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

[Chris]

My transplant center gave me an information packet that llist what potential side effects can occur from each time of immunosupressant used. I wasn't caught off guard, Wish I had the hair loss that I have read about in another transplant forum, wouldn't have to shave so much

[Krisna]

Well, I don't have a transplant right now but I've had four of them so let's see if I can remember all that happened from the meds.

Imuran (which is no longer used) cause bone disease and my parathyroids to become overactive.

Prednisone - night sweats; weight gain; chubby cheeks;  mood swings; insomnia; nausea, vomiting, or stomach upset; fatigue or dizziness; muscle weakness or joint pain; or increased hunger or thirst.

Prograf - Constipation

Cellcept - Acne; anxiety; back pain; constipation; dizziness; headache; increased hair growth; indigestion; loss of appetite; muscle cramps; muscle or joint pain; nausea; shakiness; sleeplessness; stomach bloating; weakness; weight gain.

I took Cyclosporin for short time with my 2nd transplant too but not long enough to experience any side effects!

[angela515]

Well, I don't have a transplant right now but I've had four of them so let's see if I can remember all that happened from the meds.

Imuran (which is no longer used) cause bone disease and my parathyroids to become overactive.

Your the 2nd person on here that has had problems with Imuran, I was on it for a long time, but for a different reason, not for a transplant.. but I never had any side-effects from it...  it worked good for what i was taking it for and that was it.

[Romona]

Well, I don't have a transplant right now but I've had four of them so let's see if I can remember all that happened from the meds.

I hope you are feeling ok. You have been through a lot. 



EDITED: Fixed Quote - okarol/moderator

[Jenny]

The aspirin is so that the blood does not clot. Adjel has a more severe case, so he is on warfarin, which is a blood thinner, just like aspirin, but it has a certain level that it has to be. It has to be built up. Aspirin does the same thing, but there is no clotting time test.

[oswald]

i take 5 mgs of predisone per day,  1000 mgs of cellcept twice a day, 2 mgs of prograf twice a day.  i have seen no ill side effects.  however my wife says she has seen my hands tremble once in awhile.  i did not know that was a side effect of prograf. 

[angela515]

i take 5 mgs of predisone per day,  1000 mgs of cellcept twice a day, 2 mgs of prograf twice a day.  i have seen no ill side effects.  however my wife says she has seen my hands tremble once in awhile.  i did not know that was a side effect of prograf. 

It's also a side effect of prednisone.

[oswald]

i did not know that. 

[Katonsdad]

Thanks for all the great tips ...... Now I can say my crappy handwriting is from the hand tremors from Prograf not that I just write crappy ..

Actually I take Prograf  5 mg X2  ,   Predizone  5 mg 1 a day and they added Zocor as a new drug for the Cholesterol and the Transplant
(New Doctor did that)

Side effects is Hair loss from the Prgraf (read on their Website it causes hair loss) Tremors in right hand and the
worst side effect is an increased chance for Skin Cancer .   I have had several spots removed and it is due to the immono drugs,

Well  , I can wear a hat and slather myself in SPF100 , It is still worth the side effects

Katonsdad

[st789]

Shilvering in the summer.  Feeling cold quite often even after transplant.

[KT0930]

Like a few others, I had a transplant long ago enough to have been on Imuran. I honestly don't think I had any problems from it. I was on it from such a young age (7.5) that I don't know what was a side effect and what was just me.

January 1982: imuran and prednisone
March 2002: imuran, prednisone, prograf, and cyclosporine for a time. Dropped cyclo and switched to cell-cept. Dropped cell-cept & imuran, remained on prednisone & prograf for the remainder of the transplant.

I'm FINALLY being weaned off the prednisone and am a week away from being off it for the first time since my first transplant.

[angela515]

Like a few others, I had a transplant long ago enough to have been on Imuran. I honestly don't think I had any problems from it. I was on it from such a young age (7.5) that I don't know what was a side effect and what was just me.

