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Autoimmune disease

Posted , 12 users are following.

robert_18769
robert_18769

Hey, I have a question. Has anyone looked into treating the autoimmune part of sarcoidosis, if so, what was the outcome?

0 likes, 31 replies

31 Replies

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  • camey03589
    camey03589 robert_18769

    Posted

    I do treat the auto immune but the down side is the tests and treatment are very costly and typically not covered by insurance. I would recommend it!
  • tyagi
    tyagi robert_18769

    Posted

    Interesting and valuable responses. Just a thought. Sarcoidosis is now classified as an inflammatory disease, but the major form of treatment is immunosuppresant drugs.or 'let's see what works and not worry about classification'.
    • camey03589
      camey03589 Anhaga

      Posted

      PMR I think is the classification they need to use for the drug companies to pay for you treatment. It is an autoimmune disease that creates an inflammatory response
    • camey03589
      camey03589 Anhaga

      Posted

      It is auto inflammatory but they use the code PMR to get the drugs they need to treat your condition?
    • Anhaga
      Anhaga camey03589

      Posted

      PMR means polymyalgia rheumatica.  It is an actual condition.  I don't live in the UK so perhaps you are referring to something to do with the NHS which I don't know anything about?  

  • camey03589
    camey03589 robert_18769

    Posted

    I am doing that with diet and supplements, I have less days I feel like crap instead of all days.
  • Lisaom
    Lisaom robert_18769

    Posted

    Hi Robert. I have neurosarcoidosis. I also have sarcoidosis in the skin, lung cavity, lymph nodes. Initial treatment was 1000mg metalprednisone through IV then oral prednisone. He then started me on immune suppressants infliximab infusion monthly at first and then 6 weekly when he started me on another immune suppressant Imuran. I recently was put to 8 weekly infusions but the past few days I've been getting symptoms out of the blue where I was woken with violent headache at 3.30 in the morning which was exactly like how I presented last year and since the headache have pressure in my eyes like eyestrain and photophobia. I'm getting an eye health check tomorrow and hoping I'm told it's not a relapse .

    • camey03589
      camey03589 Lisaom

      Posted

      You and I seem very similar except I've never gone into remission, God bless us all

    • Lisaom
      Lisaom camey03589

      Posted

      Hi Camey03589, my eye exam came back good but I'm still having the headaches and sensitivity to light. I've to back to my consultant now on Tuesday. I'm surprised it's back because of the treatment I'm having but that's the curse of this horrible disease!

    • camey03589
      camey03589 Lisaom

      Posted

      I have been told that blindness whether temporary or permanent is a big possibility. I was diagnosed in 2011 but have just now started to suffer with headaches, let me know what you learn? God bless
    • zss
      zss Lisaom

      Posted

      Hello Lisa, like you I cringe when I get attacks of uveitis causing severe eye pain, redness and a complete phobia to light. The first thing that comes to mind is a relapse of sarcoid activity. It has already happened once and I had to go back on prednisolone.

      My sympathy is with you and all of those here, who suffer's from this appalling disease.

  • zss
    zss robert_18769

    Posted

    Hello Robert, I had two courses of prednisolone spanning 2014 and 2015 for chronic sarcoidosis.

    The first one didn't work after I had tapered off it.

    The second course was the same, starting at 50mg for a short period, then going down to 37.5mg for a longer period before the gradual tapering off to 0mg.

    I couldn't tolerate 50mg for too long, that's why I was on 37.5mg for a longer period.

    Earlier this year, I had several tests done and the result is the sarcoidosis has stopped spreading. This is the best I can hope for and that it won't become active again.

    Remember, there is no cure for chronic sarcoidosis. Only control of the damage it does. It is, afterall, a hyper-active immune response to an unknown cause and origin. 

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