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

Posted by jolinda @jolinda, Thu, 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?

@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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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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@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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@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 am happy that you have joined this discussion. We are all patients and we are all learning together and supporting each other when we share our experiences. Thank you for sharing. I hope that the biotin will be something you can try. I was told 2500 would be okay for me to take after transplant and my hair and my nails improved (My finger and toe nails, suffered miserably during my months with critical liver failure.)

Did you know that on Connect there is an entire discussion group for Autoimmune Diseases? I invite you to take a look; to join in; and share with your family.
https://connect.mayoclinic.org/group/autoimmune-diseases/

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@rosemarya

@kidsmomof9, I am happy that you have joined this discussion. We are all patients and we are all learning together and supporting each other when we share our experiences. Thank you for sharing. I hope that the biotin will be something you can try. I was told 2500 would be okay for me to take after transplant and my hair and my nails improved (My finger and toe nails, suffered miserably during my months with critical liver failure.)

Did you know that on Connect there is an entire discussion group for Autoimmune Diseases? I invite you to take a look; to join in; and share with your family.
https://connect.mayoclinic.org/group/autoimmune-diseases/

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Thank you so much for your kind words and the link!

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I take 1 mg Tacrolimus 2x a day; Myfortic 2x a day; and because I am only 11 weeks post-transplant, I am still taking Valcyte 1xdy and NebuPent 1xmonth (because I am allergic to Bactrim). I have had some stomach issues post-transplant, which I am attributing to Myfortic – not on an ongoing basis but about once a week. I'm not sure a lot can be done about that but will raise the issue with my doctor on our video chat tomorrow:) I take my medicines with food morning and night, but find I can be off half an hour to an hour, so I may need to rearrange my schedule a bit to be more consistent. Jolinda, I might try your idea of waking up early to take meds and then going back to bed!

The NebuPent nebulizer treatments are very rough! It burns the esophagus on the way down- like a chemical burn – and then causes asthmatic reactions for me for up to a week. Because of this, my doctor is switching me over to a drug called Dapsone. I only need to take the Valcyte for a total of 3-5 months and the Dapsone for a total of 6 months, so it is short-term stuff. And I can handle most things, for short periods of time.

I am interested in the research on Tacrolimus vs Sirolimus, in terms of long term challenges.

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@stephanierp

I take 1 mg Tacrolimus 2x a day; Myfortic 2x a day; and because I am only 11 weeks post-transplant, I am still taking Valcyte 1xdy and NebuPent 1xmonth (because I am allergic to Bactrim). I have had some stomach issues post-transplant, which I am attributing to Myfortic – not on an ongoing basis but about once a week. I'm not sure a lot can be done about that but will raise the issue with my doctor on our video chat tomorrow:) I take my medicines with food morning and night, but find I can be off half an hour to an hour, so I may need to rearrange my schedule a bit to be more consistent. Jolinda, I might try your idea of waking up early to take meds and then going back to bed!

The NebuPent nebulizer treatments are very rough! It burns the esophagus on the way down- like a chemical burn – and then causes asthmatic reactions for me for up to a week. Because of this, my doctor is switching me over to a drug called Dapsone. I only need to take the Valcyte for a total of 3-5 months and the Dapsone for a total of 6 months, so it is short-term stuff. And I can handle most things, for short periods of time.

I am interested in the research on Tacrolimus vs Sirolimus, in terms of long term challenges.

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@stephanierp, It is awesome to hear that you are doing well! I'm curious, Have you been back to the transplant department to see your doctor in person since your return home?
I have been taking tacrolimus and cellcept since my transplant in 2009, with minor dosage adjustments along the way. These meds are working well for me with a liver and a kidney. I am going to share information on both meds, but I have not seen any research on the long term effects of one vs the other. I think that your transplant doctor could help you with that information as well as information for why one is best for you over the other.
https://www.mayoclinic.org/drugs-supplements/tacrolimus-oral-route/description/drg-20068314
https://www.mayoclinic.org/drugs-supplements/sirolimus-oral-route/description/drg-20068199
If you will accept a some advice that was shared with me – Find a time for taking your meds at a time that will be the most convienient for your schedule. Remember that you will need to take the anti-rejection medications for the rest of your life, so do what will work best for you as your life returns to normal and your activity increases. My selected time is 8:00 AM and 8:00 PM. I have the alarm set on my iphone.

I hope you have a good visit tomorrow! I have never had a video chat with any of my doctors. I would love if you would drop a line and tell me about how it works for you!

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@ladydidehart

Good morning! I’m 3 months post kidney transplant and doing very well!! Amen to that. My question is about my extreme hair shedding. It’s not chunks of hair loss, but more constant shedding of strands of hair. I’m not on Tachrolimus (sp?). I’m on Mycophenolate and Belatacept. Anyone else experience the same thing? How long does it last? Does Biotin or anything else help?

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@ladydidehart, I want to welcome you to Mayo Connect. It is wonderful news to hear about your recent kidney transplant! Congratulations on your 3 month post transplant recovery. I assure you that you are in good company here with other patients who share a similar concern.

In the discussion -Transplant anti-rejection medications. What's your advice? – you will meet members who have asked about and also shared their own post transplant hair loss experiences. Click on the blue link, and you are there. I will meet you there.
I am also going to request that @colleenyoung move your post to that discussion.
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/

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Good morning! I’m 3 months post kidney transplant and doing very well!! Amen to that. My question is about my extreme hair shedding. It’s not chunks of hair loss, but more constant shedding of strands of hair. I’m not on Tachrolimus (sp?). I’m on Mycophenolate and Belatacept. Anyone else experience the same thing? How long does it last? Does Biotin or anything else help?

FD6D61CC-8826-439D-AEFF-CF5CB0CC9155

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@rosemarya

@ladydidehart, I want to welcome you to Mayo Connect. It is wonderful news to hear about your recent kidney transplant! Congratulations on your 3 month post transplant recovery. I assure you that you are in good company here with other patients who share a similar concern.

In the discussion -Transplant anti-rejection medications. What's your advice? – you will meet members who have asked about and also shared their own post transplant hair loss experiences. Click on the blue link, and you are there. I will meet you there.
I am also going to request that @colleenyoung move your post to that discussion.
https://connect.mayoclinic.org/discussion/your-anti-rejection-medications/

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Thank you Rosemary!

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@gaylea1

@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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This is reassuring to me since I’m just 3 months post transplant. How many mcg of Biotin do you take per day?

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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 had a heart Tx 17 years ago. I now take 0.5 mg of tacrolimus twice a day, and 1000 mg of cellcept twice a day. Never have had rejection and no drug side effects.

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@azdan99 first congratulations on your 17yr. heart. Second, what are you still taking the Cellcept for?

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@azdan99 Hi and welcome to Connect, That is awesome 17 years post thanks for sharing and such a low dose that's great.

I'm a Heart transplant also and now on my third year post. I too live in Arizona and got my Heart at Mayo Phoenix. I always appreciate hearing about others journeys and it sounds like you have had a successful journey since transplant.
Have a Blessed Day
Dana

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@ladydidehart

This is reassuring to me since I’m just 3 months post transplant. How many mcg of Biotin do you take per day?

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@ladydidehart that is an answer you would have to get from your transplant team. Everyone is different depending on what other health issues you have going on. I hope this helps.

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