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Prednisone & Chronic Sarc Questions

JacobeanLily
0 Recommendations

I've posted many times about the pros and cons of taking medications for chronic sarc (as opposed to acute sarc, which often remits on its own) and here I go again.

I've had measurable sarc symptoms for 9 years now and my doctors (many and varied) have always suggested prednisone as a palliative medication. On questioning, none of them have ever stated it would cure me and they have all told me there's no proof it would bring about remission..... just a good possibility.

Sarc has slowly spread throughout my body (as seen in CT scans, gallium scans, MRI scans, the extent of my cough, my paralysed vocal cord etc) and yet I'm still able to accomodate these symptoms and live a satisfying life. I restrict the amount of sun I'm exposed to, I go to bed early, I rest alot, I avoid stress as if it were a plague (which it is for us, in a way) and I eat healthy food.

I figure the sarc will spread whether I take pred/methotrexate or not...... so I might as well be as comfortable with myself (ie not fat, not angry, not swollen and distressed) as possible. However, I can see that I'm on a downward spiral and the flares just keep on coming..... along with creeping advance of disease damage, I guess.

I have 2 questions I'd love some feedback on:

1. Has anyone taken prednisone and/or methotrexate for CHRONIC sarc (ie not on initial diagnosis, but after, say, 6+ years of having sarc without other medications) and actually been improved by it? By this, I mean..... not been worse when pred/methotrexate stopped; gone into remission.

If so..... what was your treatment dose/length of time on meds etc?

2. Given the extent of the negative side-effects (weight gain, moon face, buffalo hump, bone loss, mood swings, generalised swelling etc etc etc), I wonder why people take it at all? As it won't cure, are you hoping for remission? Anecdotally, it appears many many people are still experiencing 'flares' on the prednisone...... so clearly it isn't working to provide remission BUT they go on taking it.....

Any feedback very welcome while I wrestle with this problem of whether or not to take a recommended 'treatment' of low-dose prednisone + methotrexate. I am genuinely struggling with the paradox of medicating with little hope of improvement.....

It's confusing, isn't it?

Explore topics in this discussion:

Cancer Plaquenil Sjogren's syndrome Menopause Prednisone Osteoarthritis Sarcoidosis Osteoporosis Folic acid Stress Plague Asthma Ibuprofen Diabetes Celebrex Bursitis Constipation Pain Insomnia Depression Paralysis Celexa Methotrexate Diarrhea

22 replies

Boxerlover

I was sick many years before diagnosis and diagnosed in 03. I did not do any meds until about a year ago. I had tried methotrexate two other times for a short period of time but the nausea was too bad so I immediately was taken off. My doc wanted me to try it again with nausea meds and I agreed to give it one more try. Within months, the large lymph node in my chest had shrunk. The bad part is that I had more scar tissue. We thought it was helping so I am still on it.

At my last pulmo appointment I found out that my O2 is low and I was 1% away from qualifying for oxygen so I am now scheduled to have all the tests run again to see what's going on. So now I really don't know if it helped a whole lot or not. I haven't noticed any improvement on my breathing which I thought was odd with the shrinking if that lymph node. Plus I did not get too much improvement in pain in my joints. So I don't know what the next steps are until I have the tests. I know my doc talked about 2 new meds that have been shown to work in conjunction with methotrexate so he may have me try that next.

I could never handle steroids, too many side effects so unless my life is in jeapordy, I can't take them.

You are correct in that these meds do not increase the chance of remission so not taking anything is a very valid method. Most of my meds except the metho and folic acid are for symptoms. They wanted me to try Thalidamide as it has shown some promise in cancer patients but my insurance wouldn't approve it and the process of taking it with all the regulations is crazy. By the time I'd do the paperwork each month and get the blood tests and call everything in and get approval for the next month, it would be all I'd do. So I was glad not to have to go through all that. I personally cannot take and DMARDS because of my cancer so for me it's really either methotrexate or nothing. So we will see.

JacobeanLily

Yes, there never seems to be any clarity with sarc, does there? We never really know where we are! Coping with chronic sarc is like being in a three legged race, hopping around, stumbling, falling, picking ourselves up again and hoping to get to the finishing line somehow despite the difficulties.....

