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  • #23118
    msue5
    Participant

    I have tried to post an update and they disappear when I go to submit but just was able to post so trying again. After 26 PET Scans I am NED! Unfortunately many issues with autoimmune conditions. After Yervoy and Nivo I developed Scleroderma, Thyroiditis, Adrenal Failure and now possible Polymyositis. I developed Pneumonitis and Nivo stopped. Now having steroid withdrawal with profound fatigue, joint pain, brain fog. Possible muscle Biopsy to diagnose Polymyositis. Trying to be grateful for NED but I feel awful!

    Mary Sue

    #69899
    Linny
    Participant

    You are one of my heroes, Mary Sue. To hear you are NED is wonderful news! Sorry to hear of the other setbacks. Hope the steroid withdrawal and other symptoms pass quickly so that you can enjoy your NED dance.

    #69900
    Catherine Poole
    Keymaster

    Mine too! Your courage is unbeatable. I hope you feel better soon and sorry you’ve had issues posting. Take good care and you will be in my thoughts.

    #69901
    Thomvdv
    Participant

    woop woop!

    #69902
    msue5
    Participant

    Thanks everyone. Had my PET Scan yesterday. No results yet except they did say they could see the muscle inflammation from possible Polymositis. Muscle Biopsy sometime in May. hoping to move to every 6 mos Scans. The Radiation is starting to concern me. 26 PET Scans,Cyberknife, Radiation 4 weeks, countless Ct Scans. There was no choice since I always had active but stable disease. The axillary nodes could not be palpated easily. Maybe a good topic for Webinar or blog. I can’t be the only one with concerns about this. Another great thing I’m celebrating is I have finally started to gain weight. Endo is thinking since Adrenal Gland has been stabilized with medication that my Thyroid is functioning properly allowing me to gain weight. I was down to 90 lbs. I would lose 2 lbs in a day at times even though I was eating every 2 hrs. I was drinking Boost like I really liked it! I think I disliked this so much because I looked sick for the first time.

    Linny thank you for your kind words. Hope you are doing well.

    Catherine Wasn’t your grandson diagnosed with Dermatomyositis which is Polymyositis with a rash?

    #69903
    Catherine Poole
    Keymaster

    Yes, he was diagnosed at 15 months with JDM, juvenile dermatomyositis. He simply had a rash which was a precursor to this dangerous automimmune disease that destroys the muscles. The ultimate treatment seems to be the infusions of IVIG (a blood product) as his blood numbers are right on target now. What a scary time. The disease is often detected late in children because a rash isn’t something you worry about normally. We are very fortunate to have CHOP in our backyard where they caught it. He is now going to be 5 and definitely doesn’t like folks in white coats. The autoimmune diseases are VERY difficult to understand as you well know. What a memory you have! Will I see you at our event this year? I hope so for a big hug..

Viewing 6 posts - 1 through 6 (of 6 total)
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