January 1982: imuran and prednisone
March 2002: imuran, prednisone, prograf, and cyclosporine for a time. Dropped cyclo and switched to cell-cept. Dropped cell-cept & imuran, remained on prednisone & prograf for the remainder of the transplant.

I'm FINALLY being weaned off the prednisone and am a week away from being off it for the first time since my first transplant.

So glad you get to come off the evil/good drug. 

[Just Me]

I had my transplant on November 29th and the only side effect I've had is swelling in my abdomen (near my incision).  My doctor thinks it is from the Sirolimus (aka Rapamune).  I also had 4 days of Thymoglobulin at the hospital and I go in for an IV infusion of Belatacept (a new drug in phase III trial stage) every 2 weeks and it will eventually be just once a month.  Other than the swelling, I feel great!



(no Prograf, Prednisone, or Cellcept for me!)

[Gram2Twinz]

Could this be a side effect of the post transplant medication- fingernail changes? I looked up online and the closest name I could come up with is: "Half & Half Nails"- turning opaque white from the "moon" and working its way to the tip of each and every nail. Any ideas? Our transplant RN doesn't seem to know. We will go to clinic in the morning and see if anyone has any ideas, but this is the best place to start! Any similar issues with fingernail health, either pre or post transplant?

[MIbarra]

My fingernails are a lot stronger. Not sure if that's due to the transplant meds or some other meds I'm on though or some effect of a working kidney (well halfway working kidney).

[Chris]

I never looked it up myself, but there are so many things going on with me that I am not sure I can contribute it to the transplant meds. But I have noticed a change.

[okarol]

Could this be a side effect of the post transplant medication- fingernail changes? I looked up online and the closest name I could come up with is: "Half & Half Nails"- turning opaque white from the "moon" and working its way to the tip of each and every nail. Any ideas? Our transplant RN doesn't seem to know. We will go to clinic in the morning and see if anyone has any ideas, but this is the best place to start! Any similar issues with fingernail health, either pre or post transplant?

Hi GT2,
Are you taking Rapumune (sirolimus)? I found the following:

Nail and Hair Pathologies

...reported nail abnormalities in 74% of patients studied. Pathologies included nail fragility, slow growth, longitudinal ridging or fissures, distal onycholysis, erythema, and splinter hemorrhages of the nail plate. Mild hair loss of the scalp and hypertrichosis of the face was also reported. (1) However, patients receiving hemodialysis and renal transplants often have nail findings including onychomycosis, splinter hemorrhages, leukonychia, longitudinal ridging, and half-and-half nails. (15)

In the study performed by Mahe et al, few non-melanoma skin cancers were reported. Other miscellaneous skin changes including xerosis, fragility, hyperpigmentation of the face, acrocyanosis, Raynaud's phenomenon, Henoch-Schonlein purpura in one patient, psoriasis and alopecia areata in one patient, and alopecia areata in a single patient developed over the course of the trial. Whether or not these events were related to the administration of sirolimus could not be determined.

Although the mechanism may be unclear, it is apparent that sirolimus is capable of producing a variety of skin disorders. Acne-like eruptions, edemas, xerosis, aphthous ulceration, epistaxis, and nail involvement are the most frequently reported and nearly all of these resolved only with the discontinuation of sirolimus. Therefore, in order for a dermatologist to effectively and efficiently treat a patient with such a reaction, he must be acquainted with the many cutaneous effects of sirolimus as well as the risks and benefits of discontinuing therapy. Further, as the use of sirolimus increases due to transplant-related malignancy, dermatologists may be faced with the dilemma of battling sirolimus related cutaneous side effects or the return to prior therapies, such as cyclosporine and their associated toxicities.

More info here: http://www.lymphedemapeople.com/wiki/doku.php?id=lymphedema_from_sirolimus_treatment

[Gram2Twinz]

Okarol- thanks for info- however- hubby  is taking Neoral-cyclospoine, they are thinking of changing to Rapamune. I will mention the information you posted when we speak to our RN. Thanks for the information- I knew I was asking the right group- Wow you guys are GOOODDDDD!!