User Tag List

Likes Likes:  5
Results 1 to 3 of 3

Thread: Hello everyone! Im a Wegeners patient diagnosed in my early 20s

  1. #1
    Join Date
    Dec 2021
    Posts
    2
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Hello everyone! Im a Wegeners patient diagnosed in my early 20s

    Hi! My name is Pryana and Im from California, Im surprised I havent heard of this forum before. I thought I would introduce myself! I was diagnosed with GPA when I was 23, in January, itll be 5 years since I was diagnosed. My manifestation was scleritis. I remember waking up one morning with a very red eye. I didnt think much of it since I wasnt having any pain and thought it was maybe conjunctivitis. A few days went on and it wasnt getting better, days turned into weeks and this is when I started having severe pain (I wouldnt wish this pain on anyone). I went to the eye doctor and he said I had scleritis. We know scleritis rarely shows up randomly and is usually due to some kind of underlying disease. The doctor ran a bunch of tests on me and I was found to have a very high ANCA and thus I was diagnosed. I have whats called limited Wegeners, thankfully my lungs and kidneys were spared. Other symptoms Ive had before I was officially diagnosed was recurring nose bleeds and extreme fatigue but it was the eye symptom that pushed me to go see the doctor. My rheumatologist put me on a high dose of prednisone and started me on Methotrexate, my liver didnt like that so much so we had to stop that and for almost 4 years now, Ive been taking Cellcept. I had a bad flare up last December in which my doc had to up my dose of Cellcept and thankfully it worked. Ive been on prednisone on and off throughout the years and I had every side effect listed, I like to call it the devil drug lol. I recently started having nose bleeds again after not having it for almost 4 years, hoping everything is okay! Im looking forward to hearing everyone elses stories

  2. Likes freakyschizogirl, drz liked this post
  3. #2
    Join Date
    Aug 2010
    Location
    Essex, UK
    Posts
    985
    Post Thanks / Like
    Mentioned
    4 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hello everyone! Im a Wegeners patient diagnosed in my early 20s

    Hi Anabanana

    Welcome to the forum.

    I've been diagnosed 11yrs now with GPA and also have the "limited" version - GPA really loves my nose and has been happily co-habitating on and off in there for years.
    Since diagnosis i have had my struggles with fatigue - it remains my number 1 symptom and the bane of my existence.
    Kudos on the nose bleeds - before i was on medication and in the first few years this was another major symptom for me but with better treatment and being in remission this seems to have gone.
    Sometimes i will have a random nose bleed and its nothing - either my nose is too dry or i've damaged it from blowing too hard. If you are concerned its always good to talk it over with your specialist.

    Pred is the devils tictacs.
    "I believe that I have seen a negative attitude kill people, but I don't think that a positive one will cure you. However, I know that it Helps". Jack

  4. Likes Masha, Alysia, mishb liked this post
  5. #3
    Join Date
    May 2022
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hello everyone! Im a Wegeners patient diagnosed in my early 20s

    Hi Anabanana and Freaky Schizogirl,

    I have the same fondness for prednisone that both of you have. That is I hate it. I've been on high sustained doses with what seemed to me an agonizingly slow taper in the past with a prior rheumatologist. My current rheumatologist gives me steroids very rarely and then only for short periods. There seems to be a wide variety of approaches to treating this and I often wonder how they make those calls. Anyway, it would be really nice if they came up with a pill that does the good things steroids do (suppress the symptoms, easy to take) and none (or at least fewer) of the bad things (all the awful side effects).

    Anabanana, I sympathize deeply with your report of pain. I'm not saying my pain is the same as yours but I have had episodes of what I call facial pain (like many wegener's symptoms, hard to describe to someone else, particularly to my doctors) that is almost other worldly in its intensity. I can't read or watch TV or do much of anything but sit up in bed and feel it. Getting control of the WG brought that pain under control. But it comes back from time to time, especially when I'm having a bad flare. I think I've had episodes similar to your scleritis, but I called it conjunctivitis. I had an especially dramatic episode after I had the second COVID shot. Brief small courses of prednisone have helped with both of these symptoms in the past.

    I hope you're both doing well now and wish you both the best!

    Ruby.

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
  •