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  1. Thread: Thyroid issues

    by Mas78
    Replies
    3
    Views
    824

    I can't commit on the prednisone or RTX affecting...

    I can't commit on the prednisone or RTX affecting your thyroid. At the lab I use the TSH range is .27-4.2, so your 5.3 is a little high but I wouldn't get too worked up over it yet. Myself and I am...
  2. Thread: lung issues

    by Mas78
    Replies
    190
    Views
    11,733

    I haven't checked in on the forum for awhile, ...

    I haven't checked in on the forum for awhile, Sorry to hear that you needed this surgery done vdub. I am glad to see you are now a couple weeks past the surgery and doing good. I hope that in a...
  3. Replies
    7
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    759

    My doctors tell me that Wegener's doesn't attack...

    My doctors tell me that Wegener's doesn't attack the thyroid, with that said 15 years after getting diagnosed with Wegener's my immune system had started attacking my thyroid. I got diagnosed with...
  4. Thread: Rituximab

    by Mas78
    Replies
    163
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    15,941

    gilders, I know from previous posts that you...

    gilders,
    I know from previous posts that you have had blood clots like myself. do you wear the 30-40 mmHg stocking for your swelling? I get by with the 20-30 on my left leg now but I have worn...
  5. Replies
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    2,233

    I still have vivid memories of my EMG from almost...

    I still have vivid memories of my EMG from almost 15 years ago. almost kicked the lady when she shocked me on the back side of the leg behind the knee. first time I didn't do anything so she put the...
  6. Replies
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    1,036

    Corrie, welcome to the group. I'm glad that...

    Corrie, welcome to the group.
    I'm glad that you have gotten diagnosed. Now that you have started treatment you will start feeling better. I was on cytoxan also mainly due to kidney involvement. ...
  7. Thread: Finally...

    by Mas78
    Replies
    20
    Views
    1,555

    Congrats! I hope that you never need those meds...

    Congrats! I hope that you never need those meds again.
  8. Replies
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    1,458

    BarbNY So far my doctor hasn't given me the...

    BarbNY So far my doctor hasn't given me the radioactive iodine as she feels we should give the methimazole a try first, or at least I get into an endocrinologist for a 2nd opinion. I'm in the pre...
  9. Replies
    10
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    1,268

    For those that may need compression socks I...

    For those that may need compression socks I highly recommend the Jobst brand. I've worn them almost daily (on just one leg) for over a decade due to vein damage from a DVT. I've tried other cheaper...
  10. Replies
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    1,458

    Thank you for the replies. what little I have...

    Thank you for the replies.
    what little I have read up on Graves I hadn't seen any mention of rheumatologists treating it but I figured you guys would know the answer.
    since starting the Methimazole...
  11. Replies
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    1,268

    For me my kidneys had a burning sensation when I...

    For me my kidneys had a burning sensation when I was sick, and by the time I was admitted to the hospital my urine was very dark. and for several years after I was off treatment they would get the...
  12. Replies
    9
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    1,458

    Wegener's and Graves disease

    Thought I would just ask and see if anybody has both of these, Wegner's and Graves disease.
    about a month ago my yearly wellness checkup labs showed my TSH was zero. Retook the blood work two weeks...
  13. Replies
    10
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    1,374

    Welcome to the forum, I'm sure you are already...

    Welcome to the forum, I'm sure you are already finding out that there is a lot of knowledge shared on here so be sure to ask anything you may have a question about.
  14. Thread: Horrible taste

    by Mas78
    Replies
    6
    Views
    527

    I remember the same thing when I was on Cytoxan...

    I remember the same thing when I was on Cytoxan and prednisone, the issue went away after I was done with treatment.
  15. Replies
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    2,380

    Welcome Urbanator I can relate to your moms...

    Welcome Urbanator
    I can relate to your moms muscle fatigue and pain, that's what really drove me to see a doctor when I got diagnosed back in 2000. from what I've read and my Rhumy tells me Rituxan...
  16. Replies
    14
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    1,807

    Welcome to the group, I hope that things get...

    Welcome to the group, I hope that things get straightened out for you soon. You've been given some good advice so far. Be sure to ask whatever you want as someone will relate and give you more...
  17. Replies
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    1,951

    I haven't really ever told to many people I have...

    I haven't really ever told to many people I have WG. but last summer my neighbor told me in an email she got some labs back and that she didn't have Wegener's. so I had to ask if she ment...
  18. Replies
    12
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    1,725

    Hi there annmarie your friend is correct that...

    Hi there annmarie
    your friend is correct that Wegener's / GPA is treatable. I never got to take Rituxan, it wasn't around so I got Cytoxan. It took me a few years before I was off all my meds for...
  19. Thread: New to the site

    by Mas78
    Replies
    10
    Views
    1,714

    You have been given some pretty good advice...

    You have been given some pretty good advice already. It never hurts to get a 2nd opinion before taking a drug like cytoxan, but if it's truly needed it's better than the alternative.
    One little...
  20. Replies
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    2,877

    Annekat, the alternating doses to taper is what i...

    Annekat, the alternating doses to taper is what i did after getting down to 20 or 30mg, been so long i don't remember excatly. I don't feel that it shocks your body as much after getting used to the...
  21. Replies
    23
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    2,877

    Over 2+ years on prednisone I went from 80mg down...

    Over 2+ years on prednisone I went from 80mg down to either 5 or 7.5, my labs were a little wacky, i believe my red blood cell count tanked, and my rhumy took me off pred and cytoxan. It made me...
  22. Thread: forum searches

    by Mas78
    Replies
    3
    Views
    894

    That's very useful tip to bring up vdub. I've...

    That's very useful tip to bring up vdub.
    I've used it in the past looking for specific projects with photos on another forum, and it works great.
  23. Replies
    13
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    1,849

    Marta, That is sad to think that the group...

    Marta,
    That is sad to think that the group didn't seem to want any information of what they could have for proper treatment. I would bet that someone will read your posts and pursue to see if they...
  24. Thread: family in denial

    by Mas78
    Replies
    10
    Views
    1,830

    Joey, I was in really bad shape the first time I...

    Joey, I was in really bad shape the first time I seen my Rheumatologist. my local doctor at the time was concerned enough he got the rhumy to work me in the next day. as I recall I was there quite...
  25. Replies
    8
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    1,316

    Welcome to the group Joey Pete's pointing you...

    Welcome to the group Joey

    Pete's pointing you in a good direction. My Rhumy has told me if I would have gotten sick now rather than 14 years ago he would have put me on Rituxan instead of the...
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