Transplant medication side effects

[Brightsky69]

Ok…I am having a bad few days with side effects. Well…only one side effect, diarrhea. Blah! 
Usually, I have diarrhea here and there minus the cramps. But since Sunday I have been getting up at least twice during the night with the big D. and cramping to go along with it. 
I’ve been eating probiotics yogurt and taking pro probiotics capsules. Probiotics have worked in the past. My doc’s seem to think it’s caused by the prograf or the myfortic. Any ideas for some relief? Oh and i am drinking lots of water.

[monrein]

How about upping your fibre? 

[Chris]

From my experience, the myfortic.
 
Have you tried immodium? I was given the ok to use that on a daily basis as needed. Eventually I had to be taken off CellCept and Myfortic because I was told I was one of the few who could not tolerate it after having a transplant so long. The doctor said this usually happens in new recipeints though. Something to keep in touch about concern with transplant center.

[Brightsky69]

Thank you!!   
I did bump up my fiber and that seems to have helped a lot. No more cramps 

[monrein]

 

[tyefly]

I am still a zombie  and stuperfied ( sp )  while taking all of these drugs.... seems like its getting worst....  no  energy  and still feeling bad all day long....  bowels have changed but no diarrhea but very acidic  and painfull.... seems like I have to go every 10 minutes....   They are decreasing my prograff now to get my level down between 5-10... so I hope this helps....   the biggest problem that seems to be happening now is the pain in my feet..... the neurophathy is really bad.... use to be just tingling..... but now it big time burning...like my feet are on fire.... all day long....its getting so I can wear shoes or shocks....  I dont understand why this is happening.... When I went in to see the doc today  I had to get real.... tell them how I feel.. I tend to make thing look better than they are.... why ....cause I want to do well....  and I can deal with a little discomfort....   Nope not now.... I am not like this....its getting so bad that I am thinking about stopping all meds......  really   whats the worst that can happen..... loose a kidney and go back on dialysis.... I felt way better on dialysis..... I dont like these drugs.....  The doctor said that some people just dont thrive after transplant....  while others feel the best they have every felt....   Am I starting to not THRIVE.....  WHAT DOES THIS MEAN......  Doc said we need to do a biopsy maybe  that will shed some light....  he said maybe in a couple of weeks...   
and yes I asked   can I go swimming .... answer    NO...     Jacuzzi   NO      More pain pills......  no answer....LOL

I will beat this ..... I will win.....and I will fight to feel better....

I hope that Brightsky69 gets past those cramps and diarrhea... as with all of this    its not fun...... 
      lets get feeling better Brightsky69..... we can do it......

[RightSide]

It took me an entire month to get over these gastrointestinal side effects. And yes, fiber was the best thng.  I just kept increasng the fiber dose till my gut calmed down.

But I never quite got over the prednisone jitters.
Even now, after 9 months, I still experience bouts of a combination of nervousness and depression.  That usually goes away within 7 hours after taking the Prednisone.

[Brightsky69]

Wow…I thought I had it bad with the diarrhea and cramps. Tyefly and RightSide….I feel for you. When I was on higher doses of prednisone, right after my transplant, I was ready to bite people’s heads off.  Even to this day…almost a year after transplant, I still find most people really annoying and unnecessary.   
Now I am on 5mg a day….not too bad. Tyefly…I am so sorry you’re having so much trouble with the drugs. I know it isn’t easy and hopefully soon your doctors will find the right med combination for you to easy you out of these side effects.    I wish your doctors were more proactive. If I present anything to my doctors they jump on it and want to test me to find out what’s going on. Although, I think my doctors have calmed down a bit with their panic concerning something going wrong since my transplant is over 11 months old.

[Katonsdad]

Man , to read these post takes me back to my transplant un 1999 .  I was on CellCept . Prograf and Prednizone.
All was going great and the stopped the Cell Cept and the side effects hit really hard.   I was in really bad shape.
My wife took me to the transplant center and I could barely walk inti the center. I was weak . so very weak.
I could barely stay away from the bathroom for 30 minutes . I really thought I was going to leave this world .
My wife and I had a 1 yr=ear old baby at that time (2002)   I was scared .
Git to the doctors . they admitted me to the hospital and found I had CMV and a bad case. Took lots of
meds to get me back .    If the problems persist , you should be checked for CMV/

[ToddB0130]

Thanks to all of the posters on this thread for 'keeping it real' .... I am pre-D,  but it's important to read about this and the side effects of transplantion meds.   I'm sorry that some of you have had issues,  but I truly hope overall your quality of life has improve.  That's what I hope for all of us who are travelling down this road together.

