take many drugs and carry a card with me so that they are listed in case of an emergency.
They often ask you (doctors, P.T. visits) to describe the pain. I can say and count off many on the list. Different pain occurs in the different parts of the body...for me anyways.
I have been a nurse for many years and did not know about this disease until I was diagnosed in Jan 2000. The P.T. (I have had 3 series so far all with different therapists) and they have not heard of this disease.
One of the reasons we have to combat....the disease is not known by many.
Caroline McG
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-21-02 13:24

Caroline (McG),
Hydroxyzine is a anti-anxiolytic and sedative. That means it is supposed to make you worry less and sleep better.

Sarcodosis is a rare (10-50 cases per 100,000 of population) but well-known disease. It was first discovered in 1877. John Scadding, the father of modern pulmonary medicine, described many cases in the late 1940's and 50's. Sarcoidosis was frequently discussed in early volumes of "The Lancet" (the doctors' newspaper) and is part of the training of every GP. It is in the books they use when they look up strange disorders.

Scadding actually described all the neuro symptoms you are all feeling, those associated with Hypervitaminosis D, in 1950.

The reason modern medicine has failed to come to grips with this disorder is that it has failed to learn from history. When Prednisone came along in the early 1950's it was hailed as a 'cure' (yes, doctors are taught and faithfully believe that most sarc patients will be 'cured' or put into remission by prednisone, and only a few will 'die'). The lessons of history were forgotten and replaced by a tragic myth.

Consequently all the neuro symptoms you complain of are ignored by doctors. Your Xrays have been cleared up by the prednisone so you must be 'cured'. They now treat you as 'normal' and don't even wonder why the 'normal' drugs don't work properly for you. What a terrible mistake...

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Betty Campbell (---.13.220.203.acc09-dryb-mel.comindico.com)
Date:   07-22-02 17:01

Caroline McGuirl & Mona,
Only my left ankle often painful, mostly at night in bed and a hard sort of dull pain wakes me up and keeps me awake until I get up and walk. In daytime I put small Nature's Rememdy patches on swelling under anklebone. These come in small round and oblong larger stick on patches (from Ti Tree Plantations, Queensland, Australia). The fifteen months of pain in leg muscles, tendons and soft tissue was only when walking (can't climb stairs), not at rest. I think it was steroid induced myopathy because after 1 wk of 6mg Pred (for 3rd try) I thought lightening had hit my whole body, then it was left only in legs. Some days I shuffled. Mona, my chemist photstatteed the Chapter on Sarcoidosis from his Merck Manual and the parts pertaining to me were "acute periarticular ankle inflamation" and also "nasal and conjunctival mucosal granulomas may occur".
Merck Manual of diagnosis & Therapy is on the Internet. try www.merck.com and go to links. Caroline, may I ask you what the ACE anklets are? Your skin rashes sound similar to mine. I also get odd pains different parts of body. I am now down to low dose of 1 1/2 mg Pred alt. days and take vioxx most days. I am wondering if the lumps in my head, not noticeable but sore to touch, are granulomas on lymph nodes. My relief for itching to keep my sanity was to soak in Pinestarsal bath, often in middle of night. My first attempt down to 6mg Pred caused ghastly sensations in my head when any one asked me questions or I got stressed. The 2nd atttempt down to 6mg brought out much itching.
Thanks for sharing, Betty
 
 Re: Has Prednisone Helped anyone?
Author: michael (---.gibnynex.gi)
Date:   07-28-02 16:41

I have been on prednisolone for 3 years now, since taking the medecine i feel at least 75% better. I was diagnosed pulmonary and kidney sacoidosis
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   07-28-02 22:25

Michael,
It is great that Prednsione has made you feel better. You didn't say what dose you are on, but I am assuming it is more than 5mg.

Prednisone works by shutting down a molecule called NuclearFactor-kappaB that helps our body react to infection. Unfortunately, NF-kappaB is also involved in bone metabolism, and shutting it down stops our bodies from making new bone. So you need to get your bone mass checked regularly, this is not an occasional problem, it happens to every patient who is taking more than 5 mg of prednisone daily.

