Sirolimus/Rapamune

Question

Hi, Has anyone been using Sirolimus/Rapamune as their immuno-suppressant med prior to Hep-C treatment? (Combined Interferon/Ribavirin)  I start next week and my doctor said I would be the first they've treated who is currently on this med.

mikesimon · Accepted Answer

I was initially taking Tacrolimus and then I was switched to Sirolimus. I cannot remember why my immunosuppressive was changed but Sirolimus was pretty new then and maybe my surgeon wanted to try it and see how I did. I wasn't very fond of it as I recall. It came in small packets and was an oily solution. It's been a while but I do remember that. I probably mentioned this to my surgeon and that could be the reason that he switched me back. At this time all I wanted to see was a decrease in  my liver enzymes. I think basically that was the goal of treatment - halt or slow down the damage to my liver.

SOC is Standard Of Care which is Pegylated Interferon + Ribavirin.

I treated within 2 months after my transplant. The virus was back right away with a vengeance and my enzymes were soaring so I was started on regular interferon which I injected 3 million IU 3 X per week. I also took ribavirin and I believe the dose was 400 or 600 hundred mg per day. My second treatment I was taking Peg-Intron at the right dose 1 X per week and 600 or 800 mg of ribavirin per day. I cleared during this treatment but not until maybe week 30 and stopped at week 53. I relapsed within 2.5 weeks. Then 6 weeks later I started Pegasys 180 mcg per week and 1000 mg of ribavirin per day. I cleared by week 12 and extended treatment for 73 weeks total. I achieved SVR that treatment. I weighed about 150 I believe.

Mike

drlovj · Answer

I had a transplant five months ago and feel great.  At first, I took Prograf, but my docs switched me to Sirolimus when I complained about my shaky hands - most notable, of course, in my handwriting.  The shaking completely disappeared after the switch.  I do not have Hep-C.

Isa53joy · Answer

Thank you Orphanedhawk and Mike for all your information.  Loved the link to abbreviations although I have a feeling I'll know them all too well in a few weeks.  I start treatment on Tuesday night and I'm hoping as everyone for great results.  My doctor anticipates 85% chance of complete removal of the virus in 24 weeks.  I'm going into it with a positive outlook.  I'm already on Aranesp for my hemoglobin so the plan is to increase my injections from 1 every 3 wks to 1 injection a week.  All the best to everyone on this forum, so glad I found it.  Your mutual support is amazing.

orphanedhawk · Answer

Genotype 2 and 3 generally have a higher success rate with SOC.
 Mike was genotype 1, harder to treat.

I'm not Mike but I can tell you SOC stands for standard of care, which in this context means interferon/ribavirin treatment.

Here's a link to abbreviations for you to refer to;
http://www.medhelp.org/health_pages/Hepatitis/Hepatitis-C-Acronyms-Abbreviations/show/3?cid=64

Isa53joy · Answer

Hi Mike,
Glad to hear you are now free of Hep C.  You mentioned you cleared while on Tacrolimus?  Did they switch you at some point from sirolimus to tacrolimus?

You also said, "From what I have read there is no problem treating HCV with SOC while taking Sirolimus." - I don't know what SOC means??? Could you please define for me.  Thx.

Also, what were your doses of IFN and RIBO while on too low a dose and then on a proper dose the last time treated.

I appreciate your time and input. It's reassuring to know others use sirolimus as well.  Thanks Mike

Isa53joy · Answer

I'm geno type 3.  I've heard Prograf is harder on the kidneys than sirolimus which is why they switched me from cyclosporine to sirolimus.  That's probably why they haven't suggested switching me to Prograf in fact this is the first time I'm hearing about Prograf or Tacrolimus (it's other name as I found on the web).  Thanks for your response and congrats on your great report since week 4 !  Will pray that it stays that way :)

mikesimon · Answer

I treated while taking Sirolimus but my ribavirin and interferon doses were too small. I cleared the virus late and them relapsed immediately. 
I was transplanted in 2000 and I cleared the virus in 2004. I treated three times to get there but, as I said, my doses were not adequate until my last treatment. I cleared while taking Tacrolimis.

From what I have read there is no problem treating HCV with SOC while taking Sirolimus.

That is fantastic that you've had a liver since 1989 and haven't needed to treat until now!

Good luck,
Mike

orphanedhawk · Answer

What's your genotype?
I'm genotype 2, almost 3 years post transplant, on prograf, and just finished 24 weeks of interferon/riba tx, undetected since week 4.

Is there a reason they don't want to switch you to prograf?

Isa53joy · Answer

This will be my first time on treatment and it will be IFN/Riba.  Please see response to HectorSF for my additional details.  Thanks.

Isa53joy · Answer

I had a liver transplant in 1989 and have been on Sirolimus since 2000 as my immunosuppressive drug alone, 1mg/day. I'm treated by a very knowledgeable herpetologist. I obtained HepC from the transplanted liver but it was dormant until about 6 years ago. Now the HepC is causing scarring and fibrosis so treatment of interferon/ribavirin is recommended. Prior to 2000 I was on Cyclosporine as a immunosuppressive drug but was switch because of the damage Cyclosporine was doing to my kidneys. I believe the other patients they have treated all were still on the Cyclosporine, not Sirolimus. I am aware of the lowering of the white blood cell count. Anemia is also a concern and will be monitored closely because of my reduced kidney function. I will be taking a considerably lower dose of Ribavirin. I was curious if anyone else has gone into treatment with a similar situation.

HectorSF · Answer

Sirolimus/Rapamune? I assume you are taking it as an immunosuppressive agent because you have had an organ transplant?
Or are you taking it off label instead?

Please provide more background information regarding...

* Why you are taking Sirolimus/Rapamune. 
* What type of doctor will be treating your hepatitis C.
Why are you the first patient that she/he has treated who is taking Sirolimus/Rapamune.
* Are you aware that as an immunosuppressive it lowers white blood cells and makes you more prone to infections. This may be an issue that should be discussed with an experienced and knowledgeable hepatologist.


Hector

Bill1954 · Answer

Looks like a pretty serious drug. Why are they considering it; do you have a long history of non-response? Are they using it in conjunction with IFN/riba/DAA drug?

--Bill