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Posted 1/19/2009 8:31 PM (GMT 0)
Ok, I go to the doctor this Wednesday to talk about options for treatment as I had to be taken off of imuran. Doctor said so far radiation, mephotrexate are my options. Input? Another doctor (my pulmologist) suggested clopine. Input on that? I'm taking ideas to the doctor.. lets get this rollin

What are questions I should ask?

What are some medications I can take?

smurf  

Posted 1/19/2009 10:29 PM (GMT 0)
they took me off of imuran and put me on cellcept. im not sure if this helps you.  i hope all goes well for u tho.

Posted 1/20/2009 3:55 AM (GMT 0)
I had an appt with my Rheumy today as well and he told me it looks like I will be coming of Imuran as well. He said my next step is Cellcept. I've been on Methotrexate and did not do well at all, actually felt worse. What is it that you are taking the Imuran for? I didn't see lupus in your DX line and I know they use this for many other diseases as well.

Melissa
Posted 1/20/2009 2:33 PM (GMT 0)
Oh hon, I have Wegener's Disease and Necrotizing Gramultous Inflamation. Inflamation, well you know muscles. Wegener's is another AutoImmune disease. This group has took me under their wing, and I find it very supportive. Also, as you notice, our medications happen to be very simalar treated. You guys are great here, btw :)
Posted 1/20/2009 5:04 PM (GMT 0)
I was on cellcept for 24 hrs. It made my blood pressure skyrocket, I got really bad heartburn and couldn't breathe. They took me off it, but that reaction is rare. Just be aware of any reactions to new meds.
Posted 1/20/2009 5:20 PM (GMT 0)
Cellcept was a miracle medication for me! No side effects to speak of (slight hair thinning) and it gave me back my brain! I was having fairly serious cognitive dysfunction, and now I can think clearly most of the time, complete sentences, and drive! However from what I've read, it probably doesn't apply to Wegener's Disease.
Posted 1/21/2009 9:00 AM (GMT 0)
soulnds like the drug ive been waitin for lol...i'll ask the doctor when i go in in nine hours
Posted 1/21/2009 10:26 PM (GMT 0)
Smury Shadow,

I hope your appt went well, I apologize, my memory is not what it used to be thanks for the reminder. I do recall now that you were looking for a support group and since your meds and such are so simular we did ask you to join us! How did your doctors appt go? Please give us an update when you feel upto it.

Hugs,
Melissa
Posted 10/21/2013 2:24 AM (GMT 0)
My mom has wegeners and they switched her to cellcept. She is doing well on it. She had a relapse last year and went through a chemo therapy to put it back in remission. So far kidney function is slowly increasing enough to keep her off dialysis.
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