Transplant Recipients: What side effects do you have from transplant meds?

[okarol]

I am curious what people experiences are. Jenna has no effects at all except for a slight tremor in her left hand (it's pretty hard to spot but they check it each time and say it's due to the Prograf.)
She had a lot greater difficulty remaining stable on dialysis and all the meds required. She's off blood pressure meds for the first time in 6 years.

I know transplants are not easy to get, nor is there any guarantee what your outcome will be. Immunosuppressants are getting better and better, and more fine tuned than in the past.

I think you need to weigh the risks and benefits of a transplant against the status of your dialysis and what those long term affects can be as well.

It would be sad if someone decided against getting a transplant based on what the meds are like, because of fear or lack of information.

In Jenna's case she's doing well.

[Roxy]

Hair growth. BUT, I'm happy about it because I lost a lot of hair during my short time on dialysis. It just starts getting costly to constantly remove all the unwanted hair everywhere else. No big deal for me though. I have high blood pressure now and slightly high cholesterol. I think once I exercise more I can bring the cholesterol down, I hope. Also I'm on Cyclosporin and Cellcept and I think the side effects are due to the cyclosporin. Maybe we should all mention which anti-rejection drugs we're on too, so people can tell which medication has what side effect?  Overall, I'm still happy I had the transplant 

[livecam]

I'm on a steroid free protocol with my transplant meds being Prograf and Cellcept.  Honestly at six years now I believe I have no side effects at all.

[vandie]

I am only 5 weeks post transplant.
I am on Cellcept, Prograf and Prednisone.  I have tremors; sometimes noticeable.  Doctor says it's the Prograf.
The prednisone fusses with my sleep.  I will always be on it because of the PRA issues, but we are hoping to get it down to a tolerable dose before too long.  I am on one blood pressure medication, down from 3 pre transplant. 

All in all, these few side effects are a small price to pay for my fabulous gift.

[angela515]

Hair growth. BUT, I'm happy about it because I lost a lot of hair during my short time on dialysis. It just starts getting costly to constantly remove all the unwanted hair everywhere else. No big deal for me though. I have high blood pressure now and slightly high cholesterol. I think once I exercise more I can bring the cholesterol down, I hope. Also I'm on Cyclosporin and Cellcept and I think the side effects are due to the cyclosporin. Maybe we should all mention which anti-rejection drugs we're on too, so people can tell which medication has what side effect?  Overall, I'm still happy I had the transplant 

Yes, the hair growth is from the Cyclosporin. I am not on it now, but I was with my 1st transplant and had that side effect.

[angela515]

I am on a steroid-free protocol also... I am on Prograf and Rapamune. No side effects.

[okarol]

Jenna's anti-rejection meds are Prograf and Cellcept. She is on a steroid free protocol.

The few other meds are vitamins and minerals.

[Ginger]

I am on cellcept, cyclosporine and 2.5mg prednisone. Except for needing to shave the excess hair almost every other day, no other side effects from meds.  I am only on the prednisone because I am participating in a research study as that is part of the protocol.

[livecam]

Except for needing to shave the excess hair almost every other day, no other side effects from meds. 

What?  Hair?  Where's mine?  Did I get some bad Prograf?

[okarol]

Except for needing to shave the excess hair almost every other day, no other side effects from meds. 

What?  Hair?  Where's mine?  Did I get some bad Prograf?

Unless the doctor switches you to Cyclosporin, the only other option is Rogaine. 

[livecam]

I heard once that a really bad sunburn on the head will sometimes do it.  As the burn heals new blood vessels form and magic happens.  With that said I'm headed outdoors with a magnifiying glass.  We'll put that theory to the test.

[Romona]

I did have probems with my white count dropping too low while on Valcyte. That was cut about 6 months after my transplant.
I'm steroid free as well.
I'm on prograf, I have the slight temors, and at times vivid dreams. No side effects from Septra. Baby Aspirin to prevent blood clots in the new kidney.
One blood pressure med, very low dose.
Magnesium and Phosphorus. Other drugs for parathyroid.

The side effects are nothing compared to feeling much better.  

