Rapamycin: Has anyone taken it?

    • June 11, 2017 at 9:33 am

      A couple of days ago, I was led to an article on Twitter about a study being done with the drug Rapamycin and how it was repairing demyelination of nerves. This is an anti-rejection drug that is touted as also being anti-aging.

      It seemed to me that using it for those with CIDP who have not had good results with other treatments might be a good idea.

    • June 11, 2017 at 3:51 pm

      There have been over 2000 US Clinical Trials involving Rapamycin/Sirolimus since approx 1997. I just searched the FDA database and none of the studies have used the drug, or in combination with other drugs, for possible treatment of GBS/CIDP or its variants.

      The FDA approved the drug in 1999. However, in 2009 the FDA put out a warning on the drug due to a high incidence of severe side affects that included an increased risk of mortality. The drug now carries a warning and many insurance carriers have removed it from coverage under their formulatories.

      Two trials studied it to see if it could treat MS: one (conducted at Harvard) was terminated in 2005; the other (conducted by Wyeth) was also ended in 2005 and has no study results posted. I can find no evidence that the drug could be used as a treatment for CIDP or its variants. Although there are international studies that may suggest it could be used for CIDP related conditions (a study in Iran), I personally discount such studies if they are not overseen by a reputable authority.

      Rapamycin/Sirolimus is a macrolide compound that is used to coat coronary stents, prevent organ transplant rejection (liver, kidney, etc), and to treat a rare lung disease called lymphangioleiomyomatosis. It was originally developed as an anti-fungal/anti-biotic agent and is still used for such. It inhibits activation of T cells and B cells by reducing the production of interleukin-2 (IL-2), as a result, it has immunosuppressant properties.

      There are ongoing clinical trials trying to determine if it can treat various forms of cancer and other conditions. A report of increased longevity in dogs has been suggested in one study. Another study suggests a specialized delivery system for the drug might help treat MS in mice. Whether favorable study results in animals can be reproduced in humans is yet to be known. Nonetheless, the numerous side affects of this drug class may make it too risky for humans in comparison to other break through treatments such as Ocrelizumab.

      If there is a viable study on the drug please post a link to it.

    • June 11, 2017 at 4:49 pm


      I read an article from a link on Twitter two days ago about Rapamycin and its ability to repair Demyelinated nerves. Now I cannot find the Tweet or my replies to it. I wonder if so,Elmer had it pulled for being medically irresponsible?

      It cited a study from the University of Baltimore and was vert scientific. It did mention the side-effects, but most of them did not seem any worse than with the other immune suppressant drugs being used. For me, the blood sugar issues would not make it a good choice for me.

      I am seeing my neuro on Thursday and I need something try. No real improvement with IVig. I had a temporary improvement after five days of Prednisone, but it raised my blood sugar, requiring insulin. It wore off in two weeks. Same with six days of Solumedrol.

      I still have two months until I get seen by the UCI Neuromuscular Center and I hate not getting any treatment until then. My neuro does not seem to know what to do and I just want to be able to walk well enough to leave the nursing home.

      I am sure you understand the frustration.

    • June 11, 2017 at 5:11 pm

      LMayberry, perhaps you came across this post:

      If this article was the source of the tweet, please read the disclaimer at the bottom of the page and know they are using their articles to make money by selling supplements through their “affiliates”.

    • June 11, 2017 at 5:28 pm

      I find it interesting that Rapamycin is being sold without prescription for an outrageous price to help your dog live longer, but labeled not for human use. You would have to be a complete idiot to take something like that without a doctor’s supervision.

      Thanks for your help. I just need to find something that works.