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SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/19/2009 1:31 PM (GMT -7)   
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  
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndroe, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux


jojo711
Regular Member


Date Joined Aug 2008
Total Posts : 46
   Posted 1/19/2009 3:29 PM (GMT -7)   
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.

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/19/2009 8:55 PM (GMT -7)   
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
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/20/2009 7:33 AM (GMT -7)   
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 :)
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndroe, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux


kpeachy75
Regular Member


Date Joined Sep 2005
Total Posts : 250
   Posted 1/20/2009 10:04 AM (GMT -7)   
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.
Take care, peachy
 
Diagnosed with lupus in May 2005. Daily Medications: Prednisone, 5 mg; Imuran, 50mg 2x a day; Warfarin, 5 mg / day; Zoloft, 100 mg / day; Plaquanil, 200 mg 2x a day; Nexium, 20 mg / day; Tramadol, 50 mg 2x a day (as needed) and Tylenol. Supplements: 1500mg calcium; 2000 IU of Vitamin D; 400mg magnesium; Centrum Silver (and I am 30!)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 1/20/2009 10:20 AM (GMT -7)   
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.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 6mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex

Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

"Life is far too important to be taken seriously." –Oscar Wilde, 1982

 


SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 1/21/2009 2:00 AM (GMT -7)   
soulnds like the drug ive been waitin for lol...i'll ask the doctor when i go in in nine hours
 
Smurfy Shadow
 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux
 
Medications: Imuran, Prednisone, Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 1/21/2009 3:26 PM (GMT -7)   
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
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


Bk1mom
New Member


Date Joined Oct 2013
Total Posts : 3
   Posted 10/20/2013 7:24 PM (GMT -7)   
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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