[Brightsky69]

I have noticed that drinking lots and lots of fluid really helped with the diarrhea. I was getting dehydrated from the diarrhea and drinking fluids helped to control the diarrhea. weird

[willowtreewren]

So far Carl's side effects have been minor. He has the moon face (I call it chipmunk cheeks!) from the Prednisone. He calls it "pregnant zone). And he is growing a phenomenal amount of hair...except on top of his bald head. His cholesterol is elevated. AND he has to go to the dermatologist every three months to have yet another (or more) precancerous skin growths removed. AND he gets colds like there is no tomorrow. He NEVER (well almost never) got sick before and that is with working with kids and all their germs.

His Prednisone is down to 7.5mg.

These are annoying, but we have a life now.

If the transplant fails (doesn't look like that will happen in the near future, but you never know), we will go back to the dialysis routine. In the meantime, we are fully enjoying the time and freedom we have.

Aleta

[Brightsky69]

Ok...I am about over my creatinine level.  It loves to rise.    My last labs say it was 2.4 not good.    But yet every time they put me in the hospital they give me just IV fluids  my creatinine drops to my normal level of 1.9. I know it's the diarrhea dehydrating me. I drink like a fish mostly water plus some Gatorade but I guess that is not enough. So over the past couple of days I’ve added Vitamin Water XXX.
I had my labs done again this morning and I swear they better be good.    I haven’t heard anything yet.
My doctor said if the creatinine hasn’t come down from 2.4 they are thinking about starting my on IV steroids on an outpatient basis. Ugh!!! Well…whatever cause I am keeping this kidney no matter what!

[ToddB0130]

Absolutely !! Do whatever it takes to keep that bean !  Your doctor wants that for you as well,  so they're going to work with you HARD to make it happen.   Best of luck.

[Brightsky69]

My creatinine dropped to 2.2, much better than 2.4 and all I did was add some Vitamin Water XXX to the mix.   
I will keep on drinking!!!

[rsudock]

From my experience, the myfortic.
 
Have you tried immodium? I was given the ok to use that on a daily basis as needed. Eventually I had to be taken off CellCept and Myfortic because I was told I was one of the few who could not tolerate it after having a transplant so long. The doctor said this usually happens in new recipeints though. Something to keep in touch about concern with transplant center.

i had to go off myfortic eventually too...made me too nauseas all the time...(with first transplant)

[Brightsky69]

Immodium did nothing for me. CellCept did the same thing to me....diarrhea plus black stool. They put me thru a cholangioscopy to fine nothing wrong. It was weird because I was on Cellcept for years and it only started to give me trouble as my 1st transplant started to give out.

[Amiel]

Before my transplant, I was constipated because of the iron supplements. After transpalnt myfortic gave me gastro problems. My nephro changed it to celcept and it went away in a couple of days.

[RichardMEL]

I feel very lucky that I have no bad reaction to Cellcept and I seem to tolerate Cyclosporin OK at 75mg twice/daily(they are looking to lower to 50) and preds at 5mg (higher doses made me a bit over the top...). Overall I feel like I am doing OK with the meds. YAY!

[edersham]

Brightsky 69

I have followed your reports and have always hydrated properly before a blood draw and for 20 months my creatinine ranged from 1.5-1.9. Got surprised a couple of weeks ago when my internal medicine doctor did a blood draw which I thought was just for cholesterol and triglicerides but surprise she included creatinine which came back at 2.2.  I had 10 days of stress untill I could repeat the test properly hydrated (travel and work caused the delay) and the results came back today at 1.7. Lesson learned. Treat every day like your having a creatinine test tomorrow. I know, I should know better having hung out here for two years.

Ed

I

[Brightsky69]

I am about over watery stool  I drink tons of water and juice, Gateraid whatever (no soda). I drink so much I make my electrolytes off kilter. Lordy!!
Today I had an yummy sandwich and ate the whole thing and not 30 minutes later I started to feel crampy. So far no diarrhea...but it may come in another few hours.
I am leaving for texas tomorrow. It's a long flight with a connection in Houston. Like I really want to be stuck on a plane with diarrhea.
I hate this but...it's still WAY better than dialysis.