Transplant anti-rejection medications. What's your advice?

Posted by jolinda @jolinda, Apr 23 12:18pm

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

@gphetteplace

Hi! Thank you for starting this discussion. The weirdest effect I’m having is nocturia, which apparently can be a side effect of the Tacrolimus. I haven’t slept through the night in the two months since transplant since I have to go to the bathroom four times a night, even if I stop drinking at 6:00pm. Any one else have that problem? Does it get better?

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@gphetteplace i am almost 1 1/2 years post transplant. I take tacrolimus 1mg and have no side effects whatsoever as far as nocturia or bladder issues. I do take Prograf which is not a generic brand of tacrolimus. I don't get up to urinate during the night and I drink at least 48 oz of water in the evening prior to sleep. I also drink water if needed during the night which is only to alieve a dry throat which doesn't happen often. I have never had a UTI in my entire life. I'm sorry you're going through this but I can offer no explanation just my own experience.

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@jolinda

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?

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@jolinda I'm not really sure. It was nevered conveyed to me that the match was above average. The surgery was about 9 hours so it was not perfect for sure.They took me off the prednisone and cellcept about 4 months after transplant and lowered my tac to the 1mg. Its been working for me so far!

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@gphetteplace

Hi! Thank you for starting this discussion. The weirdest effect I’m having is nocturia, which apparently can be a side effect of the Tacrolimus. I haven’t slept through the night in the two months since transplant since I have to go to the bathroom four times a night, even if I stop drinking at 6:00pm. Any one else have that problem? Does it get better?

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I am 2 years, 4 months post liver transplant. I, too, do not sleep during the night, with frequent (3-4) trips to urinate. The water consumption has not made a difference, I did not know that the tacrolimus and nocturia might be connected. It has just become a part of “transplant life”. I take 2 mg am and pm, along with celcept. Come to think of it, the waking up/not resting well has gotten worse since they have upped my tac dosage. It is a constant juggling act, moving puzzle pieces. I fully trust my Mayo, Jacksonville, team and thank the Lord and my donor daily for this “GIFT OF LIFE”!

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@danab

@contentandwell @gphetteplace same with me I get up at least 2 or 3 times a night and I'm on Tacrolimus 1.5 bid interesting but at least with me I can fall back to sleep rather quickly. I'm now just over 2 years post and I was told the same about gravity. I will also say that I have been told I have a rather small bladder and always figured that had something to do with it.

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@danab I just recently wondered if I might have a small bladder. My mother had a problem and so does my sister, so it seems likely. Some nights I do get back to sleep in a reasonable amount of time but if I awaken close to morning, such as 4:00 or after, I rarely do.
JK

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@contentandwell

Welcome to Connect, @gphetteplace
You have brought something up that I never knew but that may be affecting me also! I googled sirolimus and that too can cause nocturia. I take sirolimus as my immunosuppressant after a liver transplant and I also have nocturia. No one ever suggested that the immunosuppressant could cause that, I assumed it was just typical incontinence. I also find that even when I stop drinking early, the urine tends to come out during the night. One doctor offered an explanation for that — when you are upright during the day the fluid goes down due to gravity but when you are prone it moves up within your body. Sounds plausible.
I have had Botox two times for incontinence and it has helped a little bit. Unfortunately having Botox for incontinence very often causes a UTI too and both times that has happened to me. The urogynecologist gave me an antibiotic to take for four days, starting with the day of the injections, to try to ward off a UTI but it didn't work, not too surprising since we are more prone to infections. I did not have any pain with the UTIs just a tingling. I wonder if that's because the Botox numbs the nerves, I plan to ask the urogynecologist about that.
I am 3.5 years beyond my transplant so if my incontinence is from sirolimus I would have to say it does not go away. It is possible though that mine is simple incontinence from other causes. I hope that yours will go away, I know too well how much getting up a lot at night affects you, it is very disruptive to your sleep. I often find I need a nap during the day.
JK

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This is why I love this group, you all validate things I thought were my own quirks! We can gripe to our doctors and nurses but they just read about side effects where we all live side effects. I don't get up so much at night as I did when I was first transplanted but I notice how frequently I need to "go" after taking my evening meds. My husband and I typically watch TV in the evenings and I have him pause our shows every 40 mins to use the bathroom after taking my meds. I always thought it was just me but I guess not. I also find myself much more thirsty after taking meds and I wouldn't ever want to restrict my liquids.

