| Author |
Message |
BW
Member
Username: Bwsacramento
Post Number: 1
Registered: 08-2011
| | Posted on Monday, August 22, 2011 - 01:20 pm: | 
|
I have had my kidney 10+ years. it never did settle in with a creatine reading form 2.5-3.5 and have felt great the whole time. I was on 2mg Pro Graf x2 and 250 mg Cell Cept x2 for ever. In April of 2010 I came down with a bad case of food poisoning and wicked diarrhea. Within 3 months I went from 195 to 140 lbs. my creatine has now been bouncing around 4.0-5.0 After a GI "specialist" ran every test in the book and spent 200k of Blue Shield's money he walked away scratching his head. I then went to UCSF transplant center and they switched me from cell cept to Sandimmune and like magic I was cured. After fine tuning the dosage from 50 mg x2 to 150 x 2 the diarrhea started again, so just to satisfy myself I started taking 250 mg x2 Cell Cept to see what happens and the flood gates flew open. So ever since this episode of food poisoning I can't tolerate Cell Cept or Sandimmune/cyclosporine. Has anybody had anything similar to this and what was the final result. Also id there anybody on Imuran and are there any GI concerns with it. Thanks in advance any help would be greatly appreciated. |
cruizin
Member
Username: Cruizin
Post Number: 159
Registered: 09-2010
| | Posted on Monday, August 22, 2011 - 10:00 pm: |
|
I haven't experienced anything like this.
Have you tried Myfortic?
Received kidney Mar 16, 2011, from my brother! 3/6 match
St. Joe's, Hamilton, ON
Peritoneal dialysis Nov '08 - Mar '11
Dx 1995 - believed to be chronic glomerulonephritis
Started CAPD Oct 2008 |
|
Jan3145
Member
Username: Jan3145
Post Number: 4
Registered: 05-2011
| | Posted on Tuesday, August 23, 2011 - 09:01 pm: |
|
I had the same thing, only I am a lung transplant on the same meds plus many more. They just changed my Cellcept and put me on Imuran. I developed C-diff while in the hospital and three times since at home, which is a bug looming around in the air, waiting for your immune system to be so stressed or low that you catch it. Once I got it from being over dosed on Levaquin too. Only a test can diagnose it from food posioning or other infections causing diarrhea. I lived in the bathroom for months before Vancomycin finally cleared it up These antirejection meds have a lot of GI side effects and my coordinator told me most txp pts live with constant diarrhea for a while.... but I can't believe most pts have it this bad!! It has been six months for me and it is now getting a little better but not much....I hate it! If you have a feeding tube, the liquid foods cause it also. I just lost my feeding tube and hope it gets better fast. Myfortic made me so sick.....N&V for days.... |
Hostess Rise'
Board Administrator
Username: Rise
Post Number: 16435
Registered: 05-2003
| | Posted on Thursday, August 25, 2011 - 12:53 pm: |
|
Ask your doctors about taking probiotics along with Cellcept. I would not take the probiotics at the same time of course just during the day away from the drugs. Without my probiotics (aka acidolphilus) I cannot tolerate Cellcept.
I hope you heal quickly
CF- dx at 2yrs. 2nd double lung tx-05
Debra Fertel MD- Jackson Memorial
Si Pham MD, Professor of Surgery
Anas Hadeh MD, Cleveland Clinic, Weston
My Photos on Transplant Friends
|
|
BW
Member
Username: Bwsacramento
Post Number: 2
Registered: 08-2011
| | Posted on Thursday, August 25, 2011 - 01:54 pm: |
|
Thanks, I believe that Myfortic is the same as Cell-Cept ?? I have spent hundreds of dollars on different probiotics with no improvement. I'm now spreading my 12 sandimmune pills out over the course of the day and making sure I don't take them on an empty stomach. (Today is day 2, I'll give it a week and let you know how this works) |
Joe Berry
Forum Leader
Username: Joe910
Post Number: 292
Registered: 08-2008
| | Posted on Tuesday, August 30, 2011 - 09:48 pm: |
|
I am a liver transplant patient who also has Ulcerative Colitis - it causes diarrhea when active. I take Cellcept and Prograf. Cellcept has had the reverse effect for me.
My UC had been in remission since transplant. Last October my doctor lowered my cellcept to 250 mg twice daily and my UC symptoms came back. I had just had 30 days of antibiotics so they checked for c-diff, but found that I did indeed have a UC flare up. I was put on probiotics and my cellcept went back to the previous dose. Doing fine now.
