Anyone on Sirolimus?

[cmoosey]

My husband is about to start this. I'm reading about it and it's scaring the crap out of me! He has already had a transplant and lymphoma. We trust his dr but this drug looks awful. Just looking for any experience with it...

 

[Clash]

I don't know of anyone who has used sirolimus as treatment, I did a quick pubmed search and came up with this:

Dr M Parkes, IBD Genetics Research Group, Department of Gastroenterology, Box 201A, Addenbrooke’s Hospital, Cambridge, CB2 0QQ, UK; [email protected]
Revised 16 May 2008
Accepted 18 May 2008


Abstract

We present the case of a 37-year-old woman with severe refractory colonic and perianal Crohn’s disease who had lost response to second-line, steroid-sparing treatments azathioprine, methotrexate and infliximab. For many such patients extensive surgery has often been considered the only option. New insights provided by the results of genome-wide association scanning in Crohn’s disease highlight autophagy, a cellular process implicated in the clearance of intracellular bacteria, as a key process in Crohn’s disease pathogeneses. Sirolimus (rapamycin) is a drug used to upregulate autophagy in cell culture in the laboratory, and in clinical practice to prevent rejection following organ transplantation due to independent immunosuppressive action. Our patient was treated with sirolimus for 6 months at a dose that maintained serum trough levels of 5 ng/ml. There was marked and sustained improvement in Crohn’s disease symptoms with the Harvey–Bradshaw index falling from 13 to 3, in serum markers of inflammation (C-reactive protein fell from 79 to 2) and endoscopic appearance. This is the first reported case of the use of sirolimus to treat Crohn’s disease.

source

It seems as if this may have been the first case of a person treated with sirolimus for Crohn's Disease but this was back in 2008. Maybe it has become more widely known and someone on here has experience with it, if so hopefully they will be along soon.

Hugs!

 

[meteoman]

Any update? I hear the drug is, actually, well-tolerated by most people; however, with your husband's history of lymphoma and transplant, I would think it would be some cause for concern. I don't know, but I'm sure his doctor does.