NuclearFactor-kappaB also regulates hyperglycemia. It is triggered by Hyperglycemia and adjusts the body's response to the insulin coming from its pancreas to regulate the hyperglycemia. So you need to keep an eye out for problems in this area too.

Nuclear Factor-kappaB was one focus of my presentation last week at the Sarcodiosis Network Foundation. We will be hearing a lot more about it as scientists discover more of its actions.

Thanks for posting from Gibraltar, I look forward to many more posts from you.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Kirk Edwards (---.sd.sd.cox.net)
Date:   08-07-02 22:07

I'm not on pred, but was many years ago. I did feel much better. I feel so terrible most of the time that I really don't care what pred can possibly do long term. It would be wonderful to feel like being alive again for a while. My VA doctors have mentioned it, but haven't put me on it yet. Next time I go I'm going to check on it.
Kirk
 
 Re: Has Prednisone Helped anyone?
Author: Lynn (---.lsanca1.elnk.dsl.genuity)
Date:   08-07-02 23:46

I am going to relate things I have heard from other sarc patients....these are not FACT so take them as information and not a rule:

1) Sarcoidosis can go into remission withing 2-3 years of onset without the need of medication. A wait and see is the approach many doctors are taking now unless you have it in the heart or brain.

2) Alot of people went on prednisone as soon as they found out they had sarc. They got better...but did they get better because sarc can sometimes go away on it's own in 2-3 years or because of the meds?

3) If you are in pain...then by all means..consider some medical help via medication. Don't be a martar.

4) Many patients on prednisone (or any steroid) get on and can't ever get back off. It destroys your bodies own cortisone production as it shuts your production fo steroids down and replaces it with it's own. As you shut down..you can no longer make your own and become dependent on prednisone. Each time they go down in dosage, they get sick again because their own body can not take over like it should.

5) Prednisone (steroids) have their own set of problems...diabetes, moon face, weight gain (large amounts), high blood pressure etc. Many of these do not get better once you are off the steroids. I know one sarc patient who is taking over 14 medications a day including prednisone. The other meds are for what the prednisone did to her. She can't get off the prednisone.

6) A lot of people swear by prednisone....maybe a short course to see how you react would be worth your while.

When it comes to making a decision to start steroids...you have to do research and weigh it out. There are other meds that sarc patients have been successful with that you could try as well.

A new theory of bacterial infection is showing up in places on the web for sarcoidosis. Some doctors believe that "auto immune" diseases are all linked to mycoplasma infections that you can't culture. The theory works like this:

Mycoplasma bacteria are able to live and hide inside the organs. Since auto immune means your body is attacking itself (your own organs)...we belive it is a mystery why that could happen because they can't find anything to cause those attacks. Your body isn't stupid...it was created to fight infection not itself. If in fact auto immune is your body fighting something inside the tissue/organ then it would make some sense that it could be a mycoplasma that is hidden in that organ/tissue that is not culturable. If a doctor can not culture a bacteria...in their mind...it does not exist. I know I am not explaining this well.

Good luck and prayers to you....
Lynn
 
 Re: Has Prednisone Helped anyone?
Author: bill (---.ri.ri.cox.net)
Date:   08-16-02 16:34

i'm curious as to what dosage is safe for prednisone. I have been on it for three weeks now. I statred at 40 mg and am now at 30 mg. I keep hearing how as low as 7.5 mg can screw you up. How long would it take to start seeing serious side effects. Also, it is my understanding that prednisone shuts down your immune system. Is this correct??? Why would my doctor say that I shouldn't still be getting fevers if I am on a med that shuts the immune system down??
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-16-02 16:43

Bill asks : "why would my doctor say that i shouldnt still be getting fevers if I am on a med that shuts the immune system down??"

Answer: because he doesnt know what he is doing. Maybe he hasn't been reading the studies implicating bacterial infection as a cause of sarcoidosis.

Bill, try to read as many of the 1200 messages that are on this board as you can. What you learn here may save your life, and will certainly save your sanity.

