Sirolimus

[jojokarak]

Has anyone been on sirolimus or is on it? Leeds are talking about putting me on this as my kidneys are not getting any better on advagraf, but I have heard a few bad things about this medication

[Hidden]

Sorry, I haven't heard of it. If you go on it please let me know how you get on. You've been through enough. Love and hugs Lynne xxxx

[Will3]

Hi Jojo, my team have said they are going to put me on it as soon as I reach a year post in 2 months time because of kidneys. My tac has halved in the last 8 weeks. I’ll be keeping an eye on this post.

Will

[jojokarak in reply to Will3]

I am under a kidney specialist as well and I asked him his opinion and he said he wouldn't recommend but that's just one person's opinion, I have read up on it and the side effects blew my mind lol I am going to discuss options on Friday at Leeds I hate changing meds

[Kate50]

Hey Jojo, how are you, I take it your kidneys are still playing up, I’m in a similar position, and have been told they may change me from prograf to something else but unfortunately I can’t remember the name but the consultant did say the side effects were acne, swollen gums and also facial hair growth 😱😱, they tried reducing prograf and this did improve kidney function but my liver function was off so they have increased the prograf again supposed to be having my bloods done this week, take care and keep us updated on how you get on 🌸💕

[jojokarak in reply to Kate50]

Thanks Kate exactly the same has happened with me reduced my tac and alt and bilirubin is rising but hardly any improvement with kidneys to be honest I bloody sick of it lol

Find out more on Friday

You take care my dear and have a lovely Christmas 😘

[Kate50 in reply to jojokarak]

Well good luck for Friday, I’ll be thinking of you, and I hope you have a fantastic time at Christmas 🎄🎅😘

[dizzime]

Hi Jo, I've been on Sirolimus for over 4 years, they put me on it about 6 months after my transplant because of my CKD. I am on 3mg once a day and have had no side affects. The only thing with it is, if you have to have another operation you have to come off it as it can delay healing. I have had to do this twice, hernia operation and appendectomy, I was given extra steroids to stop rejection and then back on them. No harm done and ALTs are fine. I am now in 3mg Sirolimus and 250mg MMF and doing great. Good luck and I hope it works for you. X 😊

[jojokarak in reply to dizzime]

Thanks my dear 😘 I will see what they say today I am hoping for some improvement but what will be will be be x

[dizzime in reply to jojokarak]

Good luck. XX😀

[Hidden]

Hello, yes I have heard of it, I am on the Sister drug Certican Everolimus 1.25mg twice a day, I had my Liver transplant in March 2014 in Nice Hospital France ARCHET2 the French do not use sirolimus, they have in the past but have moved to Everolimus as they found it very much better and much kinder to your Renal function, my Kidneys have improved dramatically over the last four and a half years, to the point my last check was virtually normal, the after effects of the drug I seem to miss, although I am still very tired and extremely weak, this is due to other little problems. I will state that as you know different meds work differently with different people, but there is nothing stopping you asking you for Everolimus. As the French are years ahead of the UK re liver problems they should know.

[Hidden in reply to Hidden]

Hi Jumbot,

You mentioned that you think the French are ahead of the UK regarding liver disease.

I'm curious why. We live in the US.

Best wishes to you.

Mary

[Hidden in reply to Hidden]

French Drink most of their wine they produce, alcohol related Liver disease is rife in France,

[jojokarak in reply to Hidden]

I will be asking about this thanks x

[Identity75]

Hi Jojo. Yes I’ve been on it for a while now as it plays more nicely for my chemo. Had no noticeable side effects but I was only on 1mg a day. Have had to go back on Tac though for a bit due to my upcoming hernia op, as mentioned sirolimus isn’t great for when your body needs to heal.

[jojokarak in reply to Identity75]

Thanks for that, I seen your in clinic today your first Friday appointment I will hopefully catch up with you x

[Identity75 in reply to jojokarak]

I’m done and dusted already, am sure our paths will cross one of these days, would have been lovely to meet you. Hope all goes well.

[Kate50]

Morning Jojo, hope you get some good news today 🍀💕🍀

[jojokarak in reply to Kate50]

Hiya Kate 😊 alt and bilirubin rising a little more but they said they are not worried at moment .. no changes to meds just yet apart from one day 4mg and next 5mg as if I don't get confused enough 😂

See kidney consultant again next week so I will see what they suggest

Hope you're well X