1. < Transplants

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.

myfablife | @myfablife | Jan 3 4:42pm
In reply to @mollyv "@myfablife Im on Prograf - and have been since my kidney transplant - and had been..." + (show)
@mollyv

@myfablife Im on Prograf - and have been since my kidney transplant - and had been on Imuran until this switch to Myfortic. At the time that they changed me to Myfortic, I also doubled my dose of amalodipine for blood pressure. Turns out the amalodipine was causing the swelling, etc. I have gone back to my old dosage and am hoping this will get me back to normal - whatever that is!

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Hi how much do u take of your myfortic Prograf. after 11 years😊

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 4 8:02pm
In reply to @janni1 "I am 2yrs post liver transplant on 13/14th January...overnight surgery. Am now waiting for a kidney..." + (show)
@janni1

I am 2yrs post liver transplant on 13/14th January...overnight surgery.
Am now waiting for a kidney transplant.

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@janni1, Overnight surgery... that is interesting (and probably confusing). So, which date is in your transplant records? I never thought about overnight procedure. Mine was complete before midnight. Janni1, I like to suggest that patients honor their transplant anniversary date and I do hope that you will be feeling well enough to take a moment to relax and enjoy a peaceful moment.
I had a simultaneous liver and kidney transplant 1n 2009 at mayo Rochester, and i was very 'sick' and on dialysis before my transplant. I honestly don't know which symptoms were related to liver failure, and which were related to acute kidney failure. I hope that yoy feel better than I did.❤️
How are you feeling as you wait for your kidney transplant? Are you needing dialysis?

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beracha | @beracha | Jan 5 4:22am

Hi. I see ur post is older, are u doing ok with meds? I started on tacrolimus and have been as high as level was 13. I felt terrible. It was raised and lowered according to my numbers. Yes. Same side effects. I take imitrex for migraines, Zofran for nausea, med for vertigo,etc. Unfortunately we cannot be non compliant with our meds. I do have meds for my side effects. Hair loss is just about driving me crazy. I am starting a hair clinic at my dermatologist. Feel free to ask me anything. Good luck.

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blbird33 | @blbird33 | Jan 5 2:20pm

Beracha, thank you for the info. I am a year post transplant and still dealing with tacro med ups and downs. And it greatly increased my anxiety. I am now at 2.25mg with levels at 5.6 and I do not want to go any higher in dose. I am also asking to talk with the CPMC psychiatrist to find a med that is ok for my kidney and good to reduce anxiety and depression that have come on since the surgery. Anyone else on anti-anxiety or anti-depressants since the surgery? Which meds are recommended? Hope you feel better and stabilize soon. I have lost hair too and it remains thin. I think my life is just different since the surgery and God is taking care of it all for my new life. I trust God and have deepened my faith to get me through and be grateful. Take care, BB

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Dik Glass , liver transplt 8/4/11 | @dglass4040 | Jan 5 5:16pm
In reply to @estrada53 "Hi Rosemary, Congratulations on your transplantversary! And thank you for all of your thoughtful responses on..." + (show)
@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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Dear Estrada,
Talk to your docs , Tacrolimus
Had the same effects on my kidneys and creatinine #’s
They agreed to switch me to
Everolimus which is prescribed for kidney Transplants…… good news, my GFR # held steady, my kidney numbers were/are fine’. &
Creatinine #’s are steady.

Ps , I was told to never do gardening due to the possible
Fungal Diseases | Fungal | CDC
Valley Fever (Coccidioidomycosis) Valley fever, also called coccidioidomycosis, is an infection caused by the fungus Coccidioides. The fungus is known to live in the soil in the different areas in the USA
There are tests for it

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Dik Glass , liver transplt 8/4/11 | @dglass4040 | Jan 5 5:19pm
In reply to @myfablife "Hi how much do u take of your myfortic Prograf. after 11 years😊" + (show)
@myfablife

Hi how much do u take of your myfortic Prograf. after 11 years😊

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I take none , I got my mayo doctor to move me to
Everolimus, which was a great result

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jmp1234 | @jmp1234 | Jan 6 11:03am

I am still waiting to finish last of my pre testing. Cardiograph in 2 weeks and all done. If 70 or below I was told immediate spot on waiting list for the new liver. No post op experience here, but I hope to get my medical cannabis back from legal and licensed dispensary.

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gap | @gerryp | Jan 7 7:54am
In reply to @dglass4040 "I take none , I got my mayo doctor to move me to Everolimus, which was..." + (show)
@dglass4040

I take none , I got my mayo doctor to move me to
Everolimus, which was a great result

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Good morning. I am just about 2 years post liver transplant - and have CKD stage 2. How long were you on Tacrolimus before they changed you to Everolimus? Are you treated at Mayo or some other hospital? My creatinine numbers are OK, but GFR is in the 60’s. I have been trying to get my Mayo team to reduce my tacrolimus dosage as I don’t want a kidney transplant in my future. I currently take 2mg twice a day and my blood level trough is in the 4-6 range. Thx for your help & experience as a 11+ year survivor.

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krsti | @krsti | Jan 7 9:16am
In reply to @jmp1234 "I am still waiting to finish last of my pre testing. Cardiograph in 2 weeks and..." + (show)
@jmp1234

I am still waiting to finish last of my pre testing. Cardiograph in 2 weeks and all done. If 70 or below I was told immediate spot on waiting list for the new liver. No post op experience here, but I hope to get my medical cannabis back from legal and licensed dispensary.

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From what I was told, the cannabis interferes with the Tacrolimus. Since it's your anti-rejection drug, I wouldn't mess with it... Best of luck though and good luck on the list!

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krsti | @krsti | Jan 7 9:20am
In reply to @blbird33 "Beracha, thank you for the info. I am a year post transplant and still dealing with..." + (show)
@blbird33

Beracha, thank you for the info. I am a year post transplant and still dealing with tacro med ups and downs. And it greatly increased my anxiety. I am now at 2.25mg with levels at 5.6 and I do not want to go any higher in dose. I am also asking to talk with the CPMC psychiatrist to find a med that is ok for my kidney and good to reduce anxiety and depression that have come on since the surgery. Anyone else on anti-anxiety or anti-depressants since the surgery? Which meds are recommended? Hope you feel better and stabilize soon. I have lost hair too and it remains thin. I think my life is just different since the surgery and God is taking care of it all for my new life. I trust God and have deepened my faith to get me through and be grateful. Take care, BB

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Hey there blbird33! I take Citalopram for depression, and it melds just great with all of our other meds. I am post liver transplant about 18 months . Good luck! I have also had a suggestion of Holy Basil tea, but I haven't tried that yet. Word from the Mayo was that it should be ok, but if it starts to affect the tacro levels, then it's a no go. Hope this helps!

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