[angela515]

I did have probems with my white count dropping too low while on Valcyte. That was cut about 6 months after my transplant.
I'm steroid free as well.
I'm on prograf, I have the slight temors, and at times vivid dreams. No side effects from Septra. Baby Aspirin to prevent blood clots in the new kidney.
One blood pressure med, very low dose.
Magnesium and Phosphorus. Other drugs for parathyroid.

The side effects are nothing compared to feeling much better.  

Your only on 1 immunosupressive med?
Vivid dreams? I didn't even know that was a side effect, interesting.. what exactly is a vivid dream?

[Romona]

Your only on 1 immunosupressive med?
Vivid dreams? I didn't even know that was a side effect, interesting.. what exactly is a vivid dream?

University of Pittsburgh (where I had the transplant) did a study and followed patients for 1 year on Prograf only. The study ended around the same time as my transplant. The success rate was very good.  Most of the patients at Transplant Clinic right after my transplant were only on Prograf.

The vivid dreams are very colorful. It is like watching a movie. I unfortunately have the horror movie type, I wake up with my heart pounding. I dream of death and violence. A patient that I met has very happy and beautiful dreams. It seems to happen if the Prograf level gets on the high side. 





EDITED:  Fixed quote error - Goofynina/Admin.

[angela515]

That is very intresting, the vivid dreams thing... I wish I had them... not the horror ones though!! I hope you can have good dreams soon that are vivid!

[Jill D.]

I'm on Cellcept, prograf and 5mg prednisone. No noticable side effects, except I'm always thirsty which helps me pump the water. Gotta watch what I eat with the prednisone because it's easy to gain weight.

[st789]

I am on 100 mg of Neoral, 250mg of Cellcept, 5 mg of Prenidsone and 100 mg of Epivir for my liver.  Also, very thirsty through out the day.  Must drink at least 1 liter of water daily.  Do doctors recommend some to take vitamins and mineral?

[okarol]

I am on 100 mg of Neoral, 250mg of Cellcept, 5 mg of Prenidsone and 100 mg of Epivir for my liver.  Also, very thirsty through out the day.  Must drink at least 1 liter of water daily.  Do doctors recommend some to take vitamins and mineral?

Jenna has continued the nutritional supplements that were started after her transplant, with the exception of Magnesium, which was discontinued. She takes Ferrous Sulfate 325 mg X 3 per day, Folic Acid 1 mg 1 X per day, a multi-vitamin, Vitamin D 400 units 2 X per day, Calcium carbonate 500 mg 2 X per day, and also a baby aspirin.

[Roxy]

For me they just go by my labs and decide the supplements. My magnesium is fine so I don't need anything for that. I do take a multi-vitamin that I think has added folic acid and some other stuff and then I take iron as well.

[angela515]

and also a baby aspirin.

Why aspirin? People are told not to take Aspirin or Ibuprofen after a transplant... so I'm curious.

[okarol]

and also a baby aspirin.

Why aspirin? People are told not to take Aspirin or Ibuprofen after a transplant... so I'm curious.

The baby aspirin is to prevent blood clots, according to Jenna's prescription. The dosage is very low - baby aspirin (80 mg of aspirin)

On the internet it says: Baby aspirin is used to decrease blood clotting and to prevent blood clots from forming in the new organ's artery and veins.

[Jill D.]

I am on 100 mg of Neoral, 250mg of Cellcept, 5 mg of Prenidsone and 100 mg of Epivir for my liver.  Also, very thirsty through out the day.  Must drink at least 1 liter of water daily.  Do doctors recommend some to take vitamins and mineral?

I take a multi-vitamin, iron, and just recently started megadoses of Vitamin D. My doctor put me on Vitamin D because there has been a lot of research recently that the general population does not get enough Vitamin D, plus it appears to be very beneficial to kidney patients. Anyone else been told that?

[paddbear0000]

Is there a substitution available for Prograf? That's the drug that causes the tremors, right? Tremors would pretty much run my career as a graphic designer (it requires very fine movements of the computer mouse)!

[Jill D.]

I'm on Prograf - I don't have problems with tremors or shakiness, but it is a common side effect.

[Roxy]

I might be wrong but I think most people either take Prograf or Cellcept and it is a side effect of both. However, just like any other side effect it doesn't show up in everybody, I don't have it either.