Change of anti rejection meds

[nickiwj]

Hi everyone 🙋🏻

So I had clinic appt last Friday which went very well. I am changing over my anti rejection drugs at next appt at beginning June and was just wondering if anyone is taking Envarsus (slow releasing tacrolimus) ?

My transplant was 19 weeks ago and I was on adoport tacrolimus but get severe reaction to it with the tremors while in hospital. I was weaned off, flushed and switched to ciclosporin.

It was always decided I would switch back to tacrolimus once lots of the other drugs were out of my body i.e. All the steroids, pain killers etc.

Been assured that Envarsus is a better long term anti rejection drug for the future so I'll be on this plus MMF as my combo.

Anyone take Envarsus and what are people's opinions?

Suffering bad with the hair loss still and worrying that being on this will make it worse but prefer to be on a better drug combo.

Consultant said hair loss will calm down and is due to trauma of the operation and especially where I was so poorly before transplant and poorly straight after transplant in hospital.

Love to everyone x

[Bermuda1]

I haven't had a transplant, but I am very interested in this post . This is meant to be the drug to replace Tacrolimus. In tests they found people gained less weight and also it did not have such severe effects on their kidneys. Please keep us informed of how it goes .

[nickiwj in reply to Bermuda1]

I have spoken to 3 different docs within my team at hospital now when i have been to clinic appts and they all say the same thing that this is the better drug for me to switch to. Promised it won't affect me with the side effects I got with adoport. Nervous about switching as my liver and kidney results are all spot on but everyone's goal who have had a transplant is for the best long term drug support to stop it rejecting eh.

My appts have just moved to 3 weekly so I would rather do it now where I can be monitored with bloods during the switch.

I'll defo keep you posted x

[Bermuda1 in reply to nickiwj]

Thank you much appreciated .

[h0b0]

Hi. My partner Terry had xplant last July & takes Adoport & Mycophenolate. His last blood tests showed a low white blood count so the Mycophenolate has been stopped completely & now back on steroids. His bloods are due to be taken later this week so have to wait & see what the next step is. He is however looking & feeling very well.xx

[nickiwj in reply to h0b0]

Does he just have adoport as the only anti rejection with nothing to back it up other than steroids?

Think I'm staying on MMF for now but that will change too as hospital think that is what is giving me a rash - a reaction to MMF.

Hospital want to change one at a time starting with the switch from cyclosporin to envarsus.

Hope terry is well x

[h0b0 in reply to nickiwj]

I'ts only been just over a week that he's taken adoport & steroids. For the last 9 months or so it was adoport & MMF. The steroids have been re introduced to replace MMF for the time being. Having bloods done today so will know more when results are in. He is however as I said feeling good.xx

[rickj]

Hi

I had a kidney transplant three years ago ( feb2015 ) originally on prograf, then advagraf, and for the last three months on envarsus. I had shaking and memory problems and a bit of confusion with )dvagraph, and for the three months I've been on envarsus the shaking hasn't really improved. Well, perhaps its less toxic for kidneys!

I take steriods and mycophenolate sodium (MMF)

Weight ok, hair ok,

Still, lucky boy! Lucky to be here. I hope you are going ok. For me, the bio results are fab.

Love

[Hidden]

Is Envarsus not the same as Advagraf? If it's supposed to be better, I might ask to switch to that.

[nickiwj]

Hi KLDN,

I have now been on Envarsus since last July. It was a gradual switch with lots and lots of blood test in between as I was having to double dose on new Envarsus and my old ciclosporin.

I had what the consultant told me one of the worst reactions to tach he had seen. It was adoport I was taking and was literally shaking from head to toe and bouncing up and down the hospital bed!!!!

They had to almost pin me down to help get me back to my pillow position and it was awful.

As Envarsus is a SLOW RELEASE tach, it works well for me and the beauty is that it’s Olympic taken once a day. I take it along with MMF and just MMF at night.

Worth asking at clinic if it something that will suit you and your medical needs.

Keep me posted x

[nickiwj]

Bloody predictive text. That should be only bit Olympic!!!!