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@jolinda

This is why I love this group, you all validate things I thought were my own quirks! We can gripe to our doctors and nurses but they just read about side effects where we all live side effects. I don't get up so much at night as I did when I was first transplanted but I notice how frequently I need to "go" after taking my evening meds. My husband and I typically watch TV in the evenings and I have him pause our shows every 40 mins to use the bathroom after taking my meds. I always thought it was just me but I guess not. I also find myself much more thirsty after taking meds and I wouldn't ever want to restrict my liquids.

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I feel the same, it's a great relief to know we are not alone on some things

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@jolinda

Hair loss! One of my first side-effects showed up just days after being released from the hospital when I noticed gobs of hair falling out in the shower. I was so grateful for the new kidney and it seemed petty to care about my hair but I worried if it would never stop. One of my doctors at Mayo Clinic theorized that my hair loss was caused from a combination of trauma to my body from surgery, being severely anemic and as a side-effect from one of my anti-rejection drugs. She prescribed Vitron C (an high-potency iron supplement with vitamin c) to treat the anemia but there was nothing else she could do. My hair continued to fall out to a lessening degree for the next two years until it finally rebounded. I will never have the same hair but it got better. I was recently told hair loss should be treated by a dermatologist which I think is interesting.

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I didn't have hair loss after my liver transplant or if I did I didn't notice it. My transplant was 4 years ago. I'm on 1mg tacrolimus twice a day and still no issues. I hope your hair loss issue subsides!!!

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@jolinda

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?

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I too only take 1mg Tacrolimus in the am and pm.

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I was told to stay out of the sun as much as possible after my transplant and put on tacrolimus. Hard to do when you like to fish and disobey the suggestion. I year post transplant I developed skin cancer on my cheek that was surgically removed. Nothing in the 10 years after that but now wear a big brimmed hat, long sleeves and >30 sunblock. No other noticable effects.

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@jerrynord

I was told to stay out of the sun as much as possible after my transplant and put on tacrolimus. Hard to do when you like to fish and disobey the suggestion. I year post transplant I developed skin cancer on my cheek that was surgically removed. Nothing in the 10 years after that but now wear a big brimmed hat, long sleeves and >30 sunblock. No other noticable effects.

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@jerrynord, Thank you Jerry, for bringing up this topic!
I know that you intended to say that you put on sunscreen.😉 Congratulations for early identification and treatment for the skin cancer.

As transplant patients, we need to be especially careful when it comes to sun protection because we are more susceptible to skin cancer.
Big rimmed hats, long sleeves, and sunscreen are among the the favorite ideas being discussed in Transplants>Anyone have tips on sun protection?
https://connect.mayoclinic.org/discussion/anyone-have-tips-on-sun-protection/
***With warmer weather coming to much of the country, I invite everyone to check out this discussion. And to share your tips there so others can benefit.

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@contentandwell

Welcome to Connect, @gphetteplace
You have brought something up that I never knew but that may be affecting me also! I googled sirolimus and that too can cause nocturia. I take sirolimus as my immunosuppressant after a liver transplant and I also have nocturia. No one ever suggested that the immunosuppressant could cause that, I assumed it was just typical incontinence. I also find that even when I stop drinking early, the urine tends to come out during the night. One doctor offered an explanation for that — when you are upright during the day the fluid goes down due to gravity but when you are prone it moves up within your body. Sounds plausible.
I have had Botox two times for incontinence and it has helped a little bit. Unfortunately having Botox for incontinence very often causes a UTI too and both times that has happened to me. The urogynecologist gave me an antibiotic to take for four days, starting with the day of the injections, to try to ward off a UTI but it didn't work, not too surprising since we are more prone to infections. I did not have any pain with the UTIs just a tingling. I wonder if that's because the Botox numbs the nerves, I plan to ask the urogynecologist about that.
I am 3.5 years beyond my transplant so if my incontinence is from sirolimus I would have to say it does not go away. It is possible though that mine is simple incontinence from other causes. I hope that yours will go away, I know too well how much getting up a lot at night affects you, it is very disruptive to your sleep. I often find I need a nap during the day.
JK

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Forgive the intrusion: not a transplant patient but taking Cellcept 1000mg 2x day +prednisone bursts as needed for lupus flares. Dealing with hair loss and nocturnal incontinence and some stress incontinence during the day (although I am admittedly 56 and have given birth to 9 kids). Just wanted to let you ladies know that your discussions were very helpful to me without you even knowing!

