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Author Topic: NEW CELLCEPT WARNING!!!!  (Read 17345 times)
circleNthedrain
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« Reply #25 on: August 06, 2008, 12:43:41 AM »

Hey Angelface, so sorry to hear of your vision problems.  I took cellcept for a couple of years to try and slow the deterioration of my transplanted kidney.  After a couple of years on cellcept, I developed severe diarrhea, only it took over a month of doc visits to diagnose cellcept as the cause...WTF??  I also had severe vision changes, lost most of the vision in my left eye overnight.  Had endless eyetests done with no answers.  This forum is the first place that makes the connection between CC and vision changes.  I also have many of the symptoms described in okarols report on PML.  Severe weakness in my legs, speech difficulty, and very limited use of my hands.  Is this the result of cellcept use??  I don't think I will ever know, and it really doesn't matter now.  As anybody knows who has embarked on this transplant journey, you just gotta role the dice!
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1979 Diagnosed with kidney failure
1979 Right arm fistula
1979 Start hemodialysis
1980 CAPD catheter
1980 Start CAPD
1989 Cadaveric kidney transplant
1995 2nd cadaveric  kidney transplant
2007 Start hemodialysis
2010 Still drawin' wind
Chris
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« Reply #26 on: August 06, 2008, 09:03:48 AM »

After a couple of years on cellcept, I developed severe diarrhea, only it took over a month of doc visits to diagnose cellcept as the cause...WTF?? 

What an idiot doctor. CellCept is a given for Diarrhea. If he prescribed it and didn't know that, what a dumb :sir ken; When they switch my dose up at times when I am sick (they stop my Prograf), it is always going to happenwith me. Or if you eat after taking the med or shortly before.
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Diabetes -  age 7

Neuropathy in legs age 10

Eye impairments and blindness in one eye began in 95, major one during visit to the Indy 500 race of that year
   -glaucoma and surgery for that
     -cataract surgery twice on same eye (2000 - 2002). another one growing in good eye
     - vitrectomy in good eye post tx November 2003, totally blind for 4 months due to complications with meds and infection

Diagnosed with ESRD June 29, 1999
1st Dialysis - July 4, 1999
Last Dialysis - December 2, 2000

Kidney and Pancreas Transplant - December 3, 2000

Cataract Surgery on good eye - June 24, 2009
Knee Surgery 2010
2011/2012 in process of getting a guide dog
Guide Dog Training begins July 2, 2012 in NY
Guide Dog by end of July 2012
Next eye surgery late 2012 or 2013 if I feel like it
Home with Guide dog - July 27, 2012
Knee Surgery #2 - Oct 15, 2012
Eye Surgery - Nov 2012
Lifes Adventures -  Priceless

No two day's are the same, are they?
angelface2008
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« Reply #27 on: August 06, 2008, 06:05:21 PM »

I have had lupus for a very long time. and since my switch from cellcept to immuran my kidney again is acting up.my doctor thinkgs it was a very bad idea to make the switch of the meds, but he is not in my shoes. my doctor suggests a kidney biopsy to see what the heck is going on in there (my body). i am on prednisone, immuran, cozaar,lipitor,actonal, diovan, and other supplements. i hope i don't have to go thru this S__T!! again. i want to give up on my kidneys sometimes, but other times i hang in there by a thread (a very skinny thread). this immuran better kick in soon or my prednisone will go up and i will end up needing cytoxin therapy again. and to make matters worse school statrs soon (Aug. 23) i don't want to be eating the stupid 20mg of prednisone. i hate the way i feel and honestly look!! take care guys!!
love angelface
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Sugarlump
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10 years on and off dialysis

« Reply #28 on: August 08, 2008, 08:22:28 AM »

Having just read this thread i'm now really worried ... had transplant feb 08 episode of CMV and mild rejection April ...then acute rejection last week. Now on cellcept 750mg a day??? My creatinine is stuck in 600's and feeling pretty ruff. I'm finding emotional turmoil of transplant hard to handle ...up and down like yo-yo ... drugs don't help either  :thumbdown;
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10 years of half a life
3 years HD 1st transplant Feb 08 failed after 3 months
Back to HD 2nd transplant Dec 10 failed after 11 months
Difficult times with a femoral line and catching MSSA (Thank you Plymouth Hospital)
Back on HD (not easy to do that third time around)
Fighting hard (two years on) to do home HD ... watch this space!
Oh and I am am getting married 1/08/15 to my wonderful partner Drew!!!
The power of optimism over common sense :)
MelissaJean
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it's better to find peace than understanding

« Reply #29 on: August 08, 2008, 08:44:55 PM »

Having just read this thread i'm now really worried ... had transplant feb 08 episode of CMV and mild rejection April ...then acute rejection last week. Now on cellcept 750mg a day??? My creatinine is stuck in 600's and feeling pretty ruff. I'm finding emotional turmoil of transplant hard to handle ...up and down like yo-yo ... drugs don't help either  :thumbdown;


I have been on 1000mg/day of cellcept for 4 years now (received a double lung transplant in '01) and I talked to my doctors today.  They said no worries because the study was done on a small focus group.  If you are really concerned I would definitely talk to your doctor to see what they have to say.   

I agree the turmoils of post transplant are super rough.  After getting my transplant I encountered a lot of new problems (and still do.. including kidney failure), and sometimes I wish I would go back to having my old disease because I knew how to deal with it.  Hope the emotional turmoil gets better.. don't know how long you have had your transplant but it gets better!   :cuddle;
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~Melissa~

"just run with me through rows of speeding cars"

- Born with Cystic Fibrosis
- Received double lung transplant 11/9/2001
- Complications from transplant:  Diabetes, Kidney Failure
- Started dialysis 6/6/06
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