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mTor Inhibitor Rapamune Helps 5 ME/CFS Patients in Dallas

frozenborderline

Senior Member
Messages
4,405
Greetings. I was the first member to post about the effectiveness of Rapamune (Sirolimus), prescribed by a Dallas oncologist. Update: I had amazing improvement (not total disappearance though) of all symptoms within a month of taking Sirolimus. No negative side effects, but after abou 6-7 months I plateaued and declined again to baseline moderate- severe. Under the Dr’s care I increased dose twice over a 3 month period to absolutely no effect. So I stopped as I had eye surgery coming up and was concerned about infection. I am now in Michigan near Ann Arbor (know any doctors?) and will try this medication again at some point - but waiting for pandemic to calm down. This RX was undeniably the most effective remedy for me. I believe I am in the Immune over activation Subgroup, probably with some autoimmunity involved as I test positive consistently for SCL 40. But rheumatologist say symptoms not severe enough and could be cross reactivity with other auto antibodies. Ugh! Under the right care I am hoping to try other modulators and/or suppressors at some point. But not during this pandemic. In the meantime I never get ‘normal’ sick for the last 6 years, and I have all the classic symptoms of severe fatigue, PEM, some cognitive difficulties when crashed, and muscle pain. The horrible seizure like head crashes are significantly diminished now - a good sign perhaps of a slow recovery? Pacing helps prevent crashes. Just wanted to update this long thread about my use of Sirolimus.
I've heard Ann arbor is a particularly bad city for me/cfs bc of the air. But also that Dallas is as well. Have heard this caution from many many people so wanted to pass it along
 

LisaGoddard

Senior Member
Messages
284
My own experience with Rapamune/Sirolimus. I started a few weeks back and would just like to share progress.

Background: I've been housebound with ME/CFS for the past 13 years (diagnosed 2002). My main symptoms: fatigue, brain fog and sore lymph nodes (groin, under arms, and occassionally spleen).
I am aiming to maintain the dose used for antiaging (5-6 mg taken weekly).

Week 1 on Rapamune: Possible lessening of lymph node pain? No significant change in ME.

Week 2 : More definite lessening of lymph node pain. Pain returned as I came toward the day for my next dose. Possibly a little better generally.

Week 3. Very little lymph node pain. My capacity beginning to improve.

Week 4 and 5. No lymph node pain. And capacity increased. Still housebound but able to function longer. Also, it is usual for me to do 'mental/physical activity' before my usual morning routine because by the time I have had breakfast, dressed etc., I am exhausted again. Now I can do my morning routine and then sit down to some task. Haven't been able to do that for over a decade!!

Week 6. Busy week at home and lymph node pain and fatigue returned. No words for disappointment! You'll know. I will increase the dose by 1mg and see what happens. Can't go any higher than that, though I would love to.

Side effects: second day after I've taken the weekly dose, I get agitated. It passes but is a noticeable pattern.
Possible concerns: Before starting treatment my lymphocyte count was below the normal range, so will need to keep an eye on that.
 

LisaGoddard

Senior Member
Messages
284
Latest update on sirolimus/rapamycin/rapamune:

I increased the dose but the lymph node pain and fatigue flared up badly afterwards.
So, I am back to cold baths and using ice packs to calm down my immune system.
Very sadly, I think my experiment with rapamycin is at an end.

Possible reasons it worked initially and then stopped: a) it does exacerbate some autoimmune conditions and has some proinflammatory effects so perhaps it was triggering something in this way b) even anti-inflammatory effects make me feel ill* so perhaps this was the cause c) who knows???

