User Tag List

Likes Likes:  35
Page 2 of 2 FirstFirst 12
Results 11 to 12 of 12

Thread: New Member from Indiana

  1. #11
    Join Date
    Nov 2020
    Location
    Gold Coast, Queensland
    Posts
    49
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New Member from Indiana

    Hi, Peter from Australia here. I was diagnosed October last year, primary treatment was two infusions of Rituximab, then high-dose mycophenolate and panafcort (50mg daily initially, now tapered down to 5mg daily). The infusion procedure is pretty easy, but takes about eight or nine hours per session with saline flushes, etc. I had two infusions a fortnight apart. the infusion itself had no untoward effect on me, the main worry was being careful of the cannula whenever I moved. I drove myself in to the infusion centre, drove myself home again, was a bit sleepy after that, but that was probably because Iíd been sitting in a chair for eight or nine hours. Thereís nothing to worry about with monoclonal antibodies, I actually hate the Panafcort Iím on more.

    it sounds like you had a pretty quick diagnosis, lucky to get a doctor who knows what to look for. Thatís the main step in pushing this thing into remission, and keeping it back.

  2. Likes cbaker0812, drz, Alysia, mishb liked this post
  3. #12
    Join Date
    Nov 2023
    Posts
    7
    Post Thanks / Like
    Mentioned
    1 Post(s)
    Tagged
    0 Thread(s)

    Default Re: New Member from Indiana

    Hi Christine,

    I know this is an old post, but i am also from Indiana and newly diagnosed. I was wondering how you are doing 3 years later.

    Quote Originally Posted by cbaker0812 View Post
    Well here goes.... My troubles all started in November of 2019 when I flew to Aruba and back for vacation. Upon return, I could not get my ears to clear, thought maybe a sinus infection but after 2 rounds of antibiotics, still had a plugged feeling in my ears... By February 2020 I was having so much drainage and pain in my ears they put in tubes to relieve the pressure. Forward to spring, still unexplained ear drainage and sinus stuffiness. I am a cyclist so we started our outdoor riding. Repeated Sinus infections ensued with only about a week relief in between antibiotics. I noticed fatigue while riding, but wrote that off as getting back in shape and then blaming it on the fact I was breathing through my mouth because I was always plugged up. Finally got the ENT to do a CT scan of my sinuses after months of nothing working. I started noticing a wheezing feeling in my chest on occasion, however, I once again blamed that on Asthma I had as a child. The CT scan showed a severe Sinus infection, however, by that time, I was having severe rheumatoid pain in my hands, knees and feet that I couldn't explain. I got up one morning and just knew something else was wrong. My doctor being on vacation was a blessing. As they sent me to the ER. 7 days in the hospital, lots of tests, biopsy and a Wegener's diagnosis on August 12th, 2020. I was sent home on methotrexate and 60 MG of Prednisone. I am currently still on 25 mg of Methotrexate and 40 MG of Prednisone as my eyes were swelling too much and I had rashes on my legs on 60 mg. First follow-up CT scan showed a solid improvement in the lesions in my lungs, however my doctor feels that they should have been gone not just improved with the high dose of medications I was on. She has recommended that I do a 4 week infusion of Rituxan which is being scheduled. This is all so new to me and I have never been sick in my life, so although I think the list of side effects are scary, I also feel like it is my only option to get this suppressed. My infusions are to be once a week for 4-5 hours each time for 4 weeks.

    Has anyone else done that type of Infusion that can share how it made them feel? I am staying on the methotrexate while doing this as well as the prednisone and can't image more swelling and side effects. I am eating very clean and back to exercising several days a week. I was feeling pretty good until the last couple of weeks and now I am tired again and my sinus and ears are changing and my toes and fingers are numb again, so I feel like my current treatment is probably not doing the trick as the doctors stated.

    I will admit I am still in the little scared, a lot of unanswered questions stage, but I am a fighter and I will get this in remission as I have a new granddaughter and a lot of life left to live!

    Thanks for listening - Christine

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
  •