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?

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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@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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@jolinda I also had hair loss post transplant and started taking biotin. Within a few months the hair loss ended and it has gradually started coming back.

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@jolinda I was taken off most of my anti-rejection drugs fairly quickly. Within 4 months I was taken off cellcept and prednisone. Then my tracilomus was reduced to 1mg every 12 hours. That's all I take now.

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@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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Am at 7 months post transplant and I am on .5 every 12 hours.

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@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially, they recommended that I drink 80 – 100 ounces of fluid a day and that helped, but not enough. They then changed me to sirolimus and since then I have been fine.
The only noticeable effect I had was thinning hair but the transplant team suggested that I take biotin so I do. I have continued to take it because it is also good for your fingernails and mine are very thin.
I was able to drop from 4mg a day of sirolimus to 2.5 when I chose to take it consistently without food. I set my alarm for 6:30, get up and take my medications, and try to go back to sleep for another hour but usually that does not happen so I just get up and do something until the hour has elapsed. Since I tend to be inconsistent when I eat my breakfast, and I am supposed to take the sirolimus at the same time daily, I find this works for me.
JK

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@contentandwell

@jolinda I was initially on tacrolimus but it caused my creatinine numbers to be high. Initially, they recommended that I drink 80 – 100 ounces of fluid a day and that helped, but not enough. They then changed me to sirolimus and since then I have been fine.
The only noticeable effect I had was thinning hair but the transplant team suggested that I take biotin so I do. I have continued to take it because it is also good for your fingernails and mine are very thin.
I was able to drop from 4mg a day of sirolimus to 2.5 when I chose to take it consistently without food. I set my alarm for 6:30, get up and take my medications, and try to go back to sleep for another hour but usually that does not happen so I just get up and do something until the hour has elapsed. Since I tend to be inconsistent when I eat my breakfast, and I am supposed to take the sirolimus at the same time daily, I find this works for me.
JK

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@contentandwell
I did know that some people switch meds so your experience with creatinine gives me helpful insight into this. I guess everyone tolerates meds differently. I take tacrolimus but I have heard that sirolimus has a lower rate of cancer. Have you heard this?

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I take cellcept and tacrolimus for my liver and kidney transplant. I used to take a low dosage of prednisone per researched evidence related to my situation for several years.
While most people complain about prednisone, I experienced a positive effect! I have an autoimmune condition, Vitiligo, that produces patches of nonpigmented skin and premature white hair. I noticed that within a couple years after my transplant that my skin was an almost even skintone with no white areas. That was a pleasant surprise! When I was tapered off prednisone a few years ago, the vitiligo began to show up on my skin again. .

Anybody have a similar experience?

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Hi Rosemary, Congratulations on your transplantversary! And thank you for all of your thoughtful responses on Mayo Connect. What would we do without you? My heart transplant was 3 years and nearly three months ago. Was placed on tacrolimus and cellcept and prednisone. Like you, I have an autoimmune disease – sarcoidosis – which caused the cardiomyopathy in my heart. Still on 5 mg on prednisone; it can cause bruising on my forearms – I do a lot of gardening and am a real klutz – but my doctor wants to keep the sarcoid at bay. I don't think I'll ever be off of it. The tacrolimus affected my kidney function – and I had measurable hair loss – and I was switched to sirolimus after 8 months post transplant. My hair now is thicker than ever before in my life. I have gained weight – nearly 20 pounds – I must say I am enjoying life and food. But I'm active and now that the weather is in the 90s in Arizona, I'm swimming every day and doing water aerobics. My skin is fragile in certain areas and I've had to have cauterization to stave off infection. But I'm not complaining. Every day is a gift!

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@estrada53

Hi Rosemary, Congratulations on your transplantversary! And thank you for all of your thoughtful responses on Mayo Connect. What would we do without you? My heart transplant was 3 years and nearly three months ago. Was placed on tacrolimus and cellcept and prednisone. Like you, I have an autoimmune disease – sarcoidosis – which caused the cardiomyopathy in my heart. Still on 5 mg on prednisone; it can cause bruising on my forearms – I do a lot of gardening and am a real klutz – but my doctor wants to keep the sarcoid at bay. I don't think I'll ever be off of it. The tacrolimus affected my kidney function – and I had measurable hair loss – and I was switched to sirolimus after 8 months post transplant. My hair now is thicker than ever before in my life. I have gained weight – nearly 20 pounds – I must say I am enjoying life and food. But I'm active and now that the weather is in the 90s in Arizona, I'm swimming every day and doing water aerobics. My skin is fragile in certain areas and I've had to have cauterization to stave off infection. But I'm not complaining. Every day is a gift!

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As far as dosing goes. – 1 mg of sirolimus, 500 mg of cellcept 2x day and 5 mg of prednisone. 🙂

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@jolinda

@contentandwell
I did know that some people switch meds so your experience with creatinine gives me helpful insight into this. I guess everyone tolerates meds differently. I take tacrolimus but I have heard that sirolimus has a lower rate of cancer. Have you heard this?

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@jolinda I had not heard that. I trust my transplant surgeon fully, maybe too fully, because I don't tend to research things as much as I usually have with other doctors. In my opinion, he is absolutely the greatest, and I tend to be a bit of a cynic when it comes to doctors.
Now I am going to have to research that when I have more time.
JK

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@estrada53

As far as dosing goes. – 1 mg of sirolimus, 500 mg of cellcept 2x day and 5 mg of prednisone. 🙂

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@estrada53 I too am on 5 mg of prednisone. It has not caused any problems that I was aware of except for the bruising on my arms, until I discovered that it had caused my osteoporosis.
The bruising is called purpura and it can be helped by applying a topical (approved by my transplant team). The transplant dermatologist at Mass General prescribed it for me. It is often used for acne too! It toughens your skin a bit to prevent the bruising. There is also an OTC cream made especially for purpura called DerMend. That helps too.
Did your weight gain happen immediately? I am really struggling with my weight currently and have been since last summer, which would have been almost 3 years post-transplant. I suspect I will always have to take prednisone because my blood numbers (platelets especially) run low and prednisone helps with that.
If you seek the prescription cream, be aware that it is expensive and not covered by insurance, but if you use the app GoodRx you can find it priced fairly reasonably. I haven't used it for a while, I primarily didn't want those bruises limiting me in getting a dress for my son's wedding last August.
JK

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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

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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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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@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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