Prednisolone, can it be down to 3/4 of 5mg? - Kidney Transplant

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Prednisolone, can it be down to 3/4 of 5mg?

Lily2019 profile image
28 Replies

Hi! So I'm kidney transplant patient on my 11th year. I have some hormonal issues and my doctor said I should reduce my Prednisolone from 1 tab morning of 5mg to 3/4 of tab. I'm hesitating. What's your experience?

(Normal scheme for me: 1 tab Prednisolone at morning, 1mg Prograf morning and evening, 500mg Cellcept morning and evening)

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Lily2019
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28 Replies
LisaSnow profile image
LisaSnow

Ask for a prescription of 1mg and take 4 a day.

Lily2019 profile image
Lily2019 in reply toLisaSnow

Hi! Thank you for you reply. My last dosage few years back was 1.5mg/a day, then after some hormonal tests and stuff my doctor reduced it to 1mg/day. She says now I need to take 3/4 of 5mg. But you're saying 4 tabs/day?? Why?

Lily2019 profile image
Lily2019 in reply toLisaSnow

Sorry I've misread. Got your point! Thank you!!!

PostivelyJo profile image
PostivelyJo

Yes Lisa is right . I’m tapering off it now and take 4 x 1mg.

Lily2019 profile image
Lily2019 in reply toPostivelyJo

Hi! Thank you for you reply. Exactly what's the reasoning for increasing dosage 4 fold?

PostivelyJo profile image
PostivelyJo

I was on 5mg daily I’m now tapering my dose by 1 mg a month . So I get it in 1mg tabs instead of 5 . It’s easier than breaking up a 5mg tab which it sounds like your Dr suggested ?I have been told to taper Prednisone slowly as after a few years on it the Adrenal gland can take a while to wake up and in some cases it doesn’t return to full function. So 1mg pills are an accurate way of reducing the dose .

Lily2019 profile image
Lily2019 in reply toPostivelyJo

So, there is no fear of reducing it below 5mg?

LisaSnow profile image
LisaSnow in reply toLily2019

There is always a risk when you reduce your anti rejection medication. This is why you will need to repeat your labwork regularly.

PostivelyJo profile image
PostivelyJo

I am reducing it by 1 mg a month following a long discussion with my team and close monitoring . . Currently on 4 mg and have been advised to take it slowly , reducing it by 1 mg a month.Reduction can increase creatinine levels … if there is a significant increase I will likely be told to stop.

The other issue is wether the adrenal glands responds and wakes up … side affects might be exhaustion, loss of appetite etc ( look up adrenal crisis, adrenal exhaustion/ fatigue etc )I have experienced some tiredness although life has been hectic … blood tests next week will reveal any changes in creatinine and EGFR …

Lily2019 profile image
Lily2019 in reply toPostivelyJo

Unfortunately, no such thing as Prednisolone 1mg around me. So guess I'll have to split it. It's just now that you said about reduction by 1mg, and 3/4 of tab seems more like 1.25mg... now I'm kinda worried...

..Good luck on your blood tests next week! 🙏

LisaSnow profile image
LisaSnow in reply toLily2019

That's so strange that your pharmacy does not carry 1mg Prednisone. What country do you live?

PostivelyJo profile image
PostivelyJo

I would interpret what you’ve been told as discarding a 1/4and taking the remaining 3/4’s. If in any doubt, which seems the case (?) you should ask your team. Surprised you can’t get Pred in 1mg doses but it’s different everywhere which doesn’t help .

Lily2019 profile image
Lily2019 in reply toPostivelyJo

Well, no, the problem is not splitting. That's the easy part: you split it in half, then split one of the halves and discard half of it 😅 I'm much more concerned about that lowering the dosage would bring up my creatinine levels

PostivelyJo profile image
PostivelyJo

I think you should get back in touch with your renal team …

PostivelyJo profile image
PostivelyJo

I doubt that a reduction of1.25 will be more drastic than a reduction of 1 mg … I doubt you will feel any massive side effects either … or that Creatinine will be effected … i’m being monitored because I’m tapering off it completely - hopefully. I expect that when the dose is around 2/3 mg that there might be issues… still best to check… and ask for a blood test after a month ?

Lily2019 profile image
Lily2019 in reply toPostivelyJo

Thank you so much!!! I'll go for it then. And sure, blood test after month like usual. How do you manage to get off it? I've been given it for the most of my life, before the operation and after. Just dosage varied. As for team, it's kinda complicated - it was long time ago and in another country. Where I am now I have just this one doctor, she advises me all the time, insists on some excessive (I feel) tests, but you know how it is? It's always better to have second opinion, especially of people who know what you went through.

