Tacro /adoport toxicity

[PostivelyJo]

Hi,

I take 5 mg prednisolone and 250mg MMF at around 7.00 after breakfast and 6mg Tacro at 9.0 am.

Around 11.00 am I’m wiped out, interval shakes and trembles ... nearly 1 year post transplant . This is a recent thing and I’ve just had Tacro reduced from 7mg to 6mg in last month.

Any suggestions ? I take Tacro 2 hours after eating and then feel starving but can’t eat for an hour as per instructions ....

Funny that night time isn’t a problem ! Although I wake at same time each night I assume to do with timing of evening meds ?

Do you think it’s Prednisolone or Tacro or both ? What about taking with food to lessen the toxic hit at 11.00am Has anyone similar experience or had advice ?

All very very good otherwise .

Many thanks.

Jo

[LisaSnow]

A lot of factors affect our energy, it is unlikely to be the prednisolone though because steroids gives energy, not zapping it. In my experience tacrolimus and MMF don't affect energy level either, however，transplant itself IS very much a shock to the body and fatigue can be a sign that your body needs more nutrients and physical activities. Have you tried eating a bigger breakfast to see if it helps?

[PostivelyJo in reply to LisaSnow]

That’s a very good point . Thanks Lisa. It may well be nutrition and I know exercise is important. My body is still recovering and I’m nearly at the end of a toxic divorce . The stress of which has not helped at all. Knowing it may not be drugs has really helped because I can attend to the other issues , Drugs are a little more complicated. That has given me a BOOST

X

Jo

[LisaSnow in reply to PostivelyJo]

So sorry to hear about the stress of a divorce. Stress, psychological and emotional ones, probably have a bigger impact on our physical energy than the actual physical stress (like muscle hurting from exercising incorrectly). I hope you have a good support system to help you overcome this difficult time. Be well.

[PostivelyJo in reply to LisaSnow]

I do have a good support network . I think you are right about the stress impacting. There has been Covid too ...... this journey is complex isn’t it. But when you stop and think about how lucky we all are !

Thanks for the support . It’s really helped x

[mhawk]

Good to hear you share your challenges. I began taking my Cellcept and Tacro together in the am at least one hour and half before eating twice a day and began feeling better. Only on Tacro 3mg daily since my blood count and levels needed to be stabilized. Are you taking any vitamins to supplement yourself?

[PostivelyJo in reply to mhawk]

I was wondering if I should take Vit D/ Alpha Calicidol. I take zinc and biotin for hair and skin

[mhawk in reply to PostivelyJo]

YES YESYES.......Just do not take with your immunosuppressive medications.

[LisaSnow in reply to mhawk]

Do you know why that's a problem? I take all my pills together.

[daxielovinglady in reply to mhawk]

Please check with your Renal Team before administering your own medication !

[PostivelyJo in reply to daxielovinglady]

Always do.

[daxielovinglady in reply to PostivelyJo]

Oh that's good , email was merely a precaution . Take care & stay strong Jjjj. X

[PostivelyJo in reply to daxielovinglady]

And always worth reminding. Thank you. It just underlines that we most conscious all the time whilst living normally

[DexterLab]

I am on tacro and CellCept, but my docs have me take them with my meals. I have been ok the whole time (transplant Feb 2019) and am taking a lower dose now. Ask if you can take your meds with food.

[PostivelyJo in reply to DexterLab]

Thank you for your reply and glad things are good. I think this is good advice

[Transplant314]

I am 18 months post. I have taken my meds with food since the beginning. I find myself tired on some days usually in the afternoon

[PostivelyJo]

I think taking with food might be the solution . I did it in the beginning. Drs were fine about it, they worried more that it was taken at the same.

[John-Sammy]

~ I would be inclined to say it is the Tacro , especially in the form of Adoport.

I was transplanted 4+ years ago (January 2016) & on prednisolone , MMF , tacro/prograf , and ranitidine .

My MMF had to be stopped 2 years back , when my immune system totally crashed . . . ; & I haven't taken since.

At that time the improvement in my health was great

In January this year (2020) prograf was changed to adoport , also renitidine changed to Lansoprazole

I feel the Adoport is causing me the distress that you describe , and Lansoprazole causing profound itching . . . .

My consultant just shakes her head . . . . . it's as though my absence of perfect health is an offence to her .

It is hard to be sure what causes what.

I should say: 12 weeks after transplant (6+ years ago) I felt wonderful , walking 3 miles a day.

Now i feel like the not-even-walking dead. I'm sure it is the uncalled for changes .(government stupidity & gross incompetence ~ utter contempt)

Obviously no changes should be made without the approval of one's consultant

Though it is sorely tempting .

I hope things will improve for you . . .

Keep insisting that your consultant takes responsibility !

~ John ~

[PostivelyJo in reply to John-Sammy]

So you were feeling good before the change from prograf to adoport? Are you NHS ? Adoport is the cheaper option I believe. I changed from ranitidine to omeprazole and felt instant improvement !

What was their reason for changing meds ?

MMF was removed for 6 months from my regime due to severe neutropenia which is now corrected .... ( but god how long)

I’m a year on 20th September and the last 4 months have been really challenging. My body responding in different ways to the drugs suddenly . My hair was falling out now it’s suddenly stopped ! The one good thing !

[John-Sammy]

No , not so good for a long time. There have been a number problems .

It's just the exhaustion seemed to much increase after the change to adoport . The reason was unclear . It seemed there was a reluctance to say

Ranitidine became unavailable .

Yes , NHS .

I'm guessing 'Omeprazole' may be similar to 'Lansoprazole' ~ ?

[PostivelyJo in reply to John-Sammy]

Ranitidine is no longer available due to cancer scares I believe. I would ask them why they changed you to adoport and say you feel less well on it. ?

[ashok5085]

Trembling and shaking is due to tacrolimus. Consult your doctor if you can reduce the dose.

[Tahmed251]

You might be low in certain minerals or vitamins. A lot of transplant patients have low magnesium or low in vitamin d. You can do a blood test check the levels. Hope this helps.

[Norken]

Hi Jo. I had terrible shakes and trembling while on Prograf 2x a day. I could barely hold a pen and write my name. It was sad. At first the docs reduced my dosage but that didn't really help. My docs then switched me to Envarsus once a day and it's been a Godsend. My insurance put up a fight at first, but it was finally approved. I take my meds around 10:00 am usually on a empty stomach and don't eat until late lunchtime and feel pretty good. I am not as hungry on Envarsus too (which is a plus). I have many other issues with my kidney, but thankfully the shakes have been ratified. Good luck.