Prednisolone

[Tracy1654]

Has anyone managed to come off Prednisolone 8 yrs after transplant and just manage on Tacrolimus alone?

[Alfredmynewkidney]

My team told me I'd be on it as long as I had my transplant due to my high antibody count. I was hoping not to have to stay on steriods forever

[Santaponsa1 in reply to Alfredmynewkidney]

Me too can’t come off it. Only on 5mg daily though which is enough. I’m on two just now as I’m off my immune suppressants temporary due to my gfr dropping quite considerably which is worrying, however think that’s to do with me having covid which isn’t nice, but getting there. I got the new drip treatment for people like us who’s immune suppressed and I was fine following same. It’s a temp prevention but worth having. Stay safe you all..x

[Weimarador]

Hi, I have never been on it. Apparently the major transplant centres have different thoughts on what you take. I had my transplant at Manchester and they don't use steroids (only first 30 days) . If I had gone to Birmingham they would have put me on prednisolone long term. I take tacro (envarsus) and mmf.

[Tracy1654 in reply to Weimarador]

Hi thanks for that reply, interesting to know different areas in uk have different thoughts,I thought everyone with a kidney transplant was banged on steroids.

I had mine at Freeman in Newcastle, was there yesterday for check up and have managed to get down to 2 mg per day Pred and 7mg advagraf.

Managed to come off mmf a year ago.

Nice to speak to someone else about transplant drugs.its not your everyday conversation lol

Hope you are well,

Tracy

[Weimarador in reply to Tracy1654]

Hi Tracy,

As I understand you have to be on at least two different suppressants. The big question is which two? I've had a few side effect issues - bad sleep, tinnitus type noises and stiff muscles. The tinnitus is the worst but my team say they have never come across it before despite all the info saying it is a common side effect .Annoyingly they could be from either of the two I take but when they offered me Prednisone I didn't fancy it long term after reading up about it. For some reason they also don't seem keen to switch me off tacro to one of the older drugs like sirolimus, though there must be plenty of people doing ok on it still.

What levels of tacro do Newcastle keep you on? I'm back at Stoke now and they think anything from 5-8 is ok but I think being closer to 5 is better for me.

Keep well

David

[Tracy1654 in reply to Weimarador]

Hi David, nice to hear from you.I started off after transplant in 2014 on MMF, Tacro and Pred.

However last March I got shingles that just would not go away so they took me off MMF.

I also took the opportunity at that appointment to tell the consultant I thought I was suffering fairly serious mental health issues due to Pred and the discussion started about trying to wean me off Pred, so far Im down to 2mg per day now and I definately feel the difference in my head.

I would say to you if you can manage without steroids carry on as you are, they are great at the job they do but WOW the side effects are really crap lol.

I have tinnitus from time to time, poor sleep and stiff muscles, could it be the tac ????

I was on 3mg of tac but when they stopped my MMF and started my reduction of Pred they put my tac up to 7mg per day.

Its quite nice to chat to someone else about this stuff, I never have before so thankyou. Hope your keeping ok.

Tracy