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Stage of sarcoidosis

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casey37144
casey37144

Just yesterday got results of biopsy and told I have sarcoidosis. Immediately started on 40 mg predglisone and azathioprine an immune suppressant. Doc didnt tell me much except basic stuff I already knew, but after more research it sounds like I have chronic or stage 4 sarcoidosis, Anybody know? I will ask doc when I talk to him again just kind of concerned now. Thanks for any feedback.

0 likes, 8 replies

8 Replies

  • Guest
    Guest casey37144

    Posted

    Hi Casey

    I'm sorry to hear about your diagnosis. I haven't had my biopsy (Nov) yet but I'm wondering what symptoms others are having.  I've been quite poorly for a number of weeks and I really don't know whether it's the Sarcoid or something else.  All the symptoms seem quite generic.  

     

  • bintaro63402
    bintaro63402 casey37144

    Posted

    hi casey3714...do u have any symptoms??

     

    • casey37144
      casey37144 bintaro63402

      Posted

      I have sore joints and muscle fatigue, always tired, red burning eyes with blurred vision at times. Dry cough that comes and goes. But not too bad. Doc said lungs looked worse than gt scan. But in pretty good health otherwise I deal with it
    • Guest
      Guest casey37144

      Posted

      Much the same as you.  Incredible fatigue, painful joints and muscles night sweats.  I have also been diagnosed with osteo-arthritis all over my body.  My original diagnosis was Pagets Disease but I didn't really respond to treatment. Had a steroid injection that didn't do anything. Had an infusion of Palmidronate, no better and just had an infusion of Zoledronate.  When I was off sick recently I had all those symptoms plus dizziness and vertigo and seriously high blood pressure.  Thoracic consultant and rhuematologist think it's sarcoid, so I'll have the lung biopsy.  CT scan showed bi-lateral scarring.

      I think the worse thing is the tiredness.....

    • casey37144
      casey37144 Guest

      Posted

      Yeah after work I just don't want to do anything, but I have to. Hope you get the answers your looking for, and biopsy isn't so bad pretty quick and pain less. Just more tired after for a few days.

  • gina1970
    gina1970 casey37144

    Posted

    I'm a stage 4 in sarcoidios. It's attacked everything I have pain 24/7 the one you sould ask is the long term use of Prednisone and the side effects it can and will cause you. Not to mention the weight gain. I had to be removed from Prednisone due to it making me go crazy and I hurt alot of people physically and did jail time to many to count but that's what happened to me not saying that you will go down the same route. Just becareful. Watch for signs .it will also weakens your veins which makes it harder for blood work.etc. I have a power port in my chest for blood draws and meds. I'm also giving myself methotrexate injections once a week. Do you know where all the sarcoidios has attached it's self to in your body

    Gina

    • casey37144
      casey37144 gina1970

      Posted

      Wow sorry to hear that. As far as I know just in my lungs, haven't checked anywhere else yet

    • gina1970
      gina1970 casey37144

      Posted

      I wish you the best and that they find a treatment plan that will work for you everything they tried on me didn't work.

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