..Trevor..

ps: The FDA prescribing instructions say:
Corticosteroids may mask some signs of infection, and new infections may appear during their use. Infections with any pathogen including viral, bacterial, fungal, protozoan or helminthic infections, in any location of the body, may be associated with the use of corticosteroids alone or in combination with other immunosuppressive agents that affect cellular immunity, humoral immunity, or neutrophil function.

1 These infections may be mild, but can be severe and at times fatal. With increasing doses of corticosteroids, the rate of occurrence of infectious complications increases.

2 There may be decreased resistance and inability to localize infection when corticosteroids are used.

Prolonged use of corticosteroids may produce posterior subcapsular cataracts, glaucoma with possible damage to the optic nerves, and may enhance the establishment of secondary ocular infections due to fungi or viruses.
 
 Re: Has Prednisone Helped anyone?
Author: bill (---.ri.ri.cox.net)
Date:   08-16-02 19:22

LOL,ok too many big words Trevor. So is 40 mg a lot of prednisone????sorry
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-16-02 19:52

Bill,
Too many big words? Ok, let me try again.

"Prednisone is unsafe at any dose" (apologies to Ralph Nader).

It is proven to produce osteoporosis at 7.5mg, but even at 2.5mg every other day it significantly reduces the regeneration of bone and your ability to resist diabetes.

Look, if 2.5mg wasn't still too much, then why can't some sarcs wean themselves back to zero? Any dose can be addictive, and this drug is a killer. A short-duration band-aid that is misused by a misguided medical profession. Remember- there are no reputable studies proving that, long-term, it does anything other than harm to your body. It makes the X-rays look good for a while (maybe for as much as 20 years) and then you head straight downhill.

("Reputable" means a study which was not funded by the drug companies.)

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Bill Murray (---.ri.ri.cox.net)
Date:   08-19-02 18:18

Trevor,I have noticed that lately i have been coughing all the time. Not like when you get a cold,more like i am choking and it makes me cough. could this be from the prednisone??also i have benn getting these new pains. They are sort of likepins and needles.they are not in any particular part of mee. They are more like all over in differrent spots all the time. Could this be from the prednisone. I am also getting a large lump in my neck. only on one side though.sort of like an enblarged lymph node??any ideas??
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-19-02 18:32

Bill, Although prednisone suppresses the serum ACE valaue, and usually clears up the Xrays a bit, it really does little or nothing to fix the underlying problems. In particular, it does not bring down the high levels of 1,25-dihydroxyvitamin-D that are generated in the granuloma.

The pins and needles pains you are getting are called "Paresthesia". They are a sure sign that your 1,25-dihydroxyvitamin-D levels are too high. Get them measured (click here).

A high level of this hormone will also affect your ALT and Alkaline Phosphatase. Enough of it can damage your liver and your kidneys. Get your D levels checked.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Bill Murray (---.ri.ri.cox.net)
Date:   08-26-02 22:18

thanks trevor. I had my d levels checked today. how long does it usually take for the results??the answer the doctor gave me for the pinching feelings was that it was probably withdrawals from going to 40mg to 30 mg of the prednisone. could this really happen?? also just as a side note, you were mentioning something about the alt levels. My alt levels were consistently up around 125 all last summer and fall. i had a liver biopsy in january and thay have been fine since then. any clues???Bill
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-27-02 08:42

Bill,
ALT high levels indicate liver dysfunction. That's why they gave you the biopsy, I guess. Not sure why the levels would drop as a result of the biopsy.

At 30mg of prednisone the drug is totally controlling you body. Your own adrenal gland cuts out somehwere between 5mg and 15 mg daily. So it's hard to predict what might be happening as the dosage chages. Anyway, when you get your D levels back, lets's talk about the whole picture. I assume there will be new ALT levels as well?

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: bill (---.ri.ri.cox.net)
Date:   08-27-02 15:35

Trevor, im not sure if he is running alt levels also. He wasnt too happy running the tests he did.lol. He didnt like anyone second guessing him. Oh well.
 
 Re: Has Prednisone Helped anyone?
Author: Debbie (---.dialip.mich.net)
Date:   08-27-02 16:01

Trevor,
Beginning tomorrow I'm on 30 mg. of pred a day for five days. I really had a bad time weaning off of it due to joint pain. Of course, I was on it for 8 months then. Is it possible to have those same effects in such a short time period?

