User Tag List

Likes Likes:  31
Page 2 of 2 FirstFirst 12
Results 11 to 14 of 14

Thread: Journey to being diagnosed, treated, and already first flare up

  1. #11
    Join Date
    Oct 2019
    Posts
    11
    Post Thanks / Like
    Mentioned
    2 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Journey to being diagnosed, treated, and already first flare up

    Quote Originally Posted by Masha View Post
    Onirin,
    You sure have had a long miserable journey before being diagnosed. I am glad you found us.
    There are many who can relate to all if not some of your experiences.
    Like Natie, my anca always reads positive. There are times it reads positive and I feel good. My doctors continue to tell me that anca is not the only determination for where I am with this condition.
    This brings me to your situation, and others whose anca has read negative. Why do doctors continue to say “No Canca, no GPA”
    I sound like a broken record, but I will say it again. Do not see just any rheumatologist. If you live in an area where it is possible to find one that is experienced with Wegeners, then by all means go to that doctor.
    If you care to share the part of the country where you live, others will help you. Many members go to the Cleveland Clinic and see a wonderful doctor, Dr. Villa Forte. I live in the Charlotte NC area and drive a few hours to go to Duke for a specialist.
    Please don’t hesitate to reach out to us.
    Masha
    Hi Marsha,
    I read you are going to Duke to get treatment. My rheumatologist is from Greenville, SC. My ENT referred me to him. A friend asked me if I wanted to see someone from Duke, but I have not made up my mind on that yet. What is your experience with Duke?

  2. #12
    Join Date
    Feb 2018
    Location
    Carolinas
    Posts
    243
    Post Thanks / Like
    Mentioned
    13 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Journey to being diagnosed, treated, and already first flare up

    It has been excellent. I see Dr. Nancy Allen. She has been researching, teaching classes and treating Wegeners for thirty years. If I have any questions, she responds through the portal immediately. She orders all blood tests, analyzes and sends me a thorough explanation on each one. I am able to receive my Rituxan infusions and blood tests in between in Charlotte. During visits she doesn’t leave the room until I feel everything was explained and all my questions asked and answered. Now for the bad part. My last visit with her will be in March. She is retiring. I am guessing she will introduce me to my new doctor at that time. Normally I make my next appointment with the scheduler, but during my last appointment Dr. Allen designated the date and time she will see me. I will certainly pass on the name of my new doctor.
    I personally know four people who go to Duke, all for different things. In one case, the man had cancer. His daughter is a physician here in Charlotte. She made immediate arrangements for him to go to Duke. As I write this he and his wife are enjoying a fabulous vacation in Rome!
    Masha

  3. Likes Keith, Alysia, annekat liked this post
  4. #13
    Join Date
    Oct 2017
    Location
    North Carolina
    Posts
    42
    Post Thanks / Like
    Mentioned
    0 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Journey to being diagnosed, treated, and already first flare up

    You will be in good hands at Duke.




    Sent from my iPhone using Tapatalk

  5. Likes Masha, Pete, annekat liked this post
  6. #14
    Join Date
    Apr 2011
    Location
    Olympia, Washington
    Posts
    6,979
    Post Thanks / Like
    Mentioned
    18 Post(s)
    Tagged
    0 Thread(s)

    Default Re: Journey to being diagnosed, treated, and already first flare up

    Welcome @Onirin and @Mnjet . I came in late to this thread, and excellent responses have been given. What's most noteworthy from all the posts including yours is the wide variation in different people's symptoms and experiences , the different lengths of time before getting a diagnosis, even with good doctors, and the variety of usefulness of certain tests in indicating a diagnosis, GPA activity, or a lack thereof. All of those things rang true with me.
    My ENT diagnosed me by nasal biopsy after 2.5 years of treating me for what seemed to be a never ending recurrence of sinus and ear infections and allergies. Before that, my pulmonologist doubted I had GPA because my c anca result was barely positive.
    When it was clear I was positive, I was started on oral cyclophosphamide, (Cytoxan, CTX), a very strong drug commonly used before Rituxin(RTX) was approved for WG/GPA. This was in 2011, right around the time of that approval. I never needed Rituxin, because CTX improved things quickly, along with prednisone, of course, and I eventually was switched to methotrexate, (MTX), still with prednisone, and have done well with that for about 7 years. Today, RTX seems the preferred med for new patients, even though it is expensive and usually takes more time to act, because CTX is known for some dangerous risks, such as eventual bladder cancer. So we drink lots of water, as we should anyway. All GPA meds carry some risks.
    One of you asked what it was like the first year of recovery. It may vary widely, but my first couple of months I was pretty incapacitated, in bed all the time except for my pred-driven meals, which were eaten in front of the computer while logged into this wonderful Forum. I was able to drive myself briefly to doctor's appointments and to the grocery store. Then, I gradually resumed a "normal" routine of work, starting with short doses. Within a few months I applied successfully for SS Disability, including Medicare, at age 58. My work is a small self-employed business that has never made a lot, which made this approval easier for me than for someone with a "real" full-time job. But this is an option one might consider, especially if around my then age of 58, or older. I have remained on Disability and now it is Social Security. I am a lot better but still have multiple issues from permanent tissue damage, including excess mucus production, hearing loss, reduced lung capacity, a "saddle nose", or collapsed septum, and often crushing fatigue.
    It sounds like you both have doctors you are happy with and are picking up a lot of knowledge about the disease. These are important benefits. Please keep us all posted on your progress.




    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 11-23-2019 at 04:36 AM.
    Anne, dx'ed April 2011

  7. Likes Masha, 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
  •