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Thread: Cold, flu or flare

  1. #11
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    Default Re: Cold, flu or flare

    Best to you Masha and John. Let me know if I may be of support. One Rituxan infusion down, 1 to go. The. First time i’Ve had 1 gram every 2 weeks. No one qualified is following my care locally. May have to move.

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  3. #12
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    Default Re: Cold, flu or flare

    Quote Originally Posted by [email protected] View Post
    Unfortunately sed rates don’t reliably go up in relapses (although you would think they would!). Also, take it from experience, to treat ourselves with prednisone is both potentially dangerous and it confuses our clinical picture no end. What is the usual medication you’re treated with for relapses?
    I am on a pred booster taper down half way back to my normal maintenance of 5 mg daily. It has been a while (few years) since I needed some extra pred for my GPA symptoms. I also had a minor increase in my AZA maintenance meds for a few days too.I was surprised about how fast the pred boost of 3x regular dosage seemed to reduce my GPA flare symptoms. In the past my labs often followed my symptoms but not this time even though some symptoms like frequent nosebleeds seemed worse than in the past. My local lab has proven to be very erratic on doing the ESR test correctly since it requires accurate manual timing and they only get it correct about one third of the time, depending upon the skill of person doing the test. They do the CRP test OK so my doctors and i use that to assess whether there is any inflammation. In the past I was lucky that my ANCA scores mirrored my symptoms but not this time, probably from being on maintenance meds and in drug induced remission for several years.

    I gave upon on seeing a world renown GPA expert since I found out I get better and faster service from the rheumatologist who initially treated me and he consulted with the GPA expert that I later saw, mainly for their research study and follow up evaluation. He can and would consult with the"experts" if we felt it necessary.

    I think the main thing is to trust and have confidence in your treating team and to replace any doctors that don't seem to warrant your trust. Local ER doctors have often helped me in two ways. Some times they find another problem causing my symptoms and stress, like the flu or bronchitis or sinus infection etc. Some doctors have asked for my thoughts on what might be best way to address my presenting issues and have often followed my suggestions. This works fine if I have assessed my situation correctly and know what treatment is needed but is dangerous if I misdiagnose my problem but often we know our body and symptoms of GPA better than anyone else. And if we have been through a similar situation several times our guesses are usually very good.
    Last edited by drz; 02-02-2019 at 03:08 PM.
    Knowledge is power! Wisdom is using it to make good decisions!

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  5. #13
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    Default Re: Cold, flu or flare

    If you have the freedom to move, then by all means put your health first. Is it back to California for you?
    Be safe.
    Masha

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  7. #14
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    Default Re: Cold, flu or flare

    drz,
    Sounds like you are good at staying on top of things. I never gave thought to the labs not doing the work properly.
    For many of us it is impossible, due to travel and distance, to see the very finest Rheumatologist. As long as we stay knowledgeable about the treatment of this disease and are aware of what our bodies are telling us, we respond. I now see a specialist for everything. No one stop shopping. As you say you must TRUST those treating you. Just like in a marriage, trust is everything. And who was it that said ‘trust but verify’? It is late and I am sleepless.
    Masha

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  9. #15
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    Default Re: Cold, flu or flare

    Update, no giant crust today. Feeling a bit more energy. The throat is not quite as sore. Think I'm coming out of it.

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  11. #16
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    Default Re: Cold, flu or flare

    Quote Originally Posted by John S View Post
    I appreciate your input. I saw the rheumatologist at Loyola in Chicago on the same day as my recent blood draw. I'll see my specialist in Cleveland Clinic in March. If my current symptoms continue, Ill be calling both of them.
    Lucky you! Two major heavy hitter specialists! We have no one to call. I’m in touch with Dr. Calabrese at Cleveland but he has “suggested” we see a Vanderbilt Rheumatologist who appears to be unavailable to us. Oh well. I tried.

  12. #17
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    Default Re: Cold, flu or flare

    Quote Originally Posted by [email protected] View Post
    Lucky you! Two major heavy hitter specialists! We have no one to call. I’m in touch with Dr. Calabrese at Cleveland but he has “suggested” we see a Vanderbilt Rheumatologist who appears to be unavailable to us. Oh well. I tried.
    ‘Contact Dr. VillaForte at. The Cleveland Clinic

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  14. #18
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    Default Re: Cold, flu or flare

    John: glad to hear you are feeling better, and not to hijack your thread, but it is nice to see a post from drz, and that things are improving for you as well. I read a few week back you were having a flare and got concerned. Hope you are both doing well.

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  16. #19
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    Default Re: Cold, flu or flare

    Quote Originally Posted by John S View Post
    ‘Contact Dr. VillaForte at. The Cleveland Clinic
    Thanks John.
    I was unable to get appts with Dr. Calabrese or Dr. Langford so made appts with Dr. Villa-Forte. What is she like? How should we prepare for the culture shock of appearing in Cleveland later this month from Nashville for possible extended medical visits, tests, care? Cold weather gear, I would expect.

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  18. #20
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    Default Re: Cold, flu or flare

    KWNorton, I have heard nothing but good about Dr. Villa Forte. I'm sure Pete in Ohio will be chiming in soon.

    Anne

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

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