User Tag List

Likes Likes:  43
Page 2 of 2 FirstFirst 12
Results 11 to 13 of 13

Thread: Hello from another new member

  1. #11
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,896
    Post Thanks / Like
    Mentioned
    11 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hello from another new member

    Hi, Tricia,
    I can't add much to the above, but just found your post and wanted to welcome you to the forum. My WG/GPA started out like yours, with ear infections and sinus infections, which in my case were attributed to allergies, which I do have, but have never manifested quite that way before. But I didn't know any better and it took until 2.5 years later, when it went into my lungs, for me to get a correct diagnosis and treatment. Though I did get prednisone with the antibiotics previously, which helped, I'm sure. Since I had lung involvement along with the sinus and ear stuff, I was started on cyclophosphamide (Cytoxan, CTX), a stronger drug than methotrexate (MTX). The other very strong drug, and largely preferred today is rituximab (Rituxan, RTX), but at that time in 2011 had just been approved, or was in that process, for use as a first line treatment for WG. Besides, it is very expensive, and I doubt my very basic insurance would have paid for it, and certainly would have insisted I try CTX first. The CTX worked, along with high to medium doses of prednisone, and I was eventually switched to MTX, which has kept my symptoms under control along with a lower dose of pred. I don't know what would happen if I tried to taper off of both meds. For now, I'm OK with things as they are. The rheumatologist I'm now seeing has seen about 20 cases of WG before me, which is still not considered a lot. There are more experienced docs about an hour and a half from me, considering traffic, but I choose to stay close to home unless things become a lot more serious. You might check the Vasculitis Foundation website for lists of preferred docs which you might be able to see or have your doc consult with, if she is willing. Examples of highly thought of centers for WG treatment in the US include Mayo, the Cleveland Clinic, Johns Hopkins, and some places in Boston. I'm sure there are others. Be sure to keep us posted and ask any questions. You can find a lot of helpful old posts and threads in the archives, too. Best wishes for making progress in controlling this wacky disease!

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Anne, dx'ed April 2011

  2. Likes Tricia E, Alysia, woz liked this post
  3. #12
    Join Date
    Apr 2019
    Posts
    6
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hello from another new member

    Thank you for the welcome Anne. I am sorry to hear that you also had your lungs affected. So far my lungs and kidneys are ok. Knock on wood that it stays that way.
    According to my rhumatologist she does not feel that the insurance will pay for infusions unless we can show the methotrexate is not working. I think it is kind of silly that I would have to get worse to get better meds but insurance has gotten tighter lately. I will definitely ask her about the possibility of CTX.
    As for doctors, I have heard of a doctor in Dallas who has experience with Wegener's. I am only 30 to 40 minutes north of Dallas and also hate driving in city traffic but if I don't see any improvement at my next visit to my rhumatologist, who is in my town, I might try to get a referral to the doctor in Dallas.
    Once again thank you! Everyone here is so nice and helpful. I am truly appreciative.

  4. Likes annekat, Alysia liked this post
  5. #13
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    177
    Post Thanks / Like
    Mentioned
    8 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Hello from another new member

    Welcome Tricia. This is a marvelous site. Some of the people here have really had a rough go of it. They are more than willing to share their experiences. What I have learned here is worth gold. You mentioned that there were small traces of blood in your urine, and that none of your doctors have ever had a patient with Wegener's.
    In my humble opinion you need to see the doctor with experience in Dallas. No matter what we share with you, we are not doctors. I wasted valuable time before seeing an expert. Please donít make that mistake. I wish you all the best, and please keep us posted on your journey.
    Masha

  6. Likes annekat, Alysia, Dirty Don, drz, woz, seied 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
  •