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  1. Replies
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    In remission for 2years, and off meds for 7...

    In remission for 2years, and off meds for 7 months. So far, so good, except all the aches and pains associated with old age are now popping up.


    Sent from my iPad using Tapatalk
  2. Replies
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    I was told after my surgery to limit any lifting...

    I was told after my surgery to limit any lifting to 40 lbs for 6 months and to 100 lbs thereafter.


    Sent from my iPad using Tapatalk
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    David, I had an inguinal (?) hernia and had to...

    David, I had an inguinal (?) hernia and had to have it repaired. The danger in my case was that intestines could have been "caught " in the muscle break which could have been dangerous. The procedure...
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    Hello Dale, my doc sends me for the blood test...

    Hello Dale, my doc sends me for the blood test one week before the appointment, so it is new at the time we talk. About the neuropathy pain, I used to have pain, burning sensation and some pain,...
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    Hello Eric, and welcome to the forum. The WG...

    Hello Eric, and welcome to the forum. The WG patients on this forum are the most knowledgeable and supportive people when it comes to WG I got to know since I was diagnosed about 4 years ago. I'm...
  6. Thread: Flu vaccines

    by RudiK
    Replies
    119
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    28,017

    I was told by all my docs to get the flu shot,...

    I was told by all my docs to get the flu shot, just don't get the nasal spray type since it consist of live bacteria which is a no-no for us.
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    I relpased in February 2014 and my docs put me on...

    I relpased in February 2014 and my docs put me on 3g (1.5 g 2x day) per day. It took a while, at least 4 weeks, before we noticed any improvement. The high dosage did cause some intestinal...
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    I'm so sorry to hear of Phil's passing. We all...

    I'm so sorry to hear of Phil's passing. We all lost a great friend and advisor. I'm sorry, Alysia, that you and Phil couldn't spend more time together, at least you made his last few days more...
  9. Thread: Muscle cramping

    by RudiK
    Replies
    25
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    8,588

    I agree with everything everyone has said. I'd...

    I agree with everything everyone has said. I'd like to add that what helps me is to elevate my feet when I go to bed, at least is has stopped most of the cramps in my feet and lower legs.
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    Thanks for the update Alysia, I hope and pray...

    Thanks for the update Alysia, I hope and pray that Phil will get better. Good luck to both of you.
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    I'm so sorry about all the problems you have to...

    I'm so sorry about all the problems you have to endure. I hope the lung transplant will work and you will feel better and be with us for a long time. You are in our thoughts and prayers.
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    I hope the doctors find a solution and you feel...

    I hope the doctors find a solution and you feel better. You are in our thoughts and prayers.
  13. Replies
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    Docs used kidney biopsy and blood test to...

    Docs used kidney biopsy and blood test to diagnose.
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    9,587

    Happy Birthday, Phil, and all the best. Thank you...

    Happy Birthday, Phil, and all the best. Thank you for all your advice, suggestions and humor. I hope you have a great day.
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    Hello Deb, I relapsed in February and was put on...

    Hello Deb, I relapsed in February and was put on 3g of Cellcept (3 pills at 500mg in the morning and 3 pills at 500 mg in the evening). The only side effect is some intestinal discomfort. Other than...
  16. Replies
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    11,882

    Back in Ocober 2013 I "talked" my doc into...

    Back in Ocober 2013 I "talked" my doc into "weaning" me off the preds. At the time I was on mg, and we did taper off, by December 2013 I was off of preds and felt good. Unfortunately by the end of...
  17. Replies
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    7,289

    Great news, Mike, let's hope that it will get...

    Great news, Mike, let's hope that it will get better and better.
  18. Thread: Kidney Biopsy

    by RudiK
    Replies
    19
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    4,981

    They did a kidney biopsy on me three years ago...

    They did a kidney biopsy on me three years ago and it was non-event. The nurse spend about 15 minutes preparing, taking an ultrasound and explaining what would happen. After the doc arrived they...
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    Hello Christina, the blood sedimentation rate...

    Hello Christina, the blood sedimentation rate jumped from 5 to 43, c-anca jumped from less than 1:20 to 1:160, and the serine protease jumped from less than 20 to 96.
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    Here is the result of my first try at drug free...

    Here is the result of my first try at drug free remission. My docs tried drug free remission in December 2013 after being in remission for 2 years. I started with dropping the preds (was on only 1mg)...
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    I did think about it, and in Oct 2013 convinced...

    I did think about it, and in Oct 2013 convinced my docs to taper me off the preds and immuran. I took the last pills in late Dec 2013. And guess what? My next scheduled blood test on Jan 23 2014...
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    My primary WG doc is a Nephrologist since the WG...

    My primary WG doc is a Nephrologist since the WG severely damaged my kidneys, I also see a Neurologist due to sever nerve damage in my feet, legs and finger tips. My PCP is an Internist, she is also...
  23. Happy Anniversary Alysia! Although I don't post...

    Happy Anniversary Alysia! Although I don't post very often, I make it a point of reading everyone of your posts, they are always informative and full of hope. Don't ever stop.
  24. Thread: Neuropathy

    by RudiK
    Replies
    11
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    10,113

    I lost feelings in my feet and toes about a month...

    I lost feelings in my feet and toes about a month before being diagnosed with WG. The itching and burning started about a couple of weeks after the loss of feelings. When I was diagnosed with WG I...
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    Hello Barbara, my BP was 196 over 110 when I was...

    Hello Barbara, my BP was 196 over 110 when I was first diagnosed. The docs blamed it on kidney failure (I lost 60% of my kidney function due to WG), I was given (and I still take) Benicar HCT and...
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