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...
Type: Posts; User: savedbygrace
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...
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...
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...
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...
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...
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...
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...
LOL!!! Thank you I needed that laugh!!
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...
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...
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....
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...
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...
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...
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...
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...
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...
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...
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...