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Thread: New here, being diagnosed

  1. #1
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    Default New here, being diagnosed

    Hi all, so glad to have found this forum. My husband is in the midst of confirming Wegenerís GPA. He is in the hospital receiving the IV steroid blast.

    He is 42, previously healthy (former military pilot), and we live in the Washington DC metro area.

    Background story is my husband was diagnosed with rheumatoid arthritis in early April after a few weeks of shoulder pain that started migrating around to other major joints. Primary dr did lots of labs and noticed a slightly elevated RF (27) so referred to a rheumatologist who first gave meloxicam and then he moved to mtx and prednisone. However we werenít thrilled with how that rheumatologist office was run, very difficult to get in touch between appointments (and weeks waiting for appointments) for med adjustments with side effects and rude staff. So, he switched to a different rheumatology practice about a month ago and she doubled the mtx to 20mg/wk. after 5-6 weeks total on mtx still no improvement, actually the pain and side effects were worsening with things like mouth sores, scleritis, and lots of pain especially in the legs.

    then about 2 weeks ago my husband developed a cough which worsened and culminated in respiratory distress and an ER visit with a pneumonia diagnosis. The next day we saw the rheumatologist and she mentioned that she had run a test with his labs the week before that showed positive ANCA and with everything and the pneumonia, she now suspected Wegenerís and we needed to head to the hospital and be admitted to get to the bottom of it. my husband also learned in the hospital that he had been having blood in his kidneys for weeks but since it wasnít red he didnít know it was there.

    While in the hospital we have been followed by rheumatologist, nephrologist, internist, and pulmonologist. First he had an echocardiogram and a TEE to rule out endocarditis. Then when those were negative he had a kidney biopsy yesterday and they started the steroids while we wait for the pathology. The team here is all quite confident that it is Wegenerís. My husband feels 90% better from the steroids- he can move around better than heís been able to since this all began! We are very hopeful that with the early diagnosis and effective medications he will get into remission and back to a somewhat normal daily life. We are still in shock about the whole thing. I hope to learn from your experiences.

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  3. #2
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    Default Re: New here, being diagnosed

    Glad you were lucky enough to get an early diagnosis and proper treatment. Things now sound encouraging.
    Knowledge is power! Wisdom is using it to make good decisions!

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  5. #3
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    Default Re: New here, being diagnosed

    Hi @Wegwife

    It sounds like he may indeed have wegs. That said, he should be treated by a doc with solid wegs expertise. You may want to ask how many wegs cases they see in a year. If itís a small number (<50), itís a good idea to look for greater expertise. You may have to go to Johns Hopkins or Univ of Pennsylvania. You can search for vasculitis doctors on the Vasculitis Foundationís web site.

    With proper treatment, he can set a goal of returning to a lifestyle that closely resembles what he had before wegs. It may take awhile (took me 2+ years), so be patient.

    Feel free to ask questions. Thereís a lot of experience available.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Default Re: New here, being diagnosed

    It sounds like you are making good progress and have some good suggestions already. I would add that the steroids are life saving and can help to feel better but they are in no way a primary treatment that can begin to reverse the progression of the illness. Looking forward to a solid diagnosis and immediately starting on a primary treatment like Cytoxan or Rituxan to begin true recovery.

    The biopsy should give some solid answers. In my case it was a sinus biopsy that tested positive for WG. At that point my main problem was sinus.

    Many of us have been extremely ill (sometimes MORE than once) and then had amazing recovery. No reason your husband can't be one of those stories.

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