User Tag List

Likes Likes:  25
Page 2 of 2 FirstFirst 12
Results 11 to 12 of 12

Thread: Lung Flare

  1. #11
    Join Date
    Jul 2018
    Posts
    65
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Lung Flare

    My disease presented with joint pain, fatigue, loss of appetite, night sweats, and alveolar hemorrhage revealed via coughing up blood and bronchoscopy and ground glass opacity in the CT (the same crap they talk about with COVID). I had blood in urine but a negative kidney biopsy. My creatinine is high normal now so I assume there was also some kidney damage. High dose pred cleared everything up and I was back to work before starting RTX infusions, but the doctors went with RTX therapy anyhow considering all of my symptoms. I've been OK, but then I went and bragged about it in another post on this forum (just stupid) and now I've picked up a little congestion/cough (no fever, SPO2 normal, so far). I've gone to a few kid softball games so who knows if I picked something up. The way this is going it seems we are all going to get COVID at some point.

    Anyhow, if this is your first lung involvement yes, it is terrifying, but the drugs work well on the lungs (at least that is what is advertised), and given you have gotten into treatment hopefully long term damage will be minimal.

    Have they increased your prednisone? When I started the RTX treatment, I got the 2 1G blasts of Pred. I'm still on 6mg of pred. Sadly, I'm starting to see some bone loss around the teeth. My guess is they will be gone before long. Nonetheless the pred does work and hopefully it will keep you in good shape until the RTX can perform its magic.

    Sorry you've had to spend so much time in the hopsital. Hopefully you are home or you'll be home soon.

  2. Likes andrew, Alysia, annekat liked this post
  3. #12
    Join Date
    Oct 2017
    Location
    Miami Beach
    Posts
    88
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Lung Flare

    I hope they got you some weekly alendronate/fosamax to prevent more bone loss.

  4. Likes drz liked this post
Page 2 of 2 FirstFirst 12

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •