How do you take your immunosuppressive m... - Kidney Transplant

Kidney Transplant

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How do you take your immunosuppressive meds?

Dna4christ profile image
71 Replies

Hi everyone. I'm wondering how everyone else take their medicines such as tacrolimus or cyclosporine..siroliumus etc? Do you take yours with an empty stomach or with food? I take 2mg tacrolimus and it has to be on an empty stomach 3 hrs before taking it and 1 hr after. Then, I can eat again. Just curious to how others do it at their transplant centers. And, whats your creatinine level? Thank you!!

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Dna4christ
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71 Replies
Lifechanger1 profile image
Lifechanger1

I take on empty stomach. My transplant was done on 6/2/2020 and current creatinine level is 1.03! Very successful surgery!

Dna4christ profile image
Dna4christ in reply toLifechanger1

Congrats!! Thats awesome!

LisaSnow profile image
LisaSnow

I take Sirolimus with food and tacrolimus without food. Sometimes I do eat when I shouldn’t with tacrolimus but it is better still than not taking it. Never missed a day.

Dna4christ profile image
Dna4christ in reply toLisaSnow

Oh i see..i never missed a dose but have ate snacked within the none eating time frame..hungry :(

LisaSnow profile image
LisaSnow in reply toDna4christ

I know I love food too much it is so hard!

Dara3351 profile image
Dara3351

I take my meds at 8:00 am and 8:00 pm. I take them on an empty stomach and follow with breakfast usually 30. Minutes later.

Mycophenalate 750 mg (3 capsules)

Tacrolimas 1 mg

Carvedilol 12.5 (blood pressure)

Levothyroxin 25 mg (thyroid medication)

Vitamin D3 ( am only once a week)

Magnesium 241.3 mg ( am only)

Famotidine 20 mg ( am only)

The only difference in the 8:00 pm medications is I take

Tacrolimus 1.5 mg

After a year and a half post transplant my creatinine is. .8

Dna4christ profile image
Dna4christ in reply toDara3351

Thank you. Your creatinine is looking fabulous!

Lionkin profile image
Lionkin in reply toDara3351

Dara3351, Can you share how much vitamin D3 IU you are taking (once a week) & what was your test reading prior to taking Vitamin D3. (my current level is 24 ng/dl and how long...Thanks.

Dara3351 profile image
Dara3351 in reply toLionkin

My Vitamin D3 is a prescription 50,000 percent units once a week.

Lionkin profile image
Lionkin in reply toDara3351

Thanks - has your inactive Vitamin D 25 improved...will be thankful if you share that info.

Dara3351 profile image
Dara3351 in reply toLionkin

My Vitamin D is in the normal range because of the prescription I take once a week. It’s not advisable to stay in the sun as I don’t want to get skin cancer.

1transplant profile image
1transplant in reply toDara3351

I also take my meds at 8am and 8pm on empty stomach. I take tacrolimus, and microphenolate twice a day, sirolimus once a day. Then I take Coreg-CR, Amlodipine, Losartin, Vit. D, Omerprazole and Synthroid once a day. I also take Bactrim three times a week.

Usually without food. I take 5mg of prednisone every other day and cellcept 250mg at night after dinner. My creatine usually runs at 1.0 until lately went up to 1.7 and am having labs again this Wednesday to test again. Something is up.

Dna4christ profile image
Dna4christ in reply to

I hope nothing is wrong and it's just one of off days! :) you don't take any other immuno like tacro or cyclosporine?

in reply toDna4christ

No. Just the prednisone and cellcept.

Dna4christ profile image
Dna4christ in reply to

wow thats awesome! I never heard of that one.. did hear someone from here not being on any immunosupressants. So lucky hahaha

LisaSnow profile image
LisaSnow in reply to

You are 38 years out from your transplant? Your body must see the transplanted kidney as it's own now. Congratulations.

in reply toLisaSnow

I hope so. I am going for labs today.

chicago17 profile image
chicago17

I had my transplant in dec 2018 I live in the u.k I was never told to take any of my tablets on a empty stomach I take all of them after breakfast which is around 8.30 am and the same for night time dose .I take tacrolimos. Mycophenolate. Prednisone. Lansoprozole. Metformin 7 tablets in all and I've always been ok .

