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?

@rosemarya

Hi, mmr1984. I am sorry to hear that you are experiencing stomach cramps with your cellcept. Cellcept is an antirejection medication tht many of us transplant recipients are prescribed. It is a powerful drug and a necessary drug for us. I want to share an article that does discuss side effects, as well as the importance of following a medication schedule, and foods to avoid that might interact with medications. – Immunosuppression: Watching For and Managing Side Effects
https://connect.mayoclinic.org/page/transplant/newsfeed-post/immunosuppression-watching-for-and-managing-side-effects
What has your doctor said about the cramps? Has there been any change in your medications? Have the stomach cramps started recently?

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Thanks @rosemary

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@contentandwell

@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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Thanks. What is the name of the medication it was prescribed to you for purpura?

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Thank you for starting this discussion! Has anyone had severe bone and joint pain from the Tacrolimus? If so, did it go away on its own or did you get treatment? I’m pretty sleep deprived from waking up with throbbing legs and feet.

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@gphetteplace

Thank you for starting this discussion! Has anyone had severe bone and joint pain from the Tacrolimus? If so, did it go away on its own or did you get treatment? I’m pretty sleep deprived from waking up with throbbing legs and feet.

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@gphetteplace Hi I do get a sharp pain once in a while in my lower calfs, if I stand on it it goes away in just a few seconds. Very strange but it works.
Blessings
Dana

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@gphetteplace

Thank you for starting this discussion! Has anyone had severe bone and joint pain from the Tacrolimus? If so, did it go away on its own or did you get treatment? I’m pretty sleep deprived from waking up with throbbing legs and feet.

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Hi, I came into this discussion a little late. Hopefully by now you’ve gotten some relief from the bone and joint pain…and some sleep! While I I didn’t have a liver transplant, I did receive a bone marrow transplant. We share many of the same anti rejection meds. Tacrolimus being one of them. That medication, along with a few others, are known to deplete our bodies of magnesium fairly quickly. I have to take supplements daily to maintain a normal level. A low level can produce similar symptoms along with myriad other issues. Do you have routine blood draws frequently? If so, maybe mention to your physician to add a mag level to your next labs. The level should be 1.7 or higher. Best of luck to you! Lori

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@gphetteplace

Thank you for starting this discussion! Has anyone had severe bone and joint pain from the Tacrolimus? If so, did it go away on its own or did you get treatment? I’m pretty sleep deprived from waking up with throbbing legs and feet.

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I have pretty severe muscle and joint pain, particularly in my back, neck, and hands. My legs get very stiff when I get up from sitting and lying down. It’s worse after walking, standing for more than an hour or so, and sitting at my computer. I have read all about Tacrolimus and had assumed it was that. Since I’m five months out and it is continuing to get worse my doctor wants to eliminate other possible causes. So, since I’m quite underweight I’m getting a bone density scan to check if I have osteoporosis. Next may be a neurologist, as I also have worsening tremors and numbness in my leg.

Re: pain and sleep, have you tried melatonin? Chamomile tea, kava, and similar herbal sleep remedies can interfere with Tacrolimus, so best to avoid. I take 1 or 2, 100 mg caps (the lowest dose) of gabapentin at night. It doesn’t help with pain other than nerve related (so it helps with liver pain), but it is relaxing and really helps me to sleep. It isn’t metabolized by the liver, so doesn’t interfere with Tacrolimus. I hope you can at least find sleep soon…it’s so important for healing and wellbeing.

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@athenalee

I have pretty severe muscle and joint pain, particularly in my back, neck, and hands. My legs get very stiff when I get up from sitting and lying down. It’s worse after walking, standing for more than an hour or so, and sitting at my computer. I have read all about Tacrolimus and had assumed it was that. Since I’m five months out and it is continuing to get worse my doctor wants to eliminate other possible causes. So, since I’m quite underweight I’m getting a bone density scan to check if I have osteoporosis. Next may be a neurologist, as I also have worsening tremors and numbness in my leg.

Re: pain and sleep, have you tried melatonin? Chamomile tea, kava, and similar herbal sleep remedies can interfere with Tacrolimus, so best to avoid. I take 1 or 2, 100 mg caps (the lowest dose) of gabapentin at night. It doesn’t help with pain other than nerve related (so it helps with liver pain), but it is relaxing and really helps me to sleep. It isn’t metabolized by the liver, so doesn’t interfere with Tacrolimus. I hope you can at least find sleep soon…it’s so important for healing and wellbeing.

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The fifth doctor I saw tried prednisone (unsuccessfully) and ordered a knee MRI. They found I have bone marrow edema, consistent with calcineurin inhibitor pain syndrome (CIPS). I’m already on a low dose of Tacrolimus, so right now they’re managing the pain with Gabapentin. I’m up to 300 mg at night, but 100 mg is enough during the day. My symptoms are similar to yours. It started in my knees and hips, and within a few months all my joints were affected. If I sit too long I can barely stand up. I’ve found stretching and low impact exercises help immensely. If I don’t stay on top of it my muscles tighten and the pain is worse. At least with the meds I’m sleeping! Thank you for the well wishes. I hope you are better soon. Does the gabapentin help the numbness? I know it’s used to treat neuropathy.

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@loribmt

Hi, I came into this discussion a little late. Hopefully by now you’ve gotten some relief from the bone and joint pain…and some sleep! While I I didn’t have a liver transplant, I did receive a bone marrow transplant. We share many of the same anti rejection meds. Tacrolimus being one of them. That medication, along with a few others, are known to deplete our bodies of magnesium fairly quickly. I have to take supplements daily to maintain a normal level. A low level can produce similar symptoms along with myriad other issues. Do you have routine blood draws frequently? If so, maybe mention to your physician to add a mag level to your next labs. The level should be 1.7 or higher. Best of luck to you! Lori

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That’s a good idea. Thank you! My one year check up is next month. I’ll add it to my list of questions. 🙂

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@livertrex

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

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Wow! I didn’t know that was possible!

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@gphetteplace

The fifth doctor I saw tried prednisone (unsuccessfully) and ordered a knee MRI. They found I have bone marrow edema, consistent with calcineurin inhibitor pain syndrome (CIPS). I’m already on a low dose of Tacrolimus, so right now they’re managing the pain with Gabapentin. I’m up to 300 mg at night, but 100 mg is enough during the day. My symptoms are similar to yours. It started in my knees and hips, and within a few months all my joints were affected. If I sit too long I can barely stand up. I’ve found stretching and low impact exercises help immensely. If I don’t stay on top of it my muscles tighten and the pain is worse. At least with the meds I’m sleeping! Thank you for the well wishes. I hope you are better soon. Does the gabapentin help the numbness? I know it’s used to treat neuropathy.

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Thank you for your insights. I did research on CIPS and added to my files to discuss with my doctor. Gabapentin doesn’t seem to work on the leg numbness, but I was having sharp nerve pain in my leg which has stopped. I have been doing stretches and qigong most days and walk when weather permits. They tried to reduce my Tacrolimus dose, but my enzymes shot up so I had to go back to the level I started on. I’m hopeful I’ll be able to reduce before my hair all falls out! I wish you greater success at managing CIPS.

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@athenalee

Here are two articles I found very insightful.

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@athenalee I don't have time to read these now but they sound very interesting. I definitely plan to return later to read them.
JK

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