Steroids. Should I take them or not?

By Jb522
Posted August 29, 2008 at 9:36 am · 7 replies
In Treatment decisions

I have radiographic stage III sarcoid. Lungs look pretty bad on chest xray. I was diagnosed about 4 yrs ago. 1st year I was on 30mg prednisone with taper to 10mg for most of the year. Subjectively, I didn't feel different and my chest xray didn't change - no better, no worse. I have not been on steroids for past 3 yrs and have felt pretty well aside from fatigue. However, my recent follow up chest xray showed moderate worsening of pulmonary sarcoid.

Should I restart steroids or not is the question? Can anyone with similar experience comment. I worry if I choose not to will the disease continue to very slowly, almost unnoticeable progress forever. I really hesitate to take a drug (prednisone) that is a treatment for many diseases but cures none of them and is associated with severe side effects. And, as many of you know there was a study yrs ago associating discontinuation of steroids with an accelerated deterioration of patients with sarcoid compared to ones that never took the 'roids in the first place.

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By Cheesypops
Posted August 29, 2008 at 9:44 am

Honestly, My choice to step back into the ring with the Prednisone. Was only due to the arm twisting of the Doc.

My family had to deal with me the first time, and I wasnt going to do that again. BUT...this time other than being incessantly chatty...its been a relief. My skin symptoms although are very lightly seen under certain spectrums of light, are almost completely cleared. And the cough is not there.

Swelling that had been in my foot, ankle, hand for what seems forever is also GONE.

I am the exact type of physique that would be considered at risk for HighBP and possible Type2 Diab. so I did take all that into consideration.

But the scarring of the lungs thing was something that scared the hell outta me. I had been a smoker for 20yrs and quit 2yrs ago for same reasons.

Sometimes it isnt all bad. I hope you find your answer and get movement forward to feeling better.

By Pat-y
Posted August 29, 2008 at 10:05 am

Jb,
I would be interested in reading the study on prednisone relating to sarcoid patients. I've only been on pred. for 3 months but want to know all the risks. Do you know where I might search? Thanks, Pat-y

By LawandaM
Posted August 29, 2008 at 7:00 pm

I understand how you feel. I have taken steroids several times my self and I do not like to take them either. There are side effects as you stated. My advice maybe take them for a short time, maybe a week or two. I take them when I have problems with my breathing such as asthma and steady coughing. I also take advair and use an inhaler. What about you? Hope you make the right decision. P. U.S.H- Pray until something happens. He will not lead you wrong!

By micheleb
Posted September 2, 2008 at 2:20 pm

Has your doc not given you the option of trying other medications? Placquenil, imuran, cellcept, methotrexate, humira and remicade are some of the other options you could try. I can not tolerate steroids for more than 4-6 days at a time as it sends me into a complete and utterly dark depression. I tried all the above except cellcept and I am currently getting remicade infusions with much improvement.

By priscurl
Posted September 3, 2008 at 4:15 am

Hi JB522,

I was under an immunologist for 4 years prior to diagnosis with sarcoid for an unnamed inflammatory disease which turned out to be - sarcoid. She told me that all the patients she had treated with steroids deteriorated, but those she observed got better or no worse. So she refused me steroids. As I continued to worsen, I went to see a rheumatologist who refused to believe I had sarcoidosis despite a biopsy and she also refused me steroids. Eventually I saw an immunologist who put me on pulsed low dose prednisone. I was out of pain and mobile for the first time in seven years. However, I didn't stay that way. I ended up with neurosarc and on high dose daily oral steroids for about 6 mths. With the taper, symptoms began to reappear as the dose came under 10 mg. I was Ok for 12mths and then I had an even worse reoccurrence of the same thing. I was back on steroids at a lower dose and for longer. Once again, the symptoms began again as I got down under 10mgs. I came off steroids last September, so have been off them almost exactly a year. I still haven't gone into remission. My ACE has continued to rise and I have kidney, skin and arthritic problems. I can see the immuno's point, that people who take steroids deteriorate. If they are all that can keep you alive, take them. Otherwise, if sarcoid is an infection, and many things about it point in that direction, prednisone will make any infection worse. It is not to be taken lightly.

Pris

By priscurl
Posted September 3, 2008 at 4:20 am

I too would be interested in seeing that study.
If that study is to be believed, then the fact that people deteriorate on prednisone is also a pointer in the direction that sarcoid is an infection rather than autoimmune illness.

By dog
Posted September 6, 2008 at 8:54 am

Chloroquine showed radiographic and PFT improvements for me after 3 mos. Ill be taking the drug for 18 mos. and the side effects are easilt tolerated. I have high stage II on xray. Try a little extra tonic water with your gin?

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