Dna4christ profile image
Dna4christ in reply tochicago17

oh okay. Thank you. I'm in California and from my transplant center, its mandatory pretty much but only for tacrolimus I think. They said it interacts with the food and lowers its potency.

chicago17 profile image
chicago17 in reply toDna4christ

No never been told that when I go for bloods I'm told nor to take tacrolimos until after bloods done because they get a false reading if I take it

LisaSnow profile image
LisaSnow in reply tochicago17

The reason most of us were told to take tacrolimus without food is because food can interfere with metabolism of the drug hence lowering AUC of it (the total amount of drug your body utilizes within 24 hours). If you are doing OK taking it with food this long, then it is OK. Everyone is different.

On the other hand, not taking the drug before blood draw is because they need to monitor the trough level (the lowest concentration reached by a drug before the next dose is taken) to make sure the dose proscribe for you is sufficient.

chicago17 profile image
chicago17 in reply toLisaSnow

Yes that's correct & yes I'm doing fine how I'm taking my medication and yes everyone is different of course . Things are probably different in the u.k also .

Mary928 profile image
Mary928 in reply toLisaSnow

I 3 years post transplant and have always taken meds with food. I was told to do so by transplant dietician. My l labs are goid

Tri4life profile image
Tri4life in reply toDna4christ

Hi. I’m from California. I had my transplant in 2015. I was told to take my meds at 8 -8. I have always taken with food. I was told to either take with OR without food. I chose with food. I do not alternate. It is always with food.

Dna4christ profile image
Dna4christ in reply toTri4life

Thats good. I asked recently why we have to take our tacrolimus without food and thr doc said that it gives maximum absorption especially important in the morning. :)

Mgt8 profile image
Mgt8 in reply tochicago17

Hi, me too...

Nearly 3 years post transplant.

I always take my meds after food....

On 6mg of tacro twice a day and have regular tests so its clearly working ok.

I do have a sensitive stomach so think it's right for me.

Interesting thread thanks for the comments guys..

Mgt

chicago17 profile image
chicago17 in reply toMgt8

Yes I have a sensitive tummy to and if I take tacrolimos on a empty tummy I'm on the toilet for the rest of the day I take 3mg twice daily

Dna4christ profile image
Dna4christ in reply tochicago17

I have sensitive stomach too ..they recommended famotidine for that.. just more meds..i should try asking my transplant center! Thanks guys!

Cazzy41 profile image
Cazzy41

I always take my Adoport (Tacro) on an empty stomach. I was on 3.5mg but it has recently been lowered to 3mg to help me fight the BK virus. An hour after that I have something to eat then it take my prednisone. My last creatinine was 2.09 but I have just had more bloods to recheck the levels

Dna4christ profile image
Dna4christ in reply toCazzy41

Oh yes! Thats what I do. Best wishes fighting against the BK virus. I remember always getting tested for those.

Dna4christ profile image
Dna4christ in reply toCazzy41

oh by the way, is an empty stomach mandatory or your preference??

chavabam7 profile image
chavabam7

My doc said it doesn't matter empty or not but stick to same regime.

Dna4christ profile image
Dna4christ in reply tochavabam7

Yes! Thats what my primary Neohrologist has told me but I've been brainwashed so much at my transplant center about tacro on empty stomach that I'm afraid of doing it otherwise haha

DexterLab profile image
DexterLab

I take mine with breakfast and dinner. Docs said food helps keep the stomach upset down. Down to 2 mg tacro and 500 mg CellCept twice a day. Most important is to find a schedule/process that works for you so you don't miss doses.

Dna4christ profile image
Dna4christ in reply toDexterLab

When I was little, those were my protocols. My transplant center is very strict with the empty stomach rule. They drill me everytime and ask me everytime :)

Tri4life profile image
Tri4life in reply toDna4christ

Where did you get your transplant at

MKlug2015 profile image
MKlug2015

My transplant nephrologist said that consistency when taking my immunosuppressive meds is important. For my body, I discovered taking the meds on an empty stomach gave me lots of nausea. So I eat breakfast about an hour before my 9am meds. No nausea that way. With kidney transplant joy and thankfulness, Margo

Dna4christ profile image
Dna4christ in reply toMKlug2015

blessings! Very grateful for our kidney transplants!!! :)

WYOAnne profile image
WYOAnneNKF Ambassador

I had my transplant in 1999, so it's been over 20 years! I had a lot of GI problems the first couple of years so the transplant team had me take them with food. I take 360 mg Myfortic and 75 mg of Neoral. Did take prednisone till year 5. My creatinine is a steady 0.8-0.9.

My team had told me that the most important thing is to take them and about 12 hours apart to be effective. So, to this day I still take my morning dose with breakfast and take evening dose with a snack.

Dna4christ profile image
Dna4christ in reply toWYOAnne

Awesome!! You never had any problems with your creatinine going up?? Rejection episode? My baseline has been 1.5ish for 5-6 years now. Doc says as long as it doesn't go over 2 and stays like this..forever! 😆

WYOAnne profile image
WYOAnneNKF Ambassador in reply toDna4christ

The first 2 years I had 2 kidney biopsies due to creatinine at 1.5 and then 1.8. But no rejection and settled down to where it is right now 0.8 - 0.9. With time, if your transplant team agrees, you could take all your meds at the same time with food. Or take the one when you get up and the rest when you sit down to breakfast. There are a lot of ways you can work it out.

Different transplant centers seem to use different combinations of immunosuppressants. I don't take tacro, but I do take Myfortic (name brand mycophenolate) and Neoral (name brand cyclosporine).

Dna4christ profile image
Dna4christ in reply toWYOAnne

Yes I'm wondering the mechanics behind the different immunosuppressants. As a kid, I've tried all sorts of immuno- cyclo, neoral, sirolimus..until they settled me with tacrolimus+cellcept. They did wean me off of prednisone back then. Also, didn't matter if I took it with or without food just time specific. For my 2nd transplant, I started off with tacro - pred and cellcept (pregnancy reasons got off of this one). They particularly stress empty stomach and doesn't matter what time I take the meds. Truly, everywhere is different. I'm going to ask about taking diff meds but I don't have any side effects with my current regime.. :)

WYOAnne profile image
WYOAnneNKF Ambassador in reply toDna4christ

My immunosuppressants are Name Brand. Even generic are suppose to be the same, there is usually a little something different in them. At least that's what a pharmacist told me. My mail order pharmacy a couple of years ago, decided to send me generic instead of name brand. After about 10 days of mycophenolate, I had diarrhea. Talked to my pharmacist and nephrologist about it. From now on my nephrologist specifies Name Brand ONLY... and all is well!

Dna4christ profile image
Dna4christ in reply toWYOAnne

Yes, I think I agree with you but so far, I'm doing okay with it. I wonder if Prograf (tacro) is covered by my insurance. Thats what I took for my 1st transplant. :) Always a battle hahaha

Lionkin profile image
Lionkin in reply toWYOAnne

Hello, I am curious - did you take Myfortic on day 1, as I am taking Mycophenolate at times I have had discussions to switch over to Myfortic as it is less toxic to the stomach.... any information will be appreciated...Thanks.

WYOAnne profile image
WYOAnneNKF Ambassador in reply toLionkin

Actually I was in the study where Myfortic was being tested when I had my transplant. It was a double-blind study so did not find out what I was on at first. I found out later I was taking Mycophenolate and had horrible diarrhea the whole time. After 6 months I was put on the Study drug, which became when released by the FDA as Myfortic. Pharmacists have told me that generics sometimes are just a little bit different from name brand....sometimes the coloring in the tab, etc.

Every time the doctors' would switch me back to Mycophenolate, after about 10 days the diarrhea would come back. So early on when renewing my RX they would specify name brand only. So, to this day I take name brand only Myfortic and Neoral.

Talk to your doctor about switching to name brand. See if it makes a difference for you. You usually have to be taking the name brand about 1-2 weeks before you notice any difference.

Lionkin profile image
Lionkin in reply toWYOAnne

Thanks, valuable input, last Q, how long have you been on it....Stay Safe !

WYOAnne profile image
WYOAnneNKF Ambassador in reply toLionkin

I have been on name brand since the 6 month mark, except briefly when my insurance tried to give me generic. So, it's been over 20 years.