I'll be really interested to hear what your tests show - whether the mtx has improved your health or whether the sarc has just stumbled along, progressing slowly, beside it....

There are so few options for us and those options seem so poor, on examination. It seems to me, with symptoms I can just barely live with (although my paralysed vocal cord was a serious blow), that treating the meds as life saving tools rather than management tools makes more sense. I'd take them without hesitation to save my senses or my organs but..... I just don't feel good about taking them for palliative purposes.

But maybe someone on this site has had a positive long-term experience? If so, please let us know!

Boxerlover

Yes, I know what you mean. I myself am curious to see what the results will show. I'm trying to figure out why the metho seemed to shrink the lymph nodes but I ended up with more scar tissue and my O2 dropped so low. The only reason I have stayed on the metho was because we thought it was making a difference. My pulmonary function should let me know how much has changed.

It is a very confusing and frustrating journey especially as far as treatments go. There is no clear cut answers and like you have asked, are there any real results with meds.

I will let you know my results and what my doc is thinking for the next game plan as obviously this one has some issues!

IreneMarie

I'm on Pred 20 with MTX 15 added 5mos ago. Understanding that MTX takes around 5-6 mos to reach a therapeutic effect I have to admit that I now feel 100% better than this time last year. Rarely is there any pain even from years of chronic bursitis.

To be very honest most most of the numerous other symptoms persist, but at least they don't interfere with mobility. Sleeping has improved. SOB has not increased. Uveitis has been subdued. Brain fog somewhat improved. Lost some wt. and moonface. Less tightness (stricture) in throat. B/p, cholesterol and blood sugar are normalized and Vit D/Calcium metabolism are in normal range without suppliments.

I welcome this short term improvement since chronic uveitis and vision loss dictate long term anti inflammatory treatment in my case. Hope the improvements lasts. The muscle weakness/burning (with exertion), fatigue, hoarseness and chronic facial 'stuffiness', hair loss and slow swallow are unchanged. I can deal with these since they are not painful or immobilizing.

TCALL

i was dx 10years ago.. i was on 100mg and its all over my lungs my back my legs and the lining of my brian..and the corner of my right eye.. you really dont want to reach a stage where u have no recovery.. yea its a bad drug but a good drug..consider taken it to atleast put a stop to spreading..

BUNKIE

Hi
My understanding is that the steroids help control the inflamation only. I started taking it in 2003 after my lung biopsy. I took a high dose for 8 months and came off. My symptoms seemed to go away for almost 2 years. Then a big flare of Asthma sent me back to a steroid dependency that has never stopped. My tests are normal. The Sarcoid is resting. I have been on various doses of steroids for the last 3 years and my PFT has improved 20%. The problem is that my body is now addicted to the steroid and anytime I try to come off of it I go through hell. They never can tell if my flare is the Sarcoid or the Asthma and Osteoarthritis. I am going to try again to come down or off and see what happens. Only then will we see what the steroid has done.
Bunkie

DoreenC

I have had sarc since at least 1995 and was initially on and off of pred for 5 yrs so that I could breathe. Without it I am sure I would have died. My lungs show no scarring and my chest lymph nodes went back to their normal size. For about 7 yrs (2000-2007) I had only very mild breathing issues on occasion, which would resolve with an inhaler.

To answer youryour questions I started on prednisone 60 mg per day on Aug 18th for GI sarc, which was making me very sick. My symptoms are 90% improved.
Coincidentally, and symptoms I wouldn't start prednisone for, have changed. A nodule on my forehead disappeared and the one on my foot is almost gone. The facial numbness/tingling that I have had for 2 yrs has ceased ( if I had known this was a symptom of neuro sarc, I would have started the pred for this one) The chronic sinus inflammation is gone and I can breathe out of nose for the first time in yrs. I can sleep now without waking up every night with ear cartilage pain. Putting my ear on a soft pillow would hurt so badly.

But mainly, since I started the treatment for the GI sarc I no longer double over in pain, have hours of nausea, have vomiting episodes, have loss of weight, have feelings of being full fast, have belching constantly and I have had no diarrhea or severe constipation.

It's a tough decision to make. I hate prednisone like the plague. I have the moon face, mood changes (which are controlled by other meds) and worsening of joint pains. But I was so sick that I had to choose the lesser of the 2 evils.


