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Sarcoidosis: What treatments have you had with few side effects?
Has anyone had a good result with their treatment with very few side effects?
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Has anyone had a good result with their treatment with very few side effects?
Interested in more discussions like this? Go to the Lung Health Support Group.
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My husband has only found the 1000 mg steroids help but then you can't stay on them
We are using gabapentin for the legs it kind of helps
We see a great Dr in fort Wayne Indiana John Collins the NEURO center. He is helping us and listening
Steriods
Steroids is the best but can't stay on them
Gabapentin seems to help
Hi I'm Chesney wife Tammi I feel very lost too on how to help my husband
It's OK to vent Robyn, it's good for you! I have an autoimmune disease and it is hell. I'm to the point where I can take almost nothing. It's so hard and it can sure feel like it has taken your life away. It's good to hear you are able to connect with your kids when you can. My daughter was often the "mom" and as soon as she got her drivers permit, she became the primary driver. Let them help you if you need and don't feel bad about it. I went to Mayo a few months back and wrote about my experience, you can find my story here if you'd like to read it. https://medium.com/@michelledigiacomofitzgerald/mayo-clinic-americas-calcutta-bfd60d9e326
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1 ReactionI was diagnosed with sarcoidosis over 18 years ago and likely had it for a good ten years before that. I kept telling the doctors I saw that I couldn't breathe and they kept telling me that I didn't have asthma. No, I didn't, I had sarcoidosis which a good pulmonologist diagnosed. We talked about options for treatment and I said I wasn't excited about the side effects of prednisone. He wrote a doctors though out the world about outcomes when a patient takes the drug verses when one doesn't take it at all. After this analysis and the r view of studies, the conclusion was that there was no difference in outcome after 5 years between patients that took prednisone and those that didn't. My doctor and I decided that I would not take any drugs. I frequently went in for lung tests. The disease progressed for a few years and then went into remission. I still struggle with climbing hills, steps, running, and strenuous activity. To this day, however, I am convinced that this was the right course of action for me. It likely is not right for others but it is my experience. An article from the National Institute of Health "Relapse occurred frequently in patients with sarcoidosis who had been treated with corticosteroids, and rarely occurred in patients who had not been treated with corticosteroids in the past. The striking difference in relapse rate between treated and untreated patients suggests that patients with disease that would later be severe and protracted were almost unerringly identified early in their course. One explanation is that severe presenting symptoms portend a protracted and recurrent course; an alternative explanation is that corticosteroids contributed to the prolongation of the disease by delaying resolution. "
I hope this helps.
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2 Reactions@dsisko, Hello and welcome to Mayo Clinic connect!
Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.