PostivelyJo profile image
PostivelyJo

I have an amazing team at top London Hospital . It’s quite incredible …. And it’s the good old NHS ! Some of the team pro tapering Pred others not … but they decided to give it a go with me … it may not work. I want to try to reduce meds where I can and kept pushing . There are risks to not taking it and there are risks taking it … but I want to give it a go.

Would it be wise to have the support if a renal team ? Your situation sounds unusual but also seems to be working .

You mentioned you had hormonal issues .. have you explored HRT or is this the wrong hormones ?

Lily2019 profile image
Lily2019 in reply toPostivelyJo

Wow! You're lucky to have such a great team!!! I envy you about it 🥰 And yes, it's my dream too to reduce amount of meds I'm taking. Not much of a team here, but like you said, so far it works.

About HRT, well, I was given some estrogen pills before few years because of inconsistent periods, but then Covid rose up and I kinda stopped visiting hospitals for some two years, with only occasional tests and consultations online. Now life's kinda getting back to rails, so I'm planning on visiting endocrinologist soon. We'll see how it goes 🤞

Eyak1971 profile image
Eyak1971

I had to come off of prednisone. So my doctor started with alternating 5 mg. And 2.5 mg. For 1 month. Then 2.5 mg for 1 month. Then alternating 2.5 mg every other day. After 3 months I will be tested for any rejection. Will keep you posted on how it goes. On my second month now. Have experienced joint pain and tiredness at times but may not be related to treatment. Take care and be sure to work closely with your doctor. Every patient varies.

Lily2019 profile image
Lily2019 in reply toEyak1971

Thank you for you reply! It would be nice to come off it, though I am afraid of potential rejection. I wish you good luck in your quest for better life! ❤️

EchoStorm profile image
EchoStorm in reply toLily2019

I decided to stop taking 5 mg a day and only take 2.5 mg now. I’ve been doing it for 4 months and I’m 7 months post transplant. I didn’t ask my team about it until a month ago and my labs look great! They are going to monitor me closely to make sure my numbers continue to do well. The 5 mg was just reeking havoc on me.

WYOAnne profile image
WYOAnneNKF Ambassador

I was able to get off Prednisone at the 5 year mark. I am 22+ years post transplant. I was originally on 7.5mg daily - and had 2.5 mg tabs. Every 2 weeks I decreased my dose by one tablet till I was off of them all together. My creatinine was never affected. Today my creatinine remains stable at 0.8 - 1.0

Lily2019 profile image
Lily2019 in reply toWYOAnne

That is so reassuring!!! Thank you so much!! ❤️🌹❤️🌹❤️

Will definitely discuss it with my doctor next visit.

Eyak1971 profile image
Eyak1971 in reply toWYOAnne

Question- how are prednisone intake and creatinine level related?

WYOAnne profile image
WYOAnneNKF Ambassador in reply toEyak1971

Prednisone is a steroid, so basically prevents your transplant from inflammation, that could lead to rejection. So, for some people - prednisone is a must. If you have a rejection episode, that is what the docs do - give you large doses of steroids. I was able to titrate my Pred dose till I was off of it. My transplant team kept checking my creatinine during this time because we didn't want any rejection (inflammation) to happen.

Eyak1971 profile image
Eyak1971 in reply toWYOAnne

Thanks for info.

AndrewT profile image
AndrewT

Dear Lily2019,

3/4 os 5 is 3.75....which is a VERY 'Strange' amount indeed. I might suggest that you ask for a Clearification, and of exactly, What is required,

I'm sure that youe Doctor who, after all you have known for years, won't Mind 'Chatting' About this. Why not give Him/ Her a call?

AndrewT

Lily2019 profile image
Lily2019 in reply toAndrewT

Dear AndrewT

I don't actually find it strange, since around me there is no Prednisolone 1mg and I am already on single 5mg tab, so taking half and quarter seems logical as far a tapering goes. I wouldn't be able to correctly split said pill into 4/5th to decrease from 5mg to 4mg - the pill is too small, and even precise scales I brought, aren't sensitive enough for such small weight.

Actually she reduced it when I asked her to because I felt I needed it, and watching at blood test she agreed.

I have some hormonal issues, a bit of glucose excess, and some of CBC values are a little of chart. But it was kinda complicated month, so I was almost expecting the results...

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