By the way, it's not sarc this time. It's poison ivy. I'm itching ALL OVER!

Debbie
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-27-02 16:16

Debbie,
It is generally accepted that a course of Prednisone at that sort of dose for just a week or so does not cause any real problems. The problems come from people who cannot quit, or if the prednisone exacerbates an infection.

Having said that, I am not altogether convinced that "they" know what "they" are talking about. Nevertheless, it is not worth worrying too much about this - focus on the getting rid of the poison ivy and then focus on knocking down the sarc.

..Trevor..
ps: Did you remember to ask Doc give you a little Minocin for the poison ivy We gotta sieze every chance we can get with some of the Docs Here is a relevant article to show him/her

 
 Re: Has Prednisone Helped anyone?
Author: Debbie (---.dialip.mich.net)
Date:   08-27-02 16:55

Trevor,
I can't believe how fast you respond. I am taking tetracycline twice a day (250 mg doses, I believe). Is that the same as Minocin? Also, I just read that poison ivy can come from your immune system over reacting to something harmless. Do you think it's possible that if I didn't have the sarc, my immune system may not responded as it did, and I might not have gotten the poison ivy? I'm just curious. I'm just a poor, ole itchy school teacher looking for some answers. Itchy today--witchy tomorrow. Watch out kids! Here I come. Just kidding! Anyway thanks for your help. The thought of 30 mg. turns my stomach, but the more I itch the more I can see myself popping them all tomorrow!

Take care! It's good to be alive. I just think of last year at this time and I'm doing so much better--poison ivy and all!


Debbie
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-27-02 17:12

Debbie,
I only react fast when I am sitting in front of my computers. These days that is thankfully getting less and less frequent. Went down to The "House of Blues" on Sunset Strip yesterday for a concert by "Something Corporate" with my daughter. It was nice

Anyway... lets see... yes... the Sarc genes certainly seem to pre-dispose to allergies and other immune sensitivities. Tetracyclines are an older drug, and some of the microbial strains have developed a resistance to them. Minocycline (Lederle calls it Minocin) is more recent and generally there are fewer resistant bacteria to it. It also seems to penetrate the proteins that the bacteria use as defense against antibiotics better than the older tetracyclines. Doxycycline is another new drug, and you can see how the three patients that didn't get fixed by the Minocycline in this study later improved on Doxycycline.

Attacking bacteria is an art. The tetracyclines are a good start, but even if they don't work then Minocin or Doxycycline may. When one of them is effective it starts giving results in about 1-2 weeks... (at least, that is my experience).

The low-dose Minocin therapy of Dr Mercola is designed to reduce discomfort and side effects from taking the antibiotic, which it does very well IMO.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Debbie (---.dialip.mich.net)
Date:   08-27-02 17:46

Trevor,
The doctor (dermatologist) I went to today does not believe that any of my problems have been sarc related (rosacea, ezema, flaking of the scalp, and now poison ivy). It is strange because I was diagnosed a year ago and never had any of these conditions. I may have had a little rosacea, but I really just thought it was a bad case of blushing. I'm supposed to decrease the tetracycline to one capsule daily. I've been on it for about a month. I'm glad you enjoyed the concert with your daughter. I think it's wonderful for a father and daughter to have such a nice relationship. There are many who don't. Thanks again. I better get away from this little machine and get some school work done!

Debbie
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-27-02 17:50

Debbie,
Let me explain the 'allergies' another way.
Yes, Sarc patients genetic makeup does seem to make them more sensitive to cuts and scratches and stuff.

But the inflammation of Sarcoidosis is a hyper-inflammatory response, IMO, rather than a hyper-sensitivity. When I cut myself I come out in a big welt (unless I apply antiseptic real quickly). My wife does not have this problem. Her immune system must also react to bacteria in the cut, but the lack of tendency towards the run-away inflammation of sarc prevents her skin from coming up into a welt.