Hope This Helps,
And Good Luck,
Doreen

Frisch

Not sure I can tell you much, but I have had the disease for 5 years, the last 2 years have I been on a steady dose of 30mg pred and 15mg meth, 6 months on, then off the meth for 3 months, I have seen no real signs of increase/decrease, never off the pred, I am lucky, no weight gain for some reason, not sure this really tells you anything, I wil say this, I am always fatigued, does not matter how much or how little sleep I get.

JaynesInPain

Doreen,

How did you know you have sarc in GI? Tests? Biopsy? I am now having bad GI symptoms, almost all you mention-with nothing else to blame. Thanks for sharing.-J

JaynesInPain

Jacobean,

It is such a dilemma! I may not fit the category you requested..chronic sarc for several yrs. However, I am told I do have chronic sarc; in chest nodes & bones. So I am trying to make the same decision as you. I've been on Pred since April '09. Did it help? In some ways Yes, but it was minimal & the sideaffects were too extreme-causing other problems, so I'm almost off it now (2mg). Weaning was pure hell! I'm not exaggerating either. However, my case is even trickier b/c the auto-immune disease that has been brewing over past 5yrs (I've been monitored by rheum. dr w/some markers, but not enough to name it) has now decided to show itself. Recent bloodtests have now come back positive. SO not only am I dealing w/Sarcoid, but another Auto-Imm disease. Funny thing is that treatment for both is about the same; Pred or chemo. I differ from you in the sense that my current symptoms are real bad, I'm barely functioning, so I am more motivated to treat it. I think if I weren't so sick I would just leave it alone. I know many say taking meds to "prevent" it from getting worse is advisable. But there's no guarantee it will really do that. And there is a guarantee that the meds will affect our health/function w/their sideaffects. So maybe more research, more prayers for guidance and too ask ourselves, "if I chose not to take meds & my condition gets worse-will I hate myself, have regrets? Or would I just accept it & move forward?" For me that factors into my decision. It is a rock & a hard place for sure. We just have to try & do what we think is best. I'm still not sure of my decision yet. I hope you don't get worse. Good health to you--J

DoreenC

Jayne:

I had the million dollar work-up. Endoscopy, colonoscopy, HIDA Scan, CT Scan, biopsies ( picked up on chronic inflammation but no granulomas as of yet), and blood tests. After they rule out other common causes through a process of elimination, when you have sarc they then conclude that is the cause of the GI symptoms. There is 20 feet of small intestine that they really can't get to examine. The GI doc that I went to had seen a lot of sarc patients at Mt Sinai and said he saw my presentation on a routine basis and that it was more common than what is reported.
I hope this helps.

Sincerely,
Doreen

priscurl

Hi Jacobean Lily,

I had sarcoid symptoms, i.e. parotitis and facial paralysis for three years before I was actually diagnosed with sarcoid of the lung in 1999. I had been seeing an immunologist at Westmead Hospital for four years. She thought I had primary Sjogren's Syndrome but I was sero negative all that time, however, I did have raised ESR, immunoglobulins, acute phase rexn on EPG, and raised CRP during this period.

I was gatting worse over this four year period and was getting fed up taking ibuprofen and Celebrex without having a diagnosis. I worked out myself I had sarcoid through research (I was an undergrad at uni at the time).

I had to go to see the specialist with a letter from my GP who happened to be her second cousin. In the letter, he broke it to her that I had worked out I had sarcoid; that subsequent tests showed a positive chest x-ray, high ACE, and mediastinoscopy and histology had confirmed it. I also had uveitis for which I was being treated. She was none too happy. She refused me treatment. She told me that every sarcoid patient she had seen went downhill after they had been given prednisone. The ones who didn't have prednisone didn't get any better, but neither did they get much worse (according to her). The Lung man I saw agreed with this non treatment.

After I saw her and she and her eye doctors were so rude to me, I went to Bosch library at Sydney Uni. I found the book edited by Geraint James on granulomatous diseases. This was the only text there which had much about sarcoidosis in it. No wonder the doctors are useless and clueless, other than what is in journals, there is precious little literature on the disease. I photocopied the entire section on sarcoid. I realised from the description, pictures and symptoms, that I had neurosarc for three years prior to diagnosis. I said nothing to my doctors, I wanted to get that diagnosed properly with no hints from me. It eventually happened 5 years after diagnosis in 2004 when I was in a flare and my parotid gland came up. I saw four doctors before the correct diagnosis was made even though I knew it all along.

