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

Posted by jolinda @jolinda, Apr 23, 2020

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?

Interested in more discussions like this? Go to the Transplants Support Group.

@contentandwell

@kidsmomof9 I guess if your incontinence didn't start until recently we can't blame giving birth!
I take 2500 mcg of Biotin, twice a day. I believe that amount was what my transplant team recommended, I always try to follow their recommendations.
The transplant dermatologist I go to has said that anything over 30 SPF is a waste, and if it costs more to not bother! I have seen this mentioned in other writings also. If it's not more costly of course, it can't hurt.
I don't know anything about autoimmune conditions but it must be troublesome to have it widespread in your family. So far, we have not had any of those situations.
JK

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Thank you so much for your input!

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A after my transplant two years ago, I was losing a lot of hair, I contacted my transplant team at Mayo and they referred me to the specialty pharmacy. I was told by them to take 1000 mcg of biotin a day. It really helped. I no longer take it. My hair seems to be back to normal.

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@kidsmomof9

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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@kidsmomof9 I guess if your incontinence didn't start until recently we can't blame giving birth!
I take 2500 mcg of Biotin, twice a day. I believe that amount was what my transplant team recommended, I always try to follow their recommendations.
The transplant dermatologist I go to has said that anything over 30 SPF is a waste, and if it costs more to not bother! I have seen this mentioned in other writings also. If it's not more costly of course, it can't hurt.
I don't know anything about autoimmune conditions but it must be troublesome to have it widespread in your family. So far, we have not had any of those situations.
JK

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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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@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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@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.

Jump to this post

@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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@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, 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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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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