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

[angela515]

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.

[okarol]

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.

[Wattle]

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?   

[okarol]

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.

[Roxy]

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.

[mrhecht]

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.

[Lulu]

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.

[keefer51]

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.

[angela515]

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.

[rimbo74]

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.

[Jill D.]

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.

[Romona]

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.

[goofynina]

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. 

[Romona]

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.

[angela515]

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!)

[Wattle]

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. 

[rimbo74]

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.

[goofynina]

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.   

    Wattle, you literally made me choke (from laughing) when i read this, but i am glad to hear i am not alone   

[paddbear0000]

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!

[paddbear0000]

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...

[Romona]

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.

[waitlisted]

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.

[Romona]

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.

[Chris]

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

[okarol]

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.