I got fed up with the immuno in Westmead. I was getting worse. I found a new immuno at the San at Wahroonga. He put me on 5mg of prednisone every other day and 200mg of Plaquenil. I went into remission for the first time in about 6 years. It was bliss, but it only lasted a year and a half. Then I had the flare with the parotitis and paralysis and was diagnosed with neurosarc. They put me on prednisone. I was left on it for months and was taking it every day. I put on weight about 20kgs, I got terrible indigestion in the morning after breakfast which was excrutiatingly painful for about 20 mins. I had insomnia, waking between 3 and 3. 15 am every morning and being unable to go back to sleep. Sometimes I got up at 5 am because it seemed stupid to be in bed and awake. I was manic and had roid rage, having massive arguments. I was not in pain, that was the only thing good about prednisone.

If you ask me, every time I have been on long term pred, the effect of it has lessened, the remission is shorter, the relapse is sooner, and the relapse is worse than the time before. This is exactly why the first immuno didn't want me to go on prednisone. However, my walking was affected and the prednisone helped me function better. Even so, it was better having pred as an injection when the effects lasted for 3 mths . The side effects are less, but you are playing Russian roulette still, as injected steroids can still cause necrosis or infection.

When it comes to drugs, there is no good way.

Antibiotics take an age to work and you are symptomatic on them.

Immunosuppressives increase risk of co-morbidities such as infection, cancer, diabetes, blindness, liver disease, lung disease, kidney damage, liver damage, osteoporosis, bone necrosis.

Anti-inflammatories are not as good as suppressing pain and can cause ulcers, stomach problems, heart problems and clotting problems.

Biologics are still being learnt about and god only knows what they cause long term.

Last time I had prednisone, I was on it for two weeks. I started on 75mg went to 50mg next day and got off it in two weeks. It got rid of the sarc problem but did give me a terrible sinus infection. If you ask me. That is the best way to take it. Hit it with high doses, scare sarc off and get off it. The only side effects I had that was the infection and insomnia- no weight gain, no indigestion, no roid rage. However, I do believe prednisone also sent me into an early menopause.

Pris

lmbh721

IreneMarie...would you please explain what you mean by slow swallow?

THX,
Lynn

coleburrell

i just got diagnose with sarcoidosis and they put me on prednisone. but they also put me on celexa ( a depression med) to help with the mood swings and other side effects of prednisone. i can tell a big difference adding celexa. i am able to handle it better.

IreneMarie

Hi Imbh,

This past year the slow swallow developed. I have to eat slowly with small bites and a sip of water since the food goes down very slowly. Sometimes it feels like it is sitting in the esophogus for a minute or two so I drink more water. Also, my tongue and jaw get tired from chewing so I stop for a few seconds to rest the muscles.

Since going on the Pred again this past spring the moonface and double chin make my airway feel tight and almost partially obstructed (feel like I have an elastic band around my neck). Have to sleep with my neck arched to breathe more easily. I can't be tilted too far back in the dentist's chair because my swollen soft palate obstructs my breathing. Oh, and I get hoarse or lose my voice after talking a few minutes - can't sing anymore (voice 'cracks', coughing) either.

These are minor things compared to the suffering of so many others. Since it doesn't hurt I count myself fortunate - it's just a niusance now and then.

Regards,
I.

Tawney

IreneMarie, for the past year or so, I have had increasing problems with what you call your slow swallow. You describe exactly what I've been describing to doctors. I can't chew meat, munch an apple or a pear or chew anything that involves lots of chewing because the muscles involved just get too tired. I also find my swallow doesn't have enough power to get the food all the way down. I also have huge voice issues...maybe a partially paralysed vocal chord. Just seems to me that all the muscles and the apparatus down the left side of my throat are faulty.

JacobeanLily

Thanks to all of you for responding. This sort of detail about the experience of managing chronic sarc is just so very instructive. I'm grateful to all of you.

