Cellcept sucks

[kidney4traci]

I am having to take 250 mg of cellcept every morning an night for 30 days prior to surgery.  I have been on it now for just over 3 weeks, and I am feeling like do do.  My stomach is upset always and i have zero energy.  The other day I had to go in for my stress test, and I told the nurse prior that I wasn't feeling good, and that I had already gotten sick that morning.  Well, half way into the test I knew I was going to get sick, and she had to go find a container!  I TOLD her in advance, you think she would have prepared... but no.  So I threw up there and pretty much can't make dinners cause the smell makes me sick.  My mom saw that cellist gets cleared by the kidneys, so the levels get higher in dialysis pts.  Anyone else experience these effects?  Does it get better after transplant?




EDITED:Moved to general discussion - Sluff/Admin

[Sluff]

Sorry to hear that you and cellcept are not getting along well, as for the Nurse, lets just say they just never really listen to the patient, serves her right and I hope she had to clean it up. Hope you feel better soon.

[boxman55]

not sure what that is for...Boxman

[willieandwinnie]

kidney4traci, I feel so bad for you. Len was on Cellcept after transplant and it caused just no end to GI problems. They finally stopped his completely but they weren't too happy about it. There is Myfortic or something like that, it is a coated tablet and some have had better luck with it. You need to tell the doctors about the problems you hare having with it so they can switch you to something else. I hope you get things resolved and start feeling better soon.  

boxman, the cellcept is used to supress the immune system prior to transplant. 

[Chris]

Not sure why your own CellCept prior to transplant, but I know they are starting to use it for patients with Lupus. As stated by willieandwinnie, some people can not tolerate CellCept and are switched to another medication. The one that willieandwinnie is talking about that is given to people who can not tolerate CellCept after having a transplant is called myfortic® (mycophenolic acid) delayed-release tablet – Adjunctive antirejection medication for people who have received a renal transplant. myfortic was approved in 2004. For more information about myfortic. www.myfortic.com

From the above link:
Treatment Options:
myfortic® and CellCept®

myfortic and CellCept contain the same active ingredient and work equally well to help keep your body from rejecting your new kidney. The difference is a protective coating on every myfortic tablet. It's called an enteric coating and it's only available on myfortic. This section explains the value of the enteric coating. It also has information about myfortic and CellCept that you may want to discuss with your doctor or transplant team.


However, since I do not know why your on CellCept, this may or may not be your answer, but something to ask your doctor about or transplant center.

250 mg of CellCept is the lowest dose form of the medication, so if you have a transplant and can not tolerate it now, let your healthcare team know about it now.

Good Luck

[st789]

Ahh.. those hard to swallow pills.  Sweet candies make those medications easy to swallow.  Get well and have a success transplant.

[kidney4traci]

Thanks Chris for the great info. I currently take 4-250 mg 2xs a day. I do have some antibodies to some of the donors cells so they are trying to suppress my immne systom prior to transplant. I did get the go ahead from dr today to lowe dose to 500 mg so we will see if that helps. He also said to eat something when I take it this time which is contrary to the instructions. Oh well, another indication of practcing medicine. All your input is very appreciated and love the quick responses.

[Wenchie58]

I never took cellcept, I take Myfortic and haven't had any stomach issues other than some heart burn that is handled with a zantac.  I was taking 720 mg twice a day but have been reduced to 360 mg twice a day.  Now is the time to switch if it's needed, you are NOT going to want to deal with an upset stomach after surgery.
Best of luck!

[okarol]

Jenna takes 2 ea. 500 mg CellCept in the morning and 2 more at night. She's had no side effects, but when she stared it the also prescribed Prilosec to help with the common side effect of nausea.

I just read this:
Antacids such as Maalox and Mylanta decrease your body's absorption of CellCept. You should never take antacids at the same time as CellCept. You will be prescribed other medicines to protect your stomach, such as Prilosec or Prevacid, while on CellCept.

That's good to know. I found it here: http://cpmcnet.columbia.edu/dept/cs/pat/kidneypancreastx/meds_mycophenolate.html

[meadowlandsnj]

I am having to take 250 mg of cellcept every morning an night for 30 days prior to surgery.  I have been on it now for just over 3 weeks, and I am feeling like do do.  My stomach is upset always and i have zero energy.  The other day I had to go in for my stress test, and I told the nurse prior that I wasn't feeling good, and that I had already gotten sick that morning.  Well, half way into the test I knew I was going to get sick, and she had to go find a container!  I TOLD her in advance, you think she would have prepared... but no.  So I threw up there and pretty much can't make dinners cause the smell makes me sick.  My mom saw that cellist gets cleared by the kidneys, so the levels get higher in dialysis pts.  Anyone else experience these effects?  Does it get better after transplant?




EDITED:Moved to general discussion - Sluff/Admin


I remember taking it ad having really bad effects like vomiting and diarrhea.  I was told to take it with small amounts of food and it did get better over a weeks time. 

Donna

[kellyt]

I take the same dosage as you, Traci.  Four in the a.m. and four in the p.m.  I was having GI problems early on (once returning home), but it was mainly stomach cramping and such.  It also caused me to have multiple BM's a day.  But it calmed down in just a few weeks.  Now I'm more regular than I've been in over a year!

