Kidney Patient Guide

Looking to get some real world experience from anyone taking these meds.

It is 15 years since my transplant and over the last few years my function has been declining - Creatinine now around 250.

I had a biopsy a few weeks ago to determine what is going on and the consultants think that the decline is due to age of transplant and toxicity due to long terms Tacrolimus.

They have recommended that I move onto either Azathioprine or Mycophenolic acid in addition to reducing Tacro and having no experience of either I wanted to find out others experience in terms of side effects.

Been on aza for 40 years now.

The major side effect is minor skin cancers.

I've had 3 BCC's and about 4 SCC's. All needed removal.

There is a risk that you could develop a malignant skin cancer but your unit should give you advice as to what to look out for and referral to a specialist dermatologist should be immediate.

Don't know mycophenolic acid at all.

Hope it goes well for you.

C

I take Tacrolimus AND Mycophenolate Mofetil as my primary drug regime. I switched to MMF from cyclosporin because the latter was giving me very bad stomach issues and weird extra hair growth. I've not had any significant new side effects from MMF and I've been taking it for about 12 years now. Best of luck with making changes to protect your remaining function!

Thank you so much Chris and Thumps for your encouraging replies.

I'm really quite reluctant to change what I have been on for 15 years but I am going to have to do something faced with a declining function.

I was warned about the side effects on the skin with Az and given I still do a fair bit of cycling I opted for MA.

So I'll start it and see what happens!

Incidentally as a PS when I had my biopsy I had to lay flat for 6 hours and was looked after very well by a nurse.

I found out just before I went home that she had not been vaccinated at all. Vaccination is not mandatory for NHS staff but it's obviously unacceptable for that to have happened.

I only found out by asking the nurse -so my advice don't assume everyone treating you is vaccinated.

Gosh, that must have been a scary realisation! Hope all remains well.