← Return to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments

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@4corazon

I am now on sirolimus, generic for Rapamycin, which is used off-label for ME/CFS, but is actually a drug for anti-rejection for those with organ transplants. I take 3 (1 mg) tabs once a week. Just started about 2.5 weeks ago. Didnt feel anything until the 2nd dose, then gradually getting a little bit of energy. Still can't exercise, even pacing causes PEM, but according to the article I read in Health Rising blog about a dr with ME/CFS who was sick with it for 10 years, he noticed a difference at 3 weeks, then at 6 weeks in total remission! I am so hopeful I can be like him. Lately I had to sometimes spend a lot of time in bed, use a walker as so weak it was difficult to get around. Now I an sit up most of the day, so even that is a blessing. I have tried Abilify, which was amazing for about 3 months, then stopped working. Tried again a couple of times but not effects like the first time. I have been on modafanil, with no help at all. Several others but nothing has helped but this drug, which I have high hopes for. It is not covered by insurance, so I used the GoodRx to get it & was $88 for 30 tabs but I only take 3 a week. There is another place to get it that is safe, so my provider will order it there next time. $58 I think. The brand name is very expensive.

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Replies to "I am now on sirolimus, generic for Rapamycin, which is used off-label for ME/CFS, but is..."

I tried sirolimus without effect, but had same response to Abilify--it worked great for 3 mos. I was able to walk an hour, which i had not done in years. Then it quit. Have re-tried several times but no help. I am on Modafinil now, which is helping, but as my article below says, raises BP so dont know if safe to stay on it. Will see my cardiologist. Maybe I should try sirolimus again. I do have some left I think. Will ask dr.