Internally, when our soft tissue is attacked by "microbes" the same thing occurs. In Sarc patients things seem to get so bad because the bugs can actually live in the granuloma that are formed as a result of their abnormal 1,25-dihydroxyvitamin-d production.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Debbie (---.64-31-6.bignet.net)
Date:   08-28-02 17:44

Trevor,
Thanks for your clear explanation. Must admit--I had more energy today (and still do) than I have had in a long time. I hope I can get rid of it before it's time to go to bed. I do need to get a little sleep. I can go on four or five hours, but nothing less. The way I feel right now--I'm like the Energizer Bunny and it's going on 9:00 PM. I'll probably fall asleep about when it's time to get up.

On the bright side--I finished all my lesson plans today and the ones I didn't finish all week. I just hope the kids finished them with me!

Have a great evening. Something tells me mine will be long. Perhaps I'll take advantage of these five days. I must admit, I only took 15 mg instead of the 30 mg. I can't imagine how I would be right now if I took the whole 30. If I don't notice any improvement by tomorrow with the blisters and itch, I'll listen to the ole' doc (maybe). It depends on what tonight brings forth!

After tomorrow I have a four day weekend. I'll deal with my problems when I don't have to deal with work!

Thanks for being there for us!

Debbie
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-29-02 04:22

Debbie,
It is great you are feeling better. Let's hope it is the Antibiotics starting to "do the job" rather than the Prednisone

I am a little puzzled why your physician did not prescribe a topical cream, such as Betamethasone. But I guess you have already tried that...

A four day weekend? Oh yeah - I had forgotten

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Debbie (---.dialip.mich.net)
Date:   08-29-02 17:43

Trevor,
You never cease to amaze me with your knowledge. In additon to the 30 mg (I'm only doing 15 of prednisone I am on Atarax, using a wet compress of boric acid and water on the areas for 15 minutes twice daily, and of course applying Betamethasone Dipropionate Cream. I guess I did myself in good. There's NO way I could have handled the 30 mg of pred even for 5 days. I thing the 15 mg is doing OK. I just hope I'm not sorry later. It seems a little better today. I really want to search my yard for the ivy though. That's from where it had to come. I live in a residental area with no fields or woods, but I guess doesn't mean a thing. Perhaps I'll take advantage of being energized and get caught up on some school work. Take care!

Debbie
 
 Re: Has Prednisone Helped anyone?
Author: Darren Rewi (---.ia3.marketscore.com)
Date:   08-31-02 04:37

Hi folks,
Just found the site. Been reading the discussion on Prednisone and
I,m not sure what to think.
Initially diagnosed with Sarcoidosis 7 years ago and then told that it had
gone,but has come back with a vengance the last 3 years.After being on
40mg for 6 months without result it was reduced to 15mg while undergoing
an 8 week programme of Metholtrexate once a week and since then I have
been on 10 mg.
Well guess what exactly one year later they are putting me through
another Metholtrexate course.
In the last year I have been rushed to Hospital twice with Kidney Stones
and have now got quite enlarged lympnode involvement in the neck area
so as complicated and involved as sarcoidosis gets I just seem to be
treading water.
Regards Darren R,
new contributor.
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   08-31-02 04:47

Darren,
Welcome to SarcInfo!
Go get your 1,25-Dihydroxyvitamin-D levels checked IMMEDIATELY if you are getting kidney stones. I assume they have biopsied Calcium Oxalate in them? Maybe they didn't bother...

It is a simple set of blood tests, details are at this link (click here)

Thats all you need. After the results come back then you can work on fixing the problem instead of treading water and getting messed up by MTX and prednisone

In the meantime try and spend as much time as you can reading all the 1500 messages on this system. Many are a treasure trove of information - and I guarantee you will find at least one that changes your life...

