Rituxin - lots if folks seem to be on it. Good results is what I have read for most.
Rituxin - lots if folks seem to be on it. Good results is what I have read for most.
I was diagnosed by a periodontist, so getting diagnosed is often the genius and dedication of an individual doctor. Could also be the phase of the moon. Who cares, you got there in time.
It's critical that you're keeping a close eye on symptoms. Don't let anything slip by, especially when they have you reducing pred or adding/changing any medication. Keep learning. Maybe in thirty years you'll be the world expert and take over Andrew's job of operating this forum.
Do check out the Vasculitis Foundation website: Vasculitis Foundation It gives a list of Vasculitis centers, names of specialists etc. - so glad your thoracic surgeon suspected Wegeners and diagnosed it too. But he's probably not a specialist at remission and maintenance therapies. Your rheumatologist might have treated several Wegeners patients, and may be on the list. It's unfortunate you're far from him - won't hurt to find a local rheumatologist who can coordinate your care with a specialist in Toronto.
Several of us on this forum have responded very well to Rituxan, to bring us into remission. Some of us, including me, even get it for maintenance therapy. I've had no noticeable side-effects from it. I also took Bactrim (to prevent pneumonia) and protonix to prevent heartburn from prednisone.
Anyhow, good luck and hope you get to see the doc soon!
Skempins, hi,I'm Deb. I get headaches,that I sometimes vomit from. Mine may be caused by my eye involvement,nevertheless I get them frequently. I had nose pain,in and out with mild bleeding,and my nose changed,but has not saddled. Yet! But I'm not treated,so... I watched it happen though and its very strange! So a different nose,than what I had but,it still works... Since you're treated,this may not happen to u.... Praise God for you're parents!!!!!!! U r very lucky u have this support!!!!! Best to u...... Deb.
Thanks, lots of good info on that site. My Rheumatologist is on the list. Fortunately, he's published lots of papers on Wegeners, I found out. unfortunately, I tried calling him and a rheumatologist I've seen in my town before yesterday and they're both off until next week.
Im definitely interested in Rituxan. Thanks again for the advice.
Thanks for the response, Deb. Yes I'm very lucky to have the parents I have. And two of my sisters are doctors. One in a hospital the other a naturopath. So I'm lucky to have good support. And I'm lucky for this forum! That's good to know that your nose didn't saddle. I also hope mine won't because I'm being treated. Right now it feels like a hand is pressing on it. All the best of luck to you. Thanks for the information.
Skempins,you're very welcome... The meds will get the inflammation down,and the nose pain should hopefully subside... You're in great hands,so hopefully u will not have to watch you're nose change before you're eyes! Wow,what a crazy sickness huh? Some things seem to defy logic.... Best to u,and you're family.... Deb.
Not just in my hands. Arms, legs, feet, back, neck, anyplace there are veins and nerves. Just that my hands were the worst pain and the most frequent/constant sometimes. Then with all those stabbing pains causing the muscles to twitch and cramp... the muscles were damaged too.
80 mg pred put an immediate halt to all of that. Reducing pred keeps causing muscle cramps... not so happy at that point either. The cramps get really bad and sometimes last for 10 minutes. Always at night when cortisol levels are lowest. Yuky sucky...
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