Search:

Type: Posts; User: savedbygrace

Search: Search took 0.00 seconds.

  1. Replies
    19
    Views
    5,395

    excellent resource and reply, morning sunshine!...

    excellent resource and reply, morning sunshine! I'd love to hear from you again about it in the future, as this is very important to me.
    i never would have though about probiotics stressing the...
  2. Replies
    19
    Views
    5,395

    Wow! That really is so awesome. No prednisone...

    Wow! That really is so awesome. No prednisone weight too... That's so great. I'm starting to realize that if all organic/grass fed is financially unattainable, I could possibly still do AIp or wapf...
  3. Replies
    19
    Views
    5,395

    This actually made me laugh! nope I'd never...

    This actually made me laugh!

    nope I'd never stop treatment, that'd be nuts! :)

    i Really meant that I'd like to hear positive experiences from people who may have tried focusing on anti...
  4. Replies
    19
    Views
    5,395

    Thank you for clarifying and I'm so glad to hear your feedback!

    Yes! Thank you for clarifying! I know "success" is a confusing word and I wasn't implying cures either. :) you stated it so well.

    I really want to focus on becoming healthy in general... A la...
  5. Replies
    22
    Views
    5,420

    I think its great to talk about natural ways,...

    I think its great to talk about natural ways, even if they dont cure us. :) So thanks for getting the conversation started.

    I'm just as interested in doing what i can do be healthier, or as...
  6. Replies
    26
    Views
    6,863

    At age 18 when I first got Wegeners, drug induced...

    At age 18 when I first got Wegeners, drug induced remission and full remission felt GREAT! I had my ups and downs but overall I did very well on the medicine. Started a new job within 3 months of...
  7. Replies
    19
    Views
    5,395

    Well, I'm late to the party so I don't know if...

    Well, I'm late to the party so I don't know if anyone will ever read this.

    I don't take all that's on this list but I'd like to!
    This would be my ideal:

    Folate (because I read an article that...
  8. LOL!!! Thank you I needed that laugh!!

    LOL!!! Thank you I needed that laugh!!
  9. Replies
    44
    Views
    6,471

    Fits me too. I was most severe, nearly died,...

    Fits me too. I was most severe, nearly died, isolated mostly to lungs, with some other symptoms.

    Yet I did very well, It was 10 years before my next flare.... Including 5 years with no medicine...
  10. Yeah, I also wonder if Rituximab has long-term...

    Yeah, I also wonder if Rituximab has long-term issues that we don't know about yet. Like how long was it studied in humans? Are we the guinea pigs? (I hate to bring it up but I honestly wonder...
  11. Oh yes, and Cytoxan has been successful with me....

    Oh yes, and Cytoxan has been successful with me.

    2003 6+ months CTX + lots of pred. Then four years of MTX + low dose pred.
    Then FIVE YEARS of remission!! No meds!!
    2013 6 months CTX + pred....
  12. So true

    Annekat, you're so right!! I do love to hate it but I AM so thankful for Cytoxan. No infusions is def a perk. :) I was really devastated by menopause as a young wife... wanted a family, didn't want a...
  13. Anyone React To Rituxam With Heart Rate Issues?

    Hi there, I'm new here. Has anyone else had a problem with Rituxan slowing down their heart too much?

    I never had heart trouble before. But we had to stop my infusion because my heart rate dipped...
  14. 1 Bad Experience on Rituximab (plus benedryll)

    Looks like I'm the only one but I had a bad experience with Rituximab. Sent my heart rate down in the teens, had to stop immediately after the first "push" infusion. Didn't get my heart rate back up...
  15. Replies
    10
    Views
    2,378

    Hey, I just wanted to say thank you ALL of you...

    Hey, I just wanted to say thank you ALL of you who posted, and for Miranda who went out on a limb and asked this question.

    I am 29 years old and had a bad reaction to Rituximab, and so had to go...
  16. Thanks Pete, Thanks for the tip! It looks like I...

    Thanks Pete, Thanks for the tip! It looks like I might end up having to travel or go with the consulting option and hope that collaboration works.

    Still holding out hope that someone would have...
  17. Anne, thank you for your welcome. I've had...

    Anne, thank you for your welcome. I've had wegeners for 12 years now, (I was a teen when I got it!).

    I really hope someone in Florida knows something about the rheumatologists in SWF.

    My...
  18. Oh wow! Thank you so much!

    Wow!! I didn't know about this website - this is great!
    I just emailed VPAN the name of my awesome Weg doctor in Richmond, to add to their list.

    It's so nerve racking to see a new doctor. I've...
  19. Needing a good doctor in South West Florida -- Port Charlotte, Fort Myers

    I've been very spoiled with a great doctor in Richmond, Virginia.

    But we might be moving very soon... too far to commute.

    Does anyone have an update for good doctors with Weg experience in...
Results 1 to 19 of 19