I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on September 10, 2007, 04:14:03 PM
-
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.
-
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 ;D
-
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.
-
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.
-
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 ;D
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.
-
I am on a steroid-free protocol also... I am on Prograf and Rapamune. No side effects.
-
Jenna's anti-rejection meds are Prograf and Cellcept. She is on a steroid free protocol.
The few other meds are vitamins and minerals.
-
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.
-
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?
-
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. ::)
-
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.
-
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. :)
-
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?
-
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. :popcorn;
EDITED: Fixed quote error - Goofynina/Admin.
-
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!
-
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.
-
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 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.
-
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.
-
and also a baby aspirin.
Why aspirin? People are told not to take Aspirin or Ibuprofen after a transplant... so I'm curious.
-
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.
-
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?
-
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)!
-
I'm on Prograf - I don't have problems with tremors or shakiness, but it is a common side effect.
-
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.
-
Karol- So does she have a history of clots? Or they just found it necessary to take the precaution? Just curious, 'cause everyone's surgeons do things differently, I like to hear what all the different dr's do. :)
As for the tremors, I also take Prograf, and have no tremors... Roxy said it well. :)
-
Karol- So does she have a history of clots? Or they just found it necessary to take the precaution? Just curious, 'cause everyone's surgeons do things differently, I like to hear what all the different dr's do. :)
No history of clots, it's standard protocol with the transplant team and with Jenna's local nephrologist as well.
-
What are the advantages/disadvantages of a steroid protocol vs non-steroid program?
If the hospital runs both programs, how is it determined what course of meds you are put on? :-\
-
What are the advantages/disadvantages of a steroid protocol vs non-steroid program?
If the hospital runs both programs, how is it determined what course of meds you are put on? :-\
more here -- http://www.medscape.com/viewarticle/501871_print - Long-Term Prospective Study of Steroid Withdrawal in Kidney and Heart Transplant Recipients
They enrolled patients for steroid withdrawal only if considered to be low risk.
Each transplant team has their own program so it's best to ask them for more information.
-
Wattle, for me it was just a matter of deciding which side effects I was willing to deal with and which side effects I wasn't (if they happened to appear). Everybody's different, and sometimes it just comes down to personal preference.
-
I love reading this thread because it reminds me that side effects are NOT a sure thing! Drug side effects freak me out because I've had some really wacky ones and they haven't even been immunosuppressants!
Thanks for the positive sharing.
-
Can't remember who it was that said that they were having trouble sleeping from the prednisone. I haven't had a transplant yet, but I do have a lot of experience with steroids due to my Addison's disease. I currently take 2 mg prednisone and up to 9mg depending upon my health status. I can tell you if you take prednisone past 3 or 4pm in the afternoon it will more than likely throw off your sleep schedule. I take mine in the early am (5:30am) and go back to sleep. Please keep in mind I am taking it to replace hormones that my body does not make (Cortisol). But, generally speaking the earlier in the day you can take it the better off. Reason is, your body naturally produces a similar hormone that rises in the morning to help you wake up and if you take prednisone towards evening you are basically waking yourself up.
-
When i had my transplant in 92 i was on cyclosporin, prednisone, immuran. The immuran almost killed me. The prednisone made me eat more and i felt like my insides were coming out. The cyclosporin however gave me the oddest side effect. If you see my picture on this site i have allot of hair and it is straight. The cyclosporin made my hair curly! All of these side effects were gone after a year or two.
-
When i had my transplant in 92 i was on cyclosporin, prednisone, immuran. The immuran almost killed me.
How did Immuran almost kill you?
I took it for a few years for my Lupus.
-
Hands are shaky but didn't realize that was from Prograf.
I have acne on my chest and night sweats. It's getting better though.
Taking Prograf 4mg X twice daily, Cellcept 1000 X twice daily, and Prednisone 14mg in the morning.
-
Rimbo...things will definitely improve as your doses decrease. I'm down to Prograf 3mg 2x, Cellcept 500mg 2x, and Prednisone 5mg in the morning. I've been at these doses for 6 months and I feel fantastic.
-
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)!
The tremors for me come and go. Mostly in my legs and occassionaly in my right hand if I am holding something in like a pen or a fork. It doesn't effect my writing or eating. It seems to happens if I am holding things in one postion. It doesn't bother me when I use the mouse or type. Changing positions seems to help. Hands are shaky but didn't realize that was from Prograf.
I have acne on my chest and night sweats. It's getting better though.
Taking Prograf 4mg X twice daily, Cellcept 1000 X twice daily, and Prednisone 14mg in the morning.
After you have the Prograf at a steady level or possibly once a day dosing, things improve greatly. It took about 4-5 months for me to get to that point. I take 5mg once a day.
-
I have a question to anyone who can answer regarding these "tremors" you talk about, WHAT ARE THEY?? The reason i ask is this, everytime i seem to go into a store or especially a restaurant i get the chills so bad, the food falls off my fork cuz i am literally shivering so bad, are these the tremors you are all talking about? if so, what can be done about them, i get so embarrased. :-[
-
Before my transplant I was freezing all the time. Air conditioning was terrible for me. I think that has something to do with kidney disease and anemia.