Keep Smiling
Trevor
 
 Re: Has Prednisone Helped anyone?
Author: Barbara (---.proxy.aol.com)
Date:   09-06-02 15:04

Hello:

I have been diagnosed with hyper sensitivity pneumonitis. Have a lot of symptoms of sarc, I have been on prednisone since July 8th, oxygen since June 10th, and yes I have noticed a difference in my breathing I have a lot of side effects from the prednisone, but they hope to start tapering down from 40 in a couple of weeks. Good Luck
 
 Re: Has Prednisone Helped anyone?
Author: beth (208.168.92.---)
Date:   09-10-02 17:34

Hi my name is beth
I was diagnosed with sarcoidosis in June. I have it in my lungs. I was on 60mg of prednisone for 2 weeks then i was reduced to 40mg because of side effects. i am now on 30mg, and i am going to repeat my pft's and chest xray at the end of the month. i have gained 20 lbs since being on the prednisone. The doctor told me that i would be looking at 10 months for being on the prednisone. i was told that my disease was in stage 2. how long does it usually take to get off the prednisone? Did anyone else take 60 mg?
 
 Re: Has Prednisone Helped anyone?
Author: caroline (---.win.org)
Date:   09-10-02 21:17

Hi there Beth,
Personally I had a very difficult time weaning off of prednisone. Had I known the effects of this drug, I would never have taken it. Any reduction in dose caused a flare of symptoms worse than the ones before. Over the years I have gained 65 pounds but that is the very least of what I have from pred. I also have joint pain in all of my major joints, a cataract and bone scan confirmed osteoporosis. Sometimes the pain will wake me from a sound sleep. Last year it was osteopenia and for a year I have taken Actonel weekly.

I know you asked how long the weaning process was for those that have taken the drug. It's a nasty drug and your doctor will not have to endure it's side-effects. There is a good search you can perform....just left of center at the top of the page, type prednisone. There is a wealth of information here.
Best of luck to you, Caroline
 
 Re: Has Prednisone Helped anyone?
Author: Darlene (205.252.70.---)
Date:   09-16-02 10:04

In 1990 I was diagnosed with Sarcoid of the bone marrow. I lived in Washington State where it was cloudy and damp. I moved back to the east coast and my doctor worked with me and weaned me off prednisone in 5 years! I only had 6 months to live, if the prednisone didn't work, so the 5 years seems pretty spectacular. He did worry about hip replacement problems but so far the only thing bothering me are slight pains in the legs and severe allergies. Also, I had my knee cartilage rip apart but the doctor said it was Ostearthritis. It was painful but I stopped eating meat and began exercising, juicing and physical therapy and now it is much better. I am told the prednisone will do this.

I just got onto this 'sun' connection by visiting Dr. Mercola last week. I plan to call my HMO to get the 'Vit D' tests. I am following Dr. Mercola's Food Plan -- yes you will be an outcast if you follow it but you will feel better!! The whole time I was taking the prednisone, the pharmacists would tell me to get off asap. I refused to take it for a long time but bone marrow sarc had me dying and people were asking me if I was dying so I knew what was going on with me. While I was on disability I went back to school and finished my degree so now I work in a school where you have holidays and summers off. I can collapse and get the rest I need. Life is not easy with sarc and I know some people who are really suffering. I have occasional things like my foot doesn't work and tiredness and waking up at 3am, but I manage. Right now I can't breathe through my nose and Trevor emailed me to say I should get the 'Vit D' test. I was sunbathing like crazy and didn't realize the red eyes and stuffy nose was part of the Vit D overexposure.

Hope this helps and get better. I am at least functional. There is a catalog my co-worker is bringing me to order sleeves and hats for sun conver up. Does anyone know about it?
 
 Re: Has Prednisone Helped anyone?
Author: sara (---.51.219.151.dslextreme.com)
Date:   09-17-02 10:50

i have been on short term doses of prednisone and kenalog shots (my sarc is mainly in my eyes) with no adverse side effects. i was able to wean quickly - started at 80mg and couldn't sleep but no other side effects -actually lost weight and felt good. this drug has literally saved my vision and i would not hesitate to go on it again for a SHORT PERIOD. i think it depends person to person and i was lucky enough to be a good steroid responder and for those considering it- maybe you will be as lucky as i was to find the right treatment for your symptoms.
 
