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Thread: Anyone in Atlanta?

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    Default Anyone in Atlanta?

    Hi,

    Is there anyone with Wegener's GPA in Atlanta, Georgia, USA who would be interested in meeting up?

    Jeannette

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    Default Re: Anyone in Atlanta?

    Hi Jeannette,

    I am in Jacksonville/ St. Augustine area, so not very very close. Still, interested in meeting up.

    Kathy

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    Default Re: Anyone in Atlanta?

    Hi Kathy,

    Thank you for responding. I have family in Florida. Maybe, next time I go down to visit, I can call you to see if it's convenient for you to meet. Or we could meet half way?
    Not sure where half way would be. Have to look it up. Do you go to the Mayo clinic in Jacksonville for treatment? Do you have a Dr there that's good and experience with Wegeners?
    BTW, a little background on me. I am 55 and have two grown up daughters who are 24 and 27. Had been healthy all my life until last year. Started with a walking pneumonia or bad lung infection supposedly. Although the Cleveland Dr. I went to see said that was not pneumonia but the disease starting. Anyway, I am on my 2nd RTX infusion. Had the 2nd bc the blood markers were slightly elevated and I was starting to feel like shit again with a log of joint pain. Wont feel the benefits of this infusion for several weeks or maybe months. In the meantime back on prednisone (low dose) and taking lots of Gabapentin, nortriptiline and sometimes lyrica for my neuropathy. It attacked my connective tissue in my extremities and left me with bad neuropathy in my feet. Sometimes it's hard to cope with the nerve pain/discomfort but I manage with those medications.

    Jeannette

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    Default Re: Anyone in Atlanta?

    Hi -
    Thank you, for your response. Hope the sluggish return response didn't worry you! Those options for meeting I agree, either or some version are good and we go from here.
    I had gone to Mayo just for a check about my course of treatment from the Nephrologist who treats my MPA /(Prolly+GPA)Wegeners pauci-immune glomerulonephritis. Their clinic was okay to good. The Mayo Nephrologist added Losartan bp meds to help with the proteinuria and rising blood pressure. I went just for a 2nd opinion.
    I began on Mycophenolate(Myfortic) a year ago but it has been tough. Following another nine mo of this drug, when and if I have a relapse to treat, I don't think I will return to this drug because of stomach/intestine pelvic pain. - I'd had some scans several types of scans, they were clear.

    I am 55 also, my children are a boy and a girl both 13 years old. I'm pounding the pavement (the internet) with dire job search and have some extra helpings of stress on my plate at the time. Love only kids - our twins and two cats+ three dogs, & hubby. That is about what I can say there. I am excited to get out of the house for work - My Husband works from home.
    Putting it in the best way possible, nearly two years stretch of time working together at home is the maximum we have ever wanted to do, historically.

    My experience has some similarities to your progression with Wegener's. My Story being prior to the Lung (& Kidney) I already had numerous problematic issues of joint pain, severe exhaustion for at least the three years prior to onset of eye inflammation-episcleritis in Sept2015. Two months following then pneumonia that wouldn't go away or get better prompted test and found elevated ANCA -MPA so had a diagnosis. Yet, had a Kidney stone pass and immediately after that Kidney dysfunction - not super bad -37%. I will also transition to low-dose of prednisone (from 5 mg now) if labs show no
    surprises, in two months from now.

    Mayo physician said he would have taken me off of cyclophosphamide (started the Cytoxan chemo pills in Hospital ) sooner than the ten months that I took it under the direction of who -now again I am back under the care of.

    I know what you mean by the neuropathy!! How I wish I did not know. I had that symptom so severe (feet also) four -five years ago, even. Yet now, because
    I had been treated with a real strong antibiotic for the pneumonia, this drug made the connective tissue issues worse - Started with an L. Leviquan, I believe. Anyway - it is known for that as one of its side effects. I had pretty severe neuropathy in my Hands and have bilateral carpal tunnel compression problem (had surgery on rt. side, as I'm r-handed), trigger-finger and osteoarthritis and big swelling, pain of my thumbs and fingers upon doing much work.

    We will have to talk further about meeting. Say- maybe into the new year. I also would jump at a chance to meet even prior to then but I don't know if that would present issues more cumbersome or taxing for one or both of us.
    Thanks for your story and Sharing!! Big Beleaguered here, facing the holiday season. I'm looking forward to more chats with you, as you clearly understand the same struggle to cope with the tiredness and pain.

    Kathy
    Last edited by Bbkayecoop; 11-25-2017 at 02:40 PM.

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