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@jerrynord

I was told to stay out of the sun as much as possible after my transplant and put on tacrolimus. Hard to do when you like to fish and disobey the suggestion. I year post transplant I developed skin cancer on my cheek that was surgically removed. Nothing in the 10 years after that but now wear a big brimmed hat, long sleeves and >30 sunblock. No other noticable effects.

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@jerrynord You really learned the hard way that using sunscreen is imperative for us post-transplant patients on immunosuppressants. I really hate the feel of sunscreen on my skin so I just try to avoid the sun whenever possible, but do use sunscreen if I cannot avoid it. I'm glad you are now using sunscreen.
People often forget about their hands, but they are in the sun very frequently and there are hand creams with SPFs specifically for that reason. When we are driving our hands are in the sun, and in these days of frequent handwashing, it's more important than ever to reapply a hand cream with an SPF of at least 30. Supergoop and Eucerin both make good hand creams with SPFs of 40 and 30 respectively, and they do not have a feminine scent to them.

@kidsmomof9 I notice you have been on Connect for a while but I do not recall welcoming you before. If I didn't, please let me now.
I'm glad you are finding this discussion helpful. Do you think your incontinence is from childbirth or from your medications? Did you have it prior to being prescribed Cellcept and prednisone? That's one of the things I am trying to figure out, if the medications are contributing to my incontinence, or if it is just due to other factors.
JK

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@donnabalive

I didn't have hair loss after my liver transplant or if I did I didn't notice it. My transplant was 4 years ago. I'm on 1mg tacrolimus twice a day and still no issues. I hope your hair loss issue subsides!!!

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@donnabalive, Welcome you to Mayo Connect. It is a joy to hear from you and that you are a transplant recipient. Congratulations on 4 years with your organ. Would you tell us a little about yourself? What organ did you receive?

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@jerrynord

I was told to stay out of the sun as much as possible after my transplant and put on tacrolimus. Hard to do when you like to fish and disobey the suggestion. I year post transplant I developed skin cancer on my cheek that was surgically removed. Nothing in the 10 years after that but now wear a big brimmed hat, long sleeves and >30 sunblock. No other noticable effects.

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@jerrynord I also contracted skin cancer but at about 8 months post transplant. It was a lesion on my upper arm. I too had it surgically removed (yet another scar). I was being careful though. Sunscreen and stayed in the shade.

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@contentandwell

@jerrynord You really learned the hard way that using sunscreen is imperative for us post-transplant patients on immunosuppressants. I really hate the feel of sunscreen on my skin so I just try to avoid the sun whenever possible, but do use sunscreen if I cannot avoid it. I'm glad you are now using sunscreen.
People often forget about their hands, but they are in the sun very frequently and there are hand creams with SPFs specifically for that reason. When we are driving our hands are in the sun, and in these days of frequent handwashing, it's more important than ever to reapply a hand cream with an SPF of at least 30. Supergoop and Eucerin both make good hand creams with SPFs of 40 and 30 respectively, and they do not have a feminine scent to them.

@kidsmomof9 I notice you have been on Connect for a while but I do not recall welcoming you before. If I didn't, please let me now.
I'm glad you are finding this discussion helpful. Do you think your incontinence is from childbirth or from your medications? Did you have it prior to being prescribed Cellcept and prednisone? That's one of the things I am trying to figure out, if the medications are contributing to my incontinence, or if it is just due to other factors.
JK

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Thanks JK ! My youngest kids (twins) are 23 so I would have to say meds, but then I take a lot of other meds as well. I like the advice about the sunscreen and have found the neutrogena 100spf to be almost impossible to detect on my skin and the price is reasonable. As far as hair loss goes, I will have to try biotin. Does anyone have a dosage recommendation? I do not absorb many vitamins and such well if at all. I have to get thiamine & iron infused and B12 injections as well as my Benlysta infusions. It makes life kinda crazy! My family is an insane example of an autoimmune cluster. I would be happy to elaborate if anyone is interested! Thanks again for allowing me to jump in here!

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