 Re: Has Prednisone Helped anyone?
Author: caroline (---.win.org)
Date:   09-17-02 13:06

Hello Sara,

You are very lucky! My sarc started in my eyes (iritis) and I took oral steroids and then had the kenalog injections. My vision is now only correctable to 20/50 and I developed a cataract. I initially went to a local opthamologist not knowing what I had. I later was treated by a doc at a major university hospital's retina center. After the cataract was removed, the vision in that eye was great with the new lens. Iritis set in again and played havoc with it.

Please take steroid precautions if you again are treated with steroids, like calcium (without D) and keep tabs on your bone density. I didn't know the dangers then, only that I could gain weight and now have osteoporsis. It took a long time after treatment for it to show.

Take Care, Caroline
 
 Re: Has Prednisone Helped anyone?
Author: sara (---.51.219.151.dslextreme.com)
Date:   09-19-02 07:30

thanks caroline- i am worried about future cataracts, (hope its not inevitable) but maintaining my vision at 20/20 now (with various floaters) i have posterior uveitis which doesn't have the best outcome but i've noticed that i only flare when i'm stressed so i do yoga, exercise regularly. etc. i also take grape seed extract every day and vit e. My Dr. (Rao at Doheny Eye) thinks E is a good idea as it scavenges free radicals. the grape seed supposedly good for eyes. I will look into calcium. (i'm 35, run marathons and am otherwise strong as an ox) lately my axilla lymph nodes have been tender. did you notice a progression of sarc symptoms after a few years?
-s
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   09-19-02 08:14

Sara,
Have you had your D metabolites checked yet? Floaters are often due to a high 1,25-D hormone level
..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: sara (---.51.219.151.dslextreme.com)
Date:   09-19-02 10:21

thanks trevor- i have been following the posts on vit. d closely. i think my floaters are leftover vestiges of earlier flares. Oddly enough when I mentioned vit d to Dr. Rao he said that studies have shown that sun can be good for uveitis and in Germany they often prescribe extended bouts of sun for uveitis! perhaps they do not have sarcoid as well. I am planning to get tested next time i see Dr. Om Sharma (great sarc specialist in los angeles for those in need) for my yearly check-up and ask about minocyn as well. since i am so healthy (thank god) they have a wait and see attitude, but i am eager to try the minocyn or tetracycline to see if i can put the disease into remission.
-s
 
 Re: Has Prednisone Helped anyone?
Author: Caroline (---.win.org)
Date:   09-19-02 19:50

Hi Sara, Yes, my symptoms have continued to progress and I have a multitude of them. I started with iritis (posterior also) in the summer of 96 and was not diagnosed with sarc until spring of 2001. But we are all are different and hopefully you will beat the iritis and the rest. Get the D tests and keep reading....knowledge is power! Caroline
 
 Re: Has Prednisone Helped anyone?
Author: Brenda Eng (---.toronto.auracom.net)
Date:   10-01-02 12:42

I was diagnosed in Jul. with sarcoidoisis, I was prescibed 30 mg. prednazone, I had badly inflamed ankles and all other joints were inflamed, the prednazone helped immediately, the inflamation in my ankles went away after a couple of weeks, aswell as my other joint pain, however I have since experienced alot of pain in my left ankle and so I am still on 16 mg. of prednazone and I don';t know how long it will take to get it into remission., nor do the Dr.'s, I am also taking Viox as an anti-inflamatory and i still need this, when I go one day on and one day off my foot is more sore.
Not too many answers out there,. I 've been on sick leave since Aug. 9, and hope to return Mid Nov. I rest alot of the day with my feet elevated. I never had a rash, just red hot ankles and I couldn't walk at all. I have enlarged lymph nodes in my lungs, but no problems breathing. I find swimming very helpful.
Not much of a life.
What about you?
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   10-01-02 12:53

Brenda,
One of the most common effecst of Prednisone is to cause muscle aches, pain and failure. In fact, Achilles Tendon failure is frequently due to this wonder drug, especially in combination with the Flouroquinolone antibiotics, like Cipro, Tequin, Avelox, Quixin/Levaquin/Elequin or Ocuflox/Floxin. It also attacks the joints and hips.

Don't wait around for your Sarc to go into remission, it probably will not, and if you artificially force it to do so by taking steroids then it will rebound as soon as you stop taking them. Take a look through some of the links at the bottom of this page and look around the message board.

