Sirolimus

[Curvychic_76]

Hi, I’m almost 6 months post transplant and my creatinine is around 2.2 and my doctors want me to go on sirolimus and stop my cellcept. I wanted to know is anyone taking sirolimus and have you had side effects?

[Dna4christ]

Hello there!

When my creatinine started creeping up from .9 to 1.9, my transplant team prescribed me sirolimus. I didnt do very well as I had several side effects from it. However, everyone reacts very differently to medication. This was my experience as an adult (2nd transplant; I didnt have any side effects when younger). First, I developed painful lip sores//tiny blisters which covered my whole lips (top and bottom). After my lips were healed, I started having diarrhea every 20 mins which put me in the ER. Because of that, they stopped the med and increased back the dose of tacrolimus as before. It was very unpleasant and have been off since then. If they do give you sirolomus, i hope it all goes well as it had with my first transplant!

[sallyjr1]

Hi, yes, I have been on it since 2004 in combination with cellcept. I reacted to Prograf and had 3 months of horrible GI distress, losing 40 lbs in 2 months. Once they switched me to sirilimous with cellcept everything has been fine, creatinine stays lower than it ever did on the prograf.

[Balap]

cellcept and tacro are the best medicines for transplant. May I know the reason for stopping cellcept? cellcept gave me frequent UTI so I was switched to Azoran. when tacro gives toxicity, it is usually switched to sirolimus

[alimesoda]

My husband was on prograf and sirolimos after his 1st transplant for 16 years. Drs can’t recall exactly why they switched him from cellcept to sirolimos. Could’ve been GI or skin cancer related. He had no negative side effects and kidney had a long run:). Now he has had 2nd transplant from me, and he’s doing great on prograf and cellcept combo.

The doctors have been using these meds for decades. They know what you need so put your faith in them. Wishing you continued improvement and health!!

[marcyc NKF Peer Mentor NKF Ambassador]

My husband was on Everolimus (Zortress) and had skin issues and hair loss. When he fractured hi foot it wouldn’t heal so the changed him to Tacrolimus and it healed. His creat baseline is 1.8-2.0. However everyone is different when it comes to these meds. Ask your doc a lot of questions but trust that they are working in your best interest. Good luck.

[Ekim2010]

Hi!

I've been on sirolimus and tacrolimus with prednisone for about 9 years now. The sirolimus was started to lessen risk for skin cancer. I have had no problems with this combination and creatinine level is staying right at 0.9-1. The higher risk for skin cancer is present with any immunosuppressant drug, also slower healing with sirolimus. Your health care team will probably want to switch to another drug if you have injury or surgery.

[Transplant37]

I switched to sirolimus from a regime of cyclosporine / cellcept / prednisone. With sirolimus my creatinine dropped to 1.1, but the side effects were digestive issues. We eventually dropped the cellcept and that helped. Then I gave up gluten and it got much better. I would rather have those side effects dietary restrictions than a higher GFR.