We all respond differently to the drugs we must take.
|
Organ4life
Member
Username: Organ4life
Post Number: 20
Registered: 06-2011
| | Posted on Wednesday, August 31, 2011 - 05:36 am: |
|
At my transplant center they usually switch patient from cellcept to myfortic when the diarrhea is too bad. Magnesium Oxyde can also cause a lot of diarrhea if taken in large doses. But yes C Diff remains a big problem. I have one patient where it came back 3-4 times in a few months period.
Transplant coordinator
www.organ-transplants.com |
|
Amy Tippins
Member
Username: Amytippins
Post Number: 81
Registered: 06-2009
| | Posted on Sunday, September 04, 2011 - 10:01 pm: |
|
Also, eat lots of foods with fiber. We are always taught fiber makes you go, but it will also "bind" you if we are short on fiber. Also, keep a dairy of EVERYTHING you put in your mouth and you should be able to figure out what foods make you have loose stools.
RockScar Love is where we celebrate the scars of new life! www.Rock Scar Love.com
A portion of sales credited to Transplant Buddies goes to COTA! |
|
Kris
Member
Username: Krislh
Post Number: 14
Registered: 11-2009
| | Posted on Tuesday, September 06, 2011 - 05:15 pm: |
|
I assume if you have seen a GI doctor that they have checked for CMV. I had the same situation while on cellcept and after several months was diagnosed with CMV. Every time I would go back on cellcept same results, I was finally switched to imuran with no problems after about a year on it. Hope they figure out the problem, I know how frustrating it is. Good luck. 
Kris
Pancreas
Sept 2006
Indiana University Medical Center |
|
Carl
Member
Username: Carlbullen
Post Number: 3
Registered: 01-2012
| | Posted on Monday, January 02, 2012 - 05:44 pm: |
|
Backing up what Hostess Rise said, probiotics can apparently really help CellCept diarrhea:
http://www.northshorenephrology.com/blog.php?index=11&id=5543899459926798445 |
jeepers
Member
Username: Jeepers
Post Number: 2
Registered: 12-2011
| | Posted on Friday, January 06, 2012 - 09:20 am: |
|
I was unable to tolerate cellcept so I was switched to Myfortic which at a dose of 720mg 2/day gave me severe diarrhea as well as lowered my WBC to a point where I was taken off it completely, I did not want to stay on prednisone for life, so I offered to try myfortic again at a childs dose of 180mg 2/day. This has gone well so far.
I was only 90 lbs at my heart transplant 4 months ago and dropped to 85 llbs. I am a 58 yr old W. I thought I had a bug at first but will never know if it was the myfortic or a bug.
My clinic advises against probiotics.I will have to ask why since I still get some wicked belly cramps at times.
The trembling that my body feels is it prograf myfortic or prednisone (or all three?) |
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17733
Registered: 05-2003
| | Posted on Monday, June 10, 2013 - 04:52 pm: |
|
New finding on Cellcept
http://www.transplantfriends.com/forum/topics/cellcept-and-vitamin-c-drug-interaction
|
Hostess Risé
Board Administrator
Username: Rise
Post Number: 17738
Registered: 05-2003
| | Posted on Tuesday, June 11, 2013 - 01:04 pm: |
|
Turns out that a pharmacist from Genentech said he found no interaction with Cellcept and vitamin C.
|
Michellesb1
Member
Username: Michellesb1
Post Number: 2
Registered: 07-2013
| | Posted on Thursday, July 11, 2013 - 06:09 pm: |
|
I've just gone back onto cellcept and its given me diarrhoea! I was on it for 10 yrs however stopped taking as switched to azathioprine inc. prograf as was trying for a baby. I'm comfortable and reassured with cellcept but I constantly feel like I might need the toilet and its hard adjusting again. I think it's always had that effect on me too!
|
DAP1122
Forum Leader
Username: Dap1122
Post Number: 3458
Registered: 05-2008
| | Posted on Sunday, July 14, 2013 - 07:06 am: |
|
Michelle, ask your team to check your Cellcept levels. If too high, you can have that issue.
Be well - DAP
|
Michellesb1
Member
Username: Michellesb1
Post Number: 6
Registered: 07-2013
| | Posted on Sunday, July 14, 2013 - 11:46 am: |
|
Thank you! I have a check up tomorrow |