Have you looked into other possible causes of your inflamed ankles (besides sarc and pred)? High blood presssure? Arthritis?

You are amongst friends here. Welcome! We have a lot of experiences to share...

..Trevor..
 
 Re: Has Prednisone Helped anyone
Author: bob (---.csfb.com)
Date:   10-02-02 17:55

Be careful with methotrexate. It can cause weird things to happen in your lungs like thickening of the pleural lining. I stopped it a while ago
 
 Re: Has Prednisone Helped anyone?
Author: Kathy (65.121.96.---)
Date:   11-02-02 07:55

Dorothy, I have had sarcoidosis for over 3 years (with a family history). For 2 years, I was on and off prednisone - I gained 70 lbs, and eventually got toxic from the steroid (I was on 60 mg day for months); and all I wanted was to be OFF STEROIDS. I swore I would rather die than ever take them again. Unfortunately, after a year of no treatment, I was literally begging for steroids. My physician will not give me oral steroids; however, about 5 weeks ago, we did a course of high dose steriods by IV - just 5 days. I gained 10 lbs immediately, but have lost that and more, and I am feeling so much better. Steroids are an ugly drug - as hurtful as they are helpful; but for me, they are a lifesaver. My doctor and I discussed Methotrexate - he says it will tear up your insides, and it is not something he would consider, which I agree with. Best of luck to you!!! Kathy
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-02-02 08:06

Kathy,
Now that we understand what causes Sarcoidosis (bacteria), and why patients experience the terrible symptoms (high levels of the secosteroid hormone 1,25-dihydroxyvitamin-D) there are treatments available which are more effective than steroids, and far safer.

In fact, prednisone can only make a bacterial infection worse, as it suppresses the body's immune response and allows the bacteria to proliferate. It is exactly the wrong drug to use.

Take a look at the message threads dealing with bacteria. You will find that Minocycline, a common antibiotic, is an effective treatment for sarcoidosis. You will also learn about how ARBs can help reduce your symptoms as you adjust your lifestyle to ease this disease into remission.

..Trevor..
 
 Re: Has Prednisone Helped anyone?
Author: Kathy (65.121.96.---)
Date:   11-02-02 12:53

Trevor, forgive my confusion, but why have I never heard of this before? Is this an accepted theory - the most informative article I found states that it has not yet been peer approved.

Why would I respond to steroids, as I have during every course given? The difference was truly night and day. Not that I would mind not taking steroids! But I have been treated at National Jewish in Denver in the last six months, and this possibility was never raised - in fact, they declined to treat me at all.

Thanks for your help!! Kathy
 
 Re: Has Prednisone Helped anyone?
Author: Admin (---.vnnyca.adelphia.net)
Date:   11-02-02 15:17

What haven't you heard before, Kathy? Research has been ongoing for at least twenty years trying to identify microbial pathogens for sarcoidosis, and the three key sets of results are the paper from Sweden, which was published in March 2002, the Johns Hopkins Paper from Sept 2002, and the Mycobacterium paper just published (November 2002). None of this is particularly surprising, it is just that the scientists have only recently hit pay dirt.

And, as one who has also spent my life researching this disease, I can immediately understand what these results mean, and have pulled them together here for everybody's convenience. I suspect it will take another decade or so for the realization of bacterial involvement to filter down to the average pulmonologist.

As for the abnormal 1,25-Dihydroxyvitamin-D regulation in Sarcoidosis, that too has been around a long time. I first found abnormal D metabolism reported by Scadding in 1949, and there was a lot of of work by Prof John Adams at UCLA/Cedars Sinai during the late 80's and early 90's. You will also find links in messages on SarcInfo to 1,25-D research at M.U.S.C. and University of California, Riverside.

My unique insight, as one who has experienced the worst of this disease at first hand, is to pull together all the work that has been done in labs and put it into the context in which it is found in a patient. Just take a look at the references given in our 3 papers. I am not really extending the envelope very much. I am showing how it all fits together.

The other unique insight (Wait - "We have two, two unique insights" - Monty Python's Spanish Inquisition -lol) is the