Name brand vs generic made a big difference for me.

You too, stay Safe!

Lionkin profile image
Lionkin in reply toWYOAnne

Thanks Much, valuable input... eliminates my "mistrust the obvious phenomena" (my Xplant was out of state great team in CA ..and now local doctors ..who are in slightly different world ).some times I can't help but ask...Stay Safe.

WYOAnne profile image
WYOAnneNKF Ambassador in reply toLionkin

My transplant was at U of WI, back when we were still living in Wisconsin. Now live in Wyoming, where there is NO transplant center. Thought I would have to go to U of CO for transplant care....but have a great team of nephrologists here in Casper. Who would have thought?#$@

Lionkin profile image
Lionkin in reply toWYOAnne

Sometimes we all need to get a bit lucky, (I could never believe my wife's kidney was a match.. She is not related to me at all genetically speaking !) Take's me back in time when I was 24 yrs an elderly gentleman a friend of mine alway told be "stay lucky" and never said have a nice day... but now after the transplant I appreciate that more.

Regards & Stay Safe.

Dna4christ profile image
Dna4christ in reply toWYOAnne

I have heard that tacro can increase your creatinine.. i wonder if my creatinine will decrease if I take some other immuno- neoral..?

Sparta300 profile image
Sparta300

That seems the rule of thumb now tarolimus extended release . I set my alarm to seven take the tac.... then at eight I take the rest of my prescriptions while I eat breakfast. Repeat at 8 PM . Hope that helps.

Dna4christ profile image
Dna4christ in reply toSparta300

oh i see. Yes, thank you! :)

Lionkin profile image
Lionkin

My transplant center recommended that I eat before taking Tacro/Myco, 8am/8pm. Transplant done on 7/20... Creatinine 1.01, so far so Good !

Lionkin profile image
Lionkin in reply toLionkin

7/20/19

Dna4christ profile image
Dna4christ in reply toLionkin

awesome!!!

Lulabelle70 profile image
Lulabelle70

I’m in the uk, never been told to take tacrolimus on an empty stomach, I take mine then have breakfast more or less straight away, at night I take them 2-3 hours after my main meal, but will normally of nibbled something after!

Dna4christ profile image
Dna4christ in reply toLulabelle70

Aw, that's nice. I wish I started off that way as well. Its hard to wait sometimes haha

Balap profile image
Balap

I take tacro and mycophenolate at 8am, then take food 1 hour later, this way more drug is absorbed into the body.

Dna4christ profile image
Dna4christ in reply toBalap

yes thats what my doctors have told me as well!!! Best wishes~

March-31-09 profile image
March-31-09

I’m 11 years post. I take my meds 12 hours apart. Definitely not to the exact minute. My creatinine runs from 1.4 to 1.7

Dna4christ profile image
Dna4christ in reply toMarch-31-09

Same here!

Ynnep profile image
Ynnep

I was instructed to take within an hour of eating to prevent stomach issues.

morwebber4me profile image
morwebber4me

I take mine immediately after breakfast and dinner otherwise I get stomach issues.

anne627 profile image
anne627

I take Gengraf, 75 mg. in the morning and 50 mg. at night, Mycophenolate 500 and Mycophenolate 250 morning and at night, and Prednisone 5 mg. every day. I take them with food at 9 AM and PM. I am lucky and grateful to have a kidney from a deceased donor for 26 years. I take generics and insist on the same brands every time.

Dna4christ profile image
Dna4christ in reply toanne627

Awesome!

anne627 profile image
anne627 in reply toDna4christ

Thanks!

cmroz1967 profile image
cmroz1967

I have to take mine with food in my stomach. I had such stomach pains when trying to take it on an empty stomach. I also take Nexium to keep my stomach from getting upset or painful. My creatinine level is 1.1 to 1.2.

Dna4christ profile image
Dna4christ in reply tocmroz1967

Hi, yes I had bad stomachache too and had to take famotidine until my dad told me an article on how taking stomach meds will actually make it worse and the body becomes dependent on them- making less acid in our stomachs. Since then, i stopped taking famotidine(pepcid) which made my stomach stronger. I no longer have pains on taking meds on empty stomachs. :) long happy kidney!

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