solarimus

[ccartbmw]

Hi,
Has anyone used the new drug solarimus for AA. My doctor wants me to go in the clinial trail. But, reading up on this drug, I am unsure because of the side effects. Help!!

[Neil Cuadra]

Are you referring to Soliris, the drug used to treat PNH?

Do you have more information about the specific trial your doctor told you about?

[ccartbmw]

Hi,
This is the correct spelling. The trial is suppose to open broader, but when I read up on the trial it does not seem to be working on the current patients.

[Neil Cuadra]

Sirolimus is also known as rapamycin. Manufacturer Wyeth uses the trade name Rapamune. It is used to prevent rejection in kidney transplants.

Sirolimus is an immunosuppressant that can block T cell activation, as cyclosporine also does. There was a trial in 2003 called Improving Immunosuppressive Treatment for Patients With Severe Aplastic Anemia that studied the addition of sirolimus to the ATG and cyclosporine given to AA patients. That part of the study was stopped in 2005 due to lack of efficacy.

A trial called Sirolimus and Cyclosporine for Treatment-Resistant Aplastic Anemia is currently recruiting participants. It is studying the safety and efficacy of combining sirolimus with cyclosporine. Perhaps this is the trial your doctor told you about, ccartbmw.

There are also trials testing sirolimus for prevention of Graft Versus Host Disease (GVHD) after stem cell transplants, so it may be useful to bone marrow failure patients in a number of ways.

[Marlene]

I can't remember all the treatments you've been through already. I would say if you went into remission with ATG the first time, then wouldn't it be best to try it again. Seems to be a safer approach.

[Ruth Cuadra]

Correct me if I'm wrong, Marlene, but I think you meant to say that if ccartbmw went into remission after ATG that it WOULD be best to try it again. Many people who respond to ATG have had multiple treatments (like our own Andrea Pecor).

Regards,
Ruth

[Marlene]

yes.......M

[michelle_lapuz]

I'm currently taking Tacrolimus (similar to Solarimus and used as an alternative to cyclosporin with less side effects)....unfortunately, it hasn't been working for me. I'll probably go in for a second round of ATG and request the use of Cyclosporin rather than Tacrolimus or Solarimus (anyone else out there use this with success?)....good luck with your treatment

Michelle

[ccartbmw]

Hi,
Thanks, for the help, yes I did go into remission after having the ATG treatment, but not after spending 5 long miserable months in the hospital. My current doctor does not know if the cause was from doing the treatment incorrectly( Kaiser Hospital) or from serum sickness. That is why I have the fear of having this treatment again. Has anyone experienced this type of reaction due to serum sickness? What were your symptoms?

Thanks for your help
Carol