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Type: Posts; User: richard052018

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  1. Replies
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    Re: Hello from Shawny

    I've heard Pred described as the devil's tic tacs. I couldn't agree more. They will certainly mess with your emotions, and as Andrew stated, the weight gain is unavoidable (I put on 35 pounds from...
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    Re: Transplant

    Gilders,

    Just want to let you know that I'll be thinking about you on the 19th and pulling for you. Is it possible for a close relative or friend to update the board on your progress if you are...
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    Re: Dry cough

    I don't have much to add medically, but I just think you're great around here and I hope you get the care you need to get rid of that cough. Blessings to you.
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    Re: Cold, flu or flare

    If you have any concern about Dr. Villa Forte, you need to check out who wrote the Merck Manual for GPA:
    ...
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    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...
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    Re: Newly dx 11/28/18 and scared!

    Matt,

    If I had to guess they went with Cytoxan because man you were in serious bad shape, and it works faster than the Rituxan. I know @drz said they had to go to CTX over RTX or he wasn't going...
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    Re: Newly diagnosed and scared

    Back in November it looks like Vanderbilt opened a new vasculitis center. My apologies if you have already gone down this road, but even my cardiologist mentioned when he was at Vandy as a resident...
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    Re: Origin Story

    As for the Urine strips, the Cleveland Clinic recommends testing once a week. I test a little more than that, but this disease has turned me a little neurotic (wife is reaching her limits with me). ...
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    Re: Fatigue post RTX

    Gilders,


    Thank You for all of the info!! Best of luck to you with your upcoming transplant!! We are all pulling for you!!
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    Re: Fatigue post RTX

    Alysia,

    Thanks for getting back with me. Yes, I got 1G RTX back on Dec 11th.

    This is such a weird disease. Urine labs are fine, inflammation labs are fine, but creatinine is steadily getting...
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    Re: Origin Story

    Well, I must say you've truly done your homework. Best of luck with your journey.

    If I could pile on to Pete's advice, I will add the following:

    --Get Brittany into an eye doctor (preferably...
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    Re: Fatigue post RTX

    Thanks for the words of encouragement, but just got labs back from local Rheumy and Creatinine has jumped to 1.44 from 1.28 last week. Local Rheumy is out of the office today but will get with me on...
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    Fatigue post RTX

    I've just completed my first 6 month RTX maintenance (1 gram) infusion on 12/11. About a week post infusion, I've been hit with awful fatigue. It hasn't gotten better. I was concerned I was having...
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    Re: New Member - Newly Diagnosed

    Very sorry to hear about your nose issues. The positives you can take from this is it appears the disease has not spread to your lungs or kidneys, where life threatening damage can occur.


    Now...
  15. Re: The scariest 14 months of my life and then Wegeners

    I feel your pain. Lord, I feel your pain. You have a 9 year old princess. Mine is 7. I just pray we both get to watch our daughters grow up (and be somewhat functional during that time). The...
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    Re: Fructured Toe

    Sorry about the toe. I broke mine stepping out of the shower years ago before diagnosis (banged it on the bathtub). Not fun.

    As for the nausea/chills, I would bet they are a medication reaction....
  17. Re: New Member - two decades of patient experience

    Welcome to the board. Your experience will be valuable addition to the already impressive group of "experts" this board has on our condition. The knowledge base around here blows me away, as well...
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    Re: Wg destroyed my life

    How ironic that he walks out as you are getting RTX infusions, considering by all accounts on the web and my own personal experience, RTX is a miracle drug that keeps the GPA at bay. If the drug...
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    Re: 13yr daughter has Wegeners

    I don't have much to offer other than well wishes, and I also wanted to comment on the members of this forum being able to bring up studies and clinical trials at the drop of the hat. Unbelievable. ...
  20. Re: Curious...how many members work with this illness

    I am also highly interested in the response to this inquiry. Diagnosed back in May 2018. I myself went back to work after about 3 weeks (11 of those days in the hospital, pulmonary hemmorage). I...
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    Re: Newly diagnosed

    No Problem. My eye doctor wants to see me 4 times a year, at a minimum. Don't fool around with the eyes.

    A good article on GPA and the eyes:
    ...
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    Re: Newly diagnosed

    Welcome to the group. While I'm a bit of a newbie myself, my only recommendations to you are related to your high Pred dosage:


    --Check your blood sugar daily. Get Primary Care to prescribe you...
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    Re: Help: what is the protocol

    Thanks for the feedback on the RTX. Everyone (drs. included) has pretty much advised me that it is way too early to tell if the RTX is working. I'll just weather the storm with the high dose pred...
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    Re: Help: what is the protocol

    Thanks for the quick reply. Do you have any feedback on the drug choice to induce remission (RTX vs. CTX)?
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    Help: what is the protocol

    I have consistently picked up Trace blood on my Multistix Urine dipstick tests the last 2-3 days. Last Monday (7.9), I went out of pocket and got my Creatinine tested directly through LabCorp (it...
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