We're a bit short on happy-ever-after endings, aren't we?

Again and again I notice that we all manifest disease in different ways. It takes YEARS to even begin to understand this disease, what it looks like, what affects it, how to treat it.... discussions, such as these, give me more hope than the doctors can provide, even though we're all obviously short of answers. Still, as we're all struggling to work it out, I feel the prospects are fair.

Pris, I'm interested in the high-dose Pred idea - how quickly do you get off it? What kind of med reduction per day? Any obvious side-effects? Why the hell don't the doctors endorse such a regime, given the fact that long-term use is so manifestly unsound?

Jayne, I like your question regarding how we would cope with decline as a result of refusing to use meds at all. Its very pertinent. I think about it every day - esp as it relates to my family, my six year old's future well-being, my husband's happiness etc etc. Its terribly complex, isn't it? I think I'll be able to live with such a decision..... but as I'm not literally DYING right now, how can I be sure?

I had hoped to hear some clear positive outcomes from pred/mtx use, but, no, its as I thought - people balancing the negative against the value (variable in every way....) of the positive med affects. A juggling act, requiring our constant attention and judgement.

My best wishes to you all.

Anyone else with chronic sarc and useful med experiences?

Tawney

Hi JacobeanLily

In a round-robin schedule of trying medications just before anyone thought of sarc as a possible diagnosis for me a couple of years ago, I gave prednisone a try at 4 x 5mg/day for a week, then decreasing to nil over a second week. If it reassures you, I had no side effects from that apart from being wide awake (literally!) for the first week and a walking zombie the second through not sleeping. Strangely enough, I did that pred trial between having my first ACE blood test and going back to the immunologist for the results. He ran ACE again and that short period on pred took it from elevated to a lowly 1. Unfortunately for me, I was not in a period of neurological flare when I took the pred and would have been interested to see if it would have helped had I been flaring at the same time.
Re arthritic symptoms, Salazopyrin helped me hugely for a long period. It can modify (not suppress) the immune system and seems to have some anti-inflammatory action. It doesn't have huge side effects like prednisone but takes several weeks to kick in to see if it's going to help.
What does your neurologist "predict", for lack of a better word, as your prognosis? Have you asked whether his experience shows people at your stage of disease might stay constant or most frequently worsen? Do we still have a chance of a spontaneous remission...can chronic sarc burn itself out at some point if it manages to avoid damaging organs? I guess probably no neuro would really hazard a guess at answering those questions but it would be handy for us to have some statistics to look at. It would be nice if we could approach our situations with foresight rather than hindsight.

JaynesInPain

Doreen,

That's interesting. So really they didn't find real conclusive results other than inflamation from biopsy? I am surprised that the doc said that b/c I recently went to Mt Sinai to see Dr Teirstein who point blank said that my GI symptoms weren't from sarcoid b/c it doesn't affect the GI system. To which I responded that I read it "can". He then responded "well it can but it's very unlikely." I have had similar tests/results 2 yrs ago. They suspected I may have issues in beginning of small intestine & tried to explore via "push"endoscopy, but w/not much results. I will most likely need another scope. Even if it is sarc, there's not too much they can do anyways. Thanks for info.

showme261

I have been on prednisone at high doses. 60mg. It took my walking ability from me for several months. After that, I have been on lower doses. Each time i get a little more of a barrier to prednisone. The last time I tried to get myself better I leveled out on twenty mgs. This time I am having to take 15 mgs. (at this time.) In a month, my ace test will be checked and I will see if the 15 mgs prednisine is working. My doctors wanted to start me on 40 mgs.
I am getting allergic to prednisone.
In December, I may need need to start taking methotrexate again. I will probably be taking the shot method, the pills devastate my body. The shot method entails one shot per week. There have been some people saying that it does work. I don't know. The last time I was on it I just decided to stop taking all of my medication. Prednisone and methotrexate.
My ace levels stayed low for about one year. I have asked my doctors not to put me on this medication. I get really sick at my stomach with it. I worry that the doctors will run out of medicine to give me and the sarcoid will just take over. I don't like prednisone but it does help me to breathe and stops the chest pain. I am feeling a little better, but I am still losing weight. I don't think the prednisone is working at 15 mgs. But at least I am still going.

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