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Type: Posts; User: little jerry

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    Re: Prednisone Reduction, Flonase

    hello
    I am trying to taper from 5mg pred to 2 1/2. Joint pain seems to come back when I get there so I go back up to 5. I keep trying. Seems like my meds are always being adjusted by someone.
    ...
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    Re: Extremely Frustrating Flare.

    I have had that symptom also and they called it migratory arthritis. My elbow might hurt a couple of days and my foot might hurt next. I used to wonder what I did to it to make it hurt. I just had...
  3. Re: GPA diagnosis very recently confirmed

    you are lucky to get your diagnosis before the damage sets in. I was in and out of the ER a few times, spent a few weeks in hosp. then I was intubated for a couple weeks and when i woke up could...
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    Re: New to Wegener world

    hi Cathy..
    I'm 72 years and I have had WG for 6 years now. I have not been on the forum a couple months now. I also had a little bout with depression. So I got out my crochet hooks and made a few...
  5. Re: Winter Rise in Renal AAV Cases, Possibly Due to Infections, Reported in Study

    thanks for the Howard Hughes reference it made me laugh hard. I feel like Howard when I go outside also but never thought of it.
    I had a RTX on Dec 1, so I have hidden from everyone. I also...
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    Re: You won't believe this !!!!

    I would all the local news paper and a local TV news crew after I called my att. I might make a sign and walk around the front door of the hospital too. I have done this before and it sometimes...
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    can you have Wegeners just a little?

    I have had Wegeners for 6 years, I think. I am 71 now and I can remember when I was 15 and my joints hurt so bad that I couldnot walk. Drs said "growing pains". In my 20's and 30's it was arthritis...
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    Re: Wegeners and Kidneys

    The beginning of Wegeners is the toughest time of all. When it is stable you can carry on in your new normal. Then you will be able to start exercise and you will have to set new goals to reach. ...
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    Re: NYT article

    This story brought back old memories, and all the lessons that I learned along the way. I can't imagine being a teen and having Wegeners. This story made me count all my many blessings that I have...
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    Poll: Re: Epstein Bar Virus Curiosity

    I've had cold-sores in the past and lots of my friends had mono. So I guess that makes me a yes.
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    Re: Rituxan and infections

    My first RTX in 2011 I developed a gaping hole on my low spine that they had to pack, clean,try this, and that and I had a nurse that came for about two weeks, and antibiotics and it went away, ...
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    Re: My introduction

    Hello and welcome aboard our world.
    About 6 yrs ago when my adventure started, I was given an IVIG at the normal speed. In around 5-10 min. pain began to grip my low back and quickly traveled...
  13. Re: Your experience with the healthcare system when you first began suffering from GP

    Unless you are one of the lucky ones to get a quick answer, this sounds very familiar to all of us I think.
  14. Re: Searching for anybody that has connected their WG to vaccines.

    My Dr. told me NOT to get any live vaccines. In the last 6 yrs I have got all flu, shingle, pneumonia, pvc 13 shots with no problem.
    Remember all of us respond differently to to things. Sometimes...
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    Re: Design Stage Feedback

    I want that app. I just started Pred yesterday again. It would be nice to track symptoms of a new drug, and good results also.
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    Re: GPA and Low T

    First of all welcome to the forum. I have been in stage 3 kidney failure for about 6 years. When my T count gets below a number my dr. will give me for a shot of T. One a month for 3 or 4 months,...
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    Re: Problems with breathing

    welcome to our forum.
    With GPA it is not a good thing to " wait and see". Time is important for you. Call your Dr. and see them. Or go to ER if breathing gets worse. I have tried to be a hero a...
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    Re: New Introduction

    welcome to the forum Hope.
    I have got more answers to my questions about wg here and answers to questions I didnt think of yet here.
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    Re: Well It's time to retire

    welcome to retirement. I found that I got 2x busier after ret. Enjoy your g-children. I live on the same property as my grandchildren and get to enjoy them every day. I go to baseball with a 7yr...
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    Re: Newbie Introduction

    In 2011 I had to have my spleen removed, so my body tries to catch everything that comes by and I can't shake it. Also remember to get all flu and pheumonia shots as soon as available.
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    Re: Newbie Introduction

    I also have the same hand rules, "wash them,then wash them again." I keep hand- sani in the auto, if I see water and soap , I use it. If I have to shake hands with someone I must clean them again,...
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    I have tried pot for my pain and I think that it...

    I have tried pot for my pain and I think that it works well. It works for me about 75% of the time. Pain breaks through and I am using codeine again. I have went from every 5hrs. to 12hrs. I plan to...
  23. Thread: Anemia

    by little jerry
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    I also spent a long time trying to get my...

    I also spent a long time trying to get my platelets up to a safe level. My spleen was the bad guy, and it had to be removed. after that my blood counts returned to normal. I hope you find the prob....
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    new weggie

    In may 2011 i had a 4x bi-pass things went well. Sept i found myself in the ER again. my spleen was eating my platelets fast TTP. Then I had my spleen removed, and fixed that prob. now all your labs...
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