I am also on Pepcid b.i.d.  See if maybe they can add that to your regimen. 

Definitely get your stomach and bowel issues under control before surgery.  However, I would be more concerned with constipation after surgery than loose and frequent stools.

Less than two weeks to go!!!      

[cambonesegirl]

kidney4traci, do you take your Cellcept with food? I eat 15 to 20 minutes prior to taking my meds and it helps.

[Romona]

  All the drugs are a drag!

[petey]

Not sure why your own CellCept prior to transplant, but I know they are starting to use it for patients with Lupus. As stated by willieandwinnie, some people can not tolerate CellCept and are switched to another medication.

When it was a pretty good "go" that I could be Marvin's living donor, they put him on Cellcept and Prograf and Prednisone to get his body "used" to the anti-rejection meds (about a month before the actual surgery took place).  However, Marvin never had any side effects with Cellcept (he continued to take it for another three years -- the life of his transplant), though he did take Previcid, too.

Also, 30 days before the surgery, I donated a pint of blood and they gave it "direct donation" to Marvin to make sure our blood didn't "fight."  Two weeks before the surgery, we did another pint.  I guess when they know there's almost a "sure" living donor, they have time to prepare (at least, that's what they told us). 

[kidney4traci]

that's interesting about the blood donation, they haven't mentioned that.  The Dr told me to stop meds today for 12 hours.  I feel much better already.  Was able to eat lunch and food smell didn't bother me, actually smelled good!!  Hope it goes by fast, seems after transplant it should be better as function improves.  The Dr. also said to check in Monday to let them know how I am feeling. They seem on top of things so far.

[Chris]

Jenna takes 2 ea. 500 mg CellCept in the morning and 2 more at night. She's had no side effects, but when she stared it the also prescribed Prilosec to help with the common side effect of nausea.

I just read this:
Antacids such as Maalox and Mylanta decrease your body's absorption of CellCept. You should never take antacids at the same time as CellCept. You will be prescribed other medicines to protect your stomach, such as Prilosec or Prevacid, while on CellCept.

That's good to know. I found it here: http://cpmcnet.columbia.edu/dept/cs/pat/kidneypancreastx/meds_mycophenolate.html

Hmm something to ask doctor.
I was given Pepcid, but insurance doesn't want to pay for that one and was switched to Ranitidine (Zantac) 150 mg twice a day. But I was never told to wait to take the med. I take all my meds at once. I hope to remember this when I see transplant center next month.

[AlasdairUK]

Hiya,

I'm currently on 500mg twice a day of Cellcept, without any problems. Although, if I have lots of dairy it seems to cause an issue - I had a couple of chocolate milkshakes when I got home. Any issues, obviously let your doctor know and they can alter or try different options. At the end of the day, all the meds are poisons in some respect as they stop the body doing what it wants to do. The upside is that you are less likely to reject the kidney. I also take Sirolimus 2mg daily, I stopped taking Prednisone after 6 months

When I had my first transplant they gave me blood from my donor. This served two purposes - to see if our blood would "fight" and to increase my HB levels. It is not something I thought they did anymore as they have better anti-rejection drugs and are happy to give higher or more constant doses of EPO.

[kellyt]

I take my Prograf and my CellCept at the same time (6 a.m. and 6 p.m.) and the Prograf is supposed to be taken on an empty stomach.  I was never told I had to eat with my CellCept (or before or after taking it).  Therefore, it gets taken on an empty stomach and I have no problems.  I usually eat 1 hr after taking it in the p.m. and maybe 2 hrs after taking it in the a.m.

[Jill D.]

Traci - I take 750mg of Cellcept in the morning and 750mg at night. I also take a prescription strength antacid. I don't get stomach cramps, but when I have to go, I have to go NOW!    The instructions say to avoid eating 1 hour before and 2 hours after taking, but that is hard for me to do especially in the morning since I take my meds at 8:00am and 8:00pm. Sounds like it is getting better for you, but you might want to check on taking something that will help settle your stomach.

[kidney4traci]

Love the new photo Jill!  I am feeling better by taking only 500 mg at a time, every 6 hours vs 1000 every 12.  The Dr did say I could take peptcid ac, but since I have changed the dose, I haven't needed it as much.  And I can eat again, so that is better too.  Just not fun being sick!!  Thanks for the feedback.

[Chris]

I would still take the pepcid anyway for what the med can do to the stomach. I haven't seen any tx patient without some sort of antacid in either type of drug used. Don't want you to develop any other problems.

[monrein]

Here's more proof that I'm related or at least descended from cockroaches.  In all my time on dialysis and 23 years of transplant I have never taken an antacid.  Never had any indigestion much either.  I don't however eat much, if any deep fried stuff, and if I do then I might get a bit of heartburn.

[kidney4traci]

  COCKROACHES???  Where do you get this stuff!!  But I do agree, living a right life, and eating right, does promote health.

[monrein]

You know...cockroaches...possibly the only creature likely to crawl away after a nuclear attack...cockroaches and some of us dialysis patients, toughest creatures on the planet.  Where do I get this stuff, these comparisons?  Why, I make them up of course.   

[kidney4traci]

YOU ARE NOT A COCKROACH!
Last Tuesday dialysis today!!!!!!!!!!!!!! One week to a good kidney!!