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I have been diagnosed with sarcoid in my small airways. Because of worsening PFT's over the last 2 years, my doctor put me on 20mg of prenisone which did not result in any improvement after 2 months. Now he is talking about trying one of the alpha blockers (eg Remicaid) which I understand is more often used for rheumatoid arthritis. Does anyone have any experience with this?
Avascular necrosis Arthritis Imuran Rheumatoid arthritis Prednisone Sarcoidosis Methotrexate Glaucoma
Hi, one of my doctors want to try me on this medication. I searched the internet and went to the pharmacy and got a print out of the side effects etc. The medicine is expensive and my doctor is trying to get my insurance to cover the complete cost. The drug is given thru an IV and its takes appox 2 hrs to minister. Check out this website American Journal of Respiratory and Critical Care Medicine, it might have some helpful information it's an article on Infliximab (Remicade) Theraphy in patients with chronic sarcoidosis. ajrccm.atsjournals.org/cgi
Thanks for this response. The journal is a good one to know about. I'll be interested in knowing whether you proceed with the Remicaid.
I have sarcoidosis in my lungs, heart, esophagus, etc. I did not respond to prednisone or methotrexate, and I would not have lived very much longer as my lungs were disappearing and I am not a candidate for a transplant. I am now receiving infusions of remicade. It has worked like a miracle. The morning after the first infusion I could feel the difference. I could walk a couple of blocks from where I park at work to my office with 4 liters of oxygen and not have to stop along the way to catch my breath. I was not able to do this for many months. Since then I am consistently better. My PFTs show it. I don't think I am dying, at least not in the immediate future. I had to fight tooth and nail to get my insurance co., Blue Cross, to cover the infusions, but with the help of my state's attorney general's office and my doctors I got them to approve the treatments.
Wow, that's great news and I'm glad for you. I assumed that the reason prednisone didn't work for me was because my inflammation had turned into fibrosis/scarring and that nothing would work on that. Do you know what the Remicaid is doing for you? Is it reducing inflammation that prednisone couldn't reduce in your case or is it actually reducing scarring (which I didn't think anything could do.)
The scarring is apparently irreversible but the remicade appears to be reducing the secondary infections that go along with this disease. Prednisone did nothing for me except make me fat and crazy. I am now able to do simple things like go shopping without using oxygen.
Sounds like you didn't get a high enough dose of Pred for long enough period of time. Usually a pulse dose of 60-80mg of Pred for 5 days then taper by 5mg every 5 days, repeat Sarc labs at 20mg and if they are normalized then continue to taper the Pred in tiny increments. The doc did not titrate your Pred according to your repeated blood work test results? Have you gotten a second opinion on the pred dosing or other options?
Don't forget to have a thorough eye exam by an opthalmolgist.
Regards,
I.
I started out on 60mg a day of prednisone and over a 3 year period I averaged 80mg a day. I had to get off the prednisone because of the side effects. I ended up with avascular necrosis of the hips and glaucoma.
Had to have both hips replaced by the time I was 48 years old. I am presently on 500mg of remicade every 6 weeks along with 50mg of Imuran every other day. The information about the insurance companies are true. This drug is expensive and the insurance companies do not want to pay for it. Good luck.
I had the same problem where I just stopped responding to the Prednisone. BY the second dose of Remicade I was feeling better. By the 6 month CT scan I was "significantly improved" (and we made sure the same radiologist read the scan.) At 1 year, I had energy, was breathing better, my liver and spleen lesions had cleared. The key words for your doc to use in the appeal letter are, "medical necessity and compassionate need."
Good luck and God bless!
Mary
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
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