My First 3 Months on Rapamycin (Sirolimus) for ME/CFS

 

A few months ago, I started a trial of sirolimus (known as rapamycin in research and Rapamune commercially), which has been shown to be quite effective for many people with ME/CFS and long-COVID in research studies. In this past post, I listed the articles and videos I watched about this old medication being repurposed for ME/CFS and long-COVID and the studies that have been done so far. I also shared the results of my own informal survey of patients, showing over 50% who'd tried sirolimus found it helpful.

Sirolimus is an old medication, approved for use as an immune suppressant in organ transplant patients. Researchers (and many patients) have been repurposing it for ME/CFS and long-COVID, using it at tiny doses (compared to what's taken after organ transplant) weekly or twice-weekly. It's not only being used as an immune suppressant (especially at such tiny doses); it directly affects some biomarkers researchers have found in people with ME/CFS and long-COVID (see the research resources at the bottom of the linked post). My primary care physician prescribed it for me, it had to be ordered from a specialty pharmacy (all the major pharmacies, like Walgreen's and CVS Caremark, have them), and my insurance covered it 100%. 

For the first two months I took sirolimus, I recorded a vlog of my reaction to it. I carefully followed the protocol used in the studies, gradually increasing the dose from 1 mg once-weekly to 6 mg once-weekly (then going back down to 3 mg one-weekly, then trying 3 mg twice-weekly). The results after two months were still not fully clear. My ME/CFS has been quite a bit worse this year than usual, and during those first two months, I continued to have ups and downs and crash days almost every week, though I had a week or two that were better. In the vlog, I recorded my doses, how I felt, and how I thought I was responding to the medication (I didn't have any obvious side effects).

You can watch my vlog of the first two months on sirolimus on YouTube or I will include it below: 

After I finished recording the vlog, I continued to take it for another few weeks. Around mid-August, I noticed I had fallen into a repeating pattern the past few weeks of crashing every week between Wednesday and Friday. At that point, two weeks ago, I decided to stop taking sirolimus to see what happened.

Last week, my first week off it, I felt pretty good, with only one mild crash day (early in the week, likely from over-exerting on Sunday). This second week off it, though, has been much worse, badly crashed Tuesday (though, again, I did too much on Sunday!) and moderately crashed on Wednesday and Thursday (though we lost power for 24 hours, so I slept very poorly Tuesday night without a/c). So, this week was not a great test case!

One of my main issues, especially in recent years, has been recurring crashes characterized by immune symptoms, like sore throats and flu-like aches. I do think the flu-like aches have been less frequent the past few months, though mild sore throats have been pretty common lately. 

So, my conclusion so far is ... I have no idea if it was helping or hurting! 

Since then, I've gotten advice from two people:

My ME/CFS specialist said her patients have seen the best results with sirolimus when increasing the dose very gradually: 8 weeks at 1 mg, 8 weeks at 2 mg, etc. (I followed the research protocol and went up 1 mg each week).

A visitor to my blog shared his own experiences:

"I struggled with the side effects of Rapamycin for a long time. I trialed it 4x at varying doses and frequencies. I found it always resulted in a lot more PEM [post-exertional malaise].

Since, I discovered a few things:

1. Rapamycin has an inhibition / suppression period for 48-72 hours after dosing. During this time, I found my baseline dropped dramatically and I needed to rest a lot - otherwise I’d trigger much worse PEM than usual

2. Staying at too low of a dose for too long made me feel worse. Per my doctor, it’s necessary to be between 4-6 mg to get the immune modulating and anti inflammatory benefits, not just the autophagy [refer to the research I linked to above]. 

3. I can now tolerate it much better when I take Life Extension Bio-Luteolin daily with Rapamycin weekly. Recommended by my ME/CFS doctor after they saw it helped other patients tolerate Rapamycin

4. It’s the only medication that has improved my very very low T cells."

 

[NOTE: His experience of worsening for a few days after the dose was not mine. In contrast, I took my dose on Sunday morning and generally felt well through Tuesday, then crashed Wed - Fri, then felt better again on the weekend. That pattern made no sense to me! If what he says about the suppression period is correct, it may be that since my immune system is often over-active (hence the frequent immune symptoms), that suppression helped me for the first few days.]

 

I found all that very interesting, and I am certainly not done with sirolimus. I would like to try some of these recommendations. Besides, it's a free medication that seems very promising in research studies. However, my son is getting married at the end of the month, so I can't afford to do any more experimenting until after that! I have continued to take microdoses of tirzepatide, a GLP-1 medication (injections of 0.05 ml (.25 mg) 3 times a week), which does seem to help stave off the big, months-long immune crashes.

 

I'll keep you posted! 

 

Do you have immune (flu-like) symptoms?

Have you tried sirolimus - or anything else that has helped? 

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