*Any med or supplement that is proinflammatory makes me feel terrible straightaway, but anti-inflammatories also make me ill, it just takes longer to manifest and the effect is less pronounced than with proinflammatories. I had hoped as sirolimus/rapamycin is immune suppressant that I could bypass all of this, but from my browsing of the literature it seems sirolimus' effect on the body is more complicated than I hoped
 

Dude

Senior Member
Messages
171
I just got my Rapamycin (Sirolimus) from allgenericmedicine.com.
Since some People benefit from it (or completly recover) i wanted to try it myself. Iam using 2mg every 5days with Grapejuice. Ive stopped all other Nems and Meds for now. Iam a no responder to LDN. Day 3 so far, nothing spectacular happend, but i got diarreha which is a common side effect of the drug. I will report back if something is changing. Iam planing on taking it 6 Weeks.
 

Dude

Senior Member
Messages
171
Another success story from reddit.

As for myself, iam still taking it. No change so far. I had the GPCR test panel done from Celltrend. I have no autoantibodies. Iam starting to wondering if only this subgroup is a responder?
 
Messages
39
I don't know much about rapamycin. Have ordered some to trial it myself. Will research some more before I take it.

However, I did see a doctor on Reddit reporting that he takes 5mg once a week, Might be worth upping your dose.
 

Dude

Senior Member
Messages
171
I just wanted to give an update for the sake of completeness. Unfortunately, rapamycin had not shown any effect after 5 weeks of trying. My guess is that it helps the most in people who have autoantibodies to G-protein coupled receptors.
 

pattismith

Senior Member
Messages
3,926

pattismith

Senior Member
Messages
3,926
Here a first report of my Rapamune trial:

I have clinical delayed muscle relaxation (like in myotonic dystrophy), muscle pain and weakness.
I also have skin microvascular damages, that got worse after my 4 RNA COVID vaccines.

I am currently doing a rapamycin trial, and yes it does help my muscle.
I take it once a week.
I got toxicity at 4 mg (drop of my blood red and white cells, rise of my liver parameter), but I am ok at 2 mg.
It helps with my muscles, but also with my skin vessels: I have some signs of skin perfusion improvment;
 

ChookityPop

Senior Member
Messages
583
Here a first report of my Rapamune trial:

I have clinical delayed muscle relaxation (like in myotonic dystrophy), muscle pain and weakness.
I also have skin microvascular damages, that got worse after my 4 RNA COVID vaccines.

I am currently doing a rapamycin trial, and yes it does help my muscle.
I take it once a week.
I got toxicity at 4 mg (drop of my blood red and white cells, rise of my liver parameter), but I am ok at 2 mg.
It helps with my muscles, but also with my skin vessels: I have some signs of skin perfusion improvment;
Could you describe how much it helps your muscles? With examples etc? I have huge muscle issues and thinking aobut trying this atm
 

pattismith

Senior Member
Messages
3,926
Could you describe how much it helps your muscles? With examples etc? I have huge muscle issues and thinking aobut trying this atm
It helped with muscle strenght and muscle energy.
My ME/FCS/Fibro may be comorbid with psoriatic arthritis, so I am currently doing a trial with methotrexate which is the fIrst drug of choice.
However I doesn't feel great on it, as often do people with depressive symptoms...
 
Last edited:

Hoosierfans

Senior Member
Messages
395
It helped with muscle strenght and muscle energy.
My ME/FCS/Fibro may be comorbid with psoriatic arthritis, so I am currently doing a trial with methotrexate which is the forst drug of choice.
However I doesn't feel great on it, as often do people with depressive symptoms...
I’m happy to hear of your improvements on Rapamycin. I’m starting my own trial (thanks for commenting on that thread and for the warnings to watch my blood work!)

Curious that you mentioned depressive symptoms — has the Rapa affected your mood at all?

That’s one area where my docs and I were struggling w the available research. Some studies indicated that under active mTOR is pathological in depression (thus Rapa would make it worse theoretically), while other research indicated that chronically overactive mTOR could lead to depression (and other mood / neurological disorders like autism and scitzophrenia).

I’m literally 1 dose in of 1 mg, and my depression disappeared for 3 days after my dose. And my severe anxiety as well. 🤷🏻‍♀️. We shall see what the next few weeks brings!!