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  1. Thread: Nose Bleeds

    by Dorothea
    Replies
    4
    Views
    136

    Re: Nose Bleeds

    In early September I had two massive nose bleeds, it streamed out like a faucet. It scared me really bad. The first time I went to Urgent Care and they packed it, had to stay there for over an hour....
  2. Replies
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    Views
    585

    Retuxin infusion

    Has anyone ever gotten sick after getting Retuxin?

    Sent from my XT1650 using Tapatalk
  3. Thread: Lung Flare

    by Dorothea
    Replies
    11
    Views
    975

    Re: Lung Flare

    Good luck to you too!! I will be getting Retuxin every 6 months. I hope all is fine with you now! Be safe!!

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  4. Thread: Lung Flare

    by Dorothea
    Replies
    11
    Views
    975

    Re: Lung Flare

    This time Wegeners didn't go after my kidneys, they do believe it is Wegeners. I was supposed to start Retuxin treatments before this happened, that will be the next step!! Thank you for your input!!...
  5. Thread: Lung Flare

    by Dorothea
    Replies
    11
    Views
    975

    Re: Lung Flare

    Thank you for your response! Have a Happy 4Th!!

    Sent from my XT1650 using Tapatalk
  6. Thread: Lung Flare

    by Dorothea
    Replies
    11
    Views
    975

    Lung Flare

    I'm in the hospital, Thursday morning I coughed up blood. Dr. sent me in for blood work and a cat scan. I was admitted and had another procedure where they inject ink into your lungs and scan them...
  7. Thread: Cold Turkey!!

    by Dorothea
    Replies
    2
    Views
    501

    Cold Turkey!!

    Has anyone ever stopped taking Imuran, cold turkey, and what happened, if anything?

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  8. Thread: Mds!!

    by Dorothea
    Replies
    7
    Views
    1,266

    Re: Mds!!

    Yes, I was on dialysis for 2 months, my kidneys are only at 25%. That was three years ago. That's why I'm on Imuran. I'm afraid now that I have MDS it might set me up for another flare!

    Sent from...
  9. Thread: Mds!!

    by Dorothea
    Replies
    7
    Views
    1,266

    Re: Mds!!

    Have you had a flares?

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  10. Thread: Mds!!

    by Dorothea
    Replies
    7
    Views
    1,266

    Re: Mds!!

    I've been taking 150mgs.

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  11. Thread: Mds!!

    by Dorothea
    Replies
    7
    Views
    1,266

    Mds!!

    I'm a member of this group, I was diagnosed with Wegeners in 2013.
    I was just diagnosed yesterday with MDS(Myelodysplastic Syndromes) it's a disease of the bone marrow. I honestly believe I ended up...
  12. Thread: Leukemia

    by Dorothea
    Replies
    9
    Views
    1,125

    Leukemia

    Has anyone developed cancer while in remission with Imuran or any immune suppressing drugs?

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  13. Replies
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    836

    Blisters on my index finger!!!

    Has anyone ever have blisters like these with their Wegeners?https://uploads.tapatalk-cdn.com/20180920/382af017b18d973eafbe4ac97809ce43.jpg

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  14. Replies
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    855

    Re: dialysis question

    Hello,
    What percentage of kidney function does he have left? I was on dialysis for 2 months and my kidneys came back to 25% I can live the rest of my life at 25%. If I lose my kidney function I...
  15. Replies
    2
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    914

    Wegeners is back!

    No Immune system and a cold!
    Has anyone had a cold while on immune
    suppressing drugs? I have a cold, What should I expect?
    Thank You!

    Sent from my BLN-L24 using Tapatalk
  16. Replies
    11
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    2,502

    Re: light's a shining

    Congratulations to you! I'm happy for you!

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  17. Thread: Imuran

    by Dorothea
    Replies
    5
    Views
    831

    Thank you very much to all of you!!! Sent...

    Thank you very much to all of you!!!

    Sent from my XT1575 using Tapatalk
  18. Thread: Imuran

    by Dorothea
    Replies
    5
    Views
    831

    Imuran

    I'll be starting Imuran on January 1st. I was wondering if anyone in our group has ever been on Imuran for suppressing their immune system? If you have can you tell me if it put you in remission....
  19. Replies
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    1,746

    Good luck to you Jaha! How long have you had...

    Good luck to you Jaha! How long have you had Wegeners?
    Dorothea

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  20. Replies
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    3,016

    Poll: O neg. Sent from my XT1575 using Tapatalk

    O neg.

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  21. Replies
    6
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    834

    Thank you gilders!😊 Sent from my XT1575 using...

    Thank you gilders!😊

    Sent from my XT1575 using Tapatalk
  22. Replies
    6
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    834

    Thank you Pete and Kstick😁 Sent from my XT1575...

    Thank you Pete and Kstick😁

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  23. Replies
    6
    Views
    834

    Creatinine level

    When I left the hospital on July 27th my creatinine was at 4.8 now I'm at 3.6, I've been producing more urine. Should I be optimistic that my kidneys are on their way back?
  24. Thread: Dialysis

    by Dorothea
    Replies
    6
    Views
    819

    Hi gilders! Thank you very much for the quick...

    Hi gilders! Thank you very much for the quick response! You're input is very much appreciated. You've been so helpful😁

    Sent from my XT1575 using Tapatalk
  25. Thread: Dialysis

    by Dorothea
    Replies
    6
    Views
    819

    Dear gilders, What is your opinion on...

    Dear gilders,
    What is your opinion on peritoneal dialysis and hemodialysis? My kidney doctor suggested it would be a good option for me, I need to do more research on this. I'm still at 5% kidney...
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