After the transplant I am comfortable. I am like everyone else. If they are hot I am too.
The tremors I have are a slight vibration of my hand or legs.
-
I still get cold easy, probably from my SLE, because I remember being cold easy before dialysis but after dx'd with SLE.
As for tremors, I used to get them with the prednisone, so I had them for years and years... they all of a sudden went away when i was still on prednisone, idunno why.. i'm thankful they aren't back now that I am on prograf.. (knock on wood!)
-
I have a question to anyone who can answer regarding these "tremors" you talk about, WHAT ARE THEY?? The reason i ask is this, everytime i seem to go into a store or especially a restaurant i get the chills so bad, the food falls off my fork cuz i am literally shivering so bad, are these the tremors you are all talking about? if so, what can be done about them, i get so embarrased. :-[
Goofy, I think that is another common side effect of being a dialysis patient. I am ALWAYS cold. My friends and family all joke about having to walk around in their swimwear when they visit because I have the heating turned up so high. ::)
I am glad to read that this will improve when a transpalnt comes along. 8)
-
I was cold all the time pre dialysis and during dialysis, I thought I was told that it was because of high phosphorus levels. O well.
Besides Prograf, Cellcept, and Prednisone, I also take Protonix, Sodium Bicarb, Bacterum, Adalat (for BP), and Lexapro for anxiety. I was taking Lexapro before when I found out my kidneys had failed to help deal with the anxiety of it all. My doctor now told me to just stay on it because a lot of the medicines I'm taking now will cause anxiety. So I do have a lot of sleepness nights. Also still trying to get used to have to go to the bathroom all the time which is a change from the twice a day during dialysis.
-
Goofy, I think that is another common side effect of being a dialysis patient. I am ALWAYS cold. My friends and family all joke about having to walk around in their swimwear when they visit because I have the heating turned up so high. ::)
:rofl; :rofl; :rofl; Wattle, you literally made me choke (from laughing) when i read this, but i am glad to hear i am not alone :cuddle;
-
I have a question to anyone who can answer regarding these "tremors" you talk about, WHAT ARE THEY?? The reason i ask is this, everytime i seem to go into a store or especially a restaurant i get the chills so bad, the food falls off my fork cuz i am literally shivering so bad, are these the tremors you are all talking about? if so, what can be done about them, i get so embarrased. :-[
I get this way a lot (almost on a daily basis), but I haven't had a transplant. My chills are from my anemia. My shaking gets so bad, it affects my note taking in class. I get home and can't read my notes. I sit in class, in the middle of summer, among 18 year olds in their super short shorts and super short shirts, freezing my a** off in jeans, a long sleeve shirt and sweatshirt! My stupid doctor actually told me that "most women just get colder as they get older." Bull shit! I'm not THAT stupid! When I start shaking that bad at home, my poor husband gets this pathetic look on his face and just starts piling on the blankets!
-
O h yeah, and it's been in the mid to high 70's here for the last few days and I've had the heat on, set to 78 degrees, while my husband's at work! Brrrr...
-
I remember standing on the sidewalk in Pittsburgh in the sunlight to warm up. It was 89 degrees and I was so cold. I would have the heat on during the summer in the car.
-
I am feeling cold as well. As younger I was the one feeling hot all the time, never cold feet or hands, now I am feeling cold and have my skin on goose bumps all the time at work. At home it is better, but here I have 85 degrees ;).
I hope I get back to "normal" after transplant.
Besides Prograf, Cellcept, and Prednisone, I also take Protonix, Sodium Bicarb, Bacterum, Adalat (for BP), and Lexapro for anxiety.
Why do you still need Sodium Bicarb? I have been told all the time that I should not need it anymore after transplant.
-
Sometimes after a transplant things get unbalanced. I was put on and taken off so many things. It is so different than pre-transplant. I was told to eat lots of red meat at first to get my iron up. Because of some of the meds my potassium went too high. Now it is on the low side. My phophorus is too low. Magnesium was low. Still having parathyroid problems. I was even told to increase my salt intake for awhile because my sodium was too low. I still have a hard time eating what I should. After being on a renal diet, I think twice about what I eat and often don't eat what I need.
-
I am on CellCept and Prograf and the only side effect that I have is slight tremors in my hands. Even when my dosage is lowered, I still have the tremors, but they get worse when I am sick. They don't bother me to much. I beleive my transplant was the best medical procedure I have had done to me.
Chris
-
From the Prograf website: Tremor occurred more often in Prograf-treated kidney transplant (54%) and heart transplant patients (15%) compared to cyclosporine-treated patients.
For Jenna it is a barely noticeable quiver when she extends her left arm - she doesn't seem to notice except when the neph asks to hold her hands out to check for it.
-
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 :lol;
-
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!
-
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.
-
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
-
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.
-
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.
-
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.
-
i did not know that.
-
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
-
Shilvering in the summer. Feeling cold quite often even after transplant.
-
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.
-
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. >:D
-
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!)
-
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?
-
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).
-
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.
-
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
-
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!! :2thumbsup;