#1

Out of the blue, with no previous autoimmune issues in the past, have gotten what seems to be Polymyalgia Rheumatica (PMR) an autoimmune disease that effects one’s muscles. Like so many of these autoimmune diseases, the medical establishment doesn’t really know the root causes or why someone would get it.

I was diagnosed from the symptoms (severe pain in the arms & shoulders, fatigue, brain fog) high C - Reactive Protein and Sedimentation Rate (Esr) blood tests. And the main determinant combined with the blood tests is that the pain goes away (mostly) once given 30mg of Prednisone.

Normal procedure is to keep you on Prednisone for at least a year where you relatively quickly taper from the double digit milligrams of Prednisone to 10 mg and then taper down very slowly to 0 for most of the year. And if symptoms come back, they bump up the Prednisone again. Many people do get rid of the symptoms after a year but many don’t and can be on Prednisone for many years.

So its not really a cure, and Prednisone has its own dangers of bone loss and other negatives. And at least for me, I still have low level pain and worse, there is a constant fatigue and brain fog. Which is a bummer since I need my brain to do my daily work.

Wondering if anyone has had experience with Rapamycin and PMR or related autoimmune disease? I see there have been some promising studies with Rapamycin and Rheumatoid Arthritis, which isn’t exactly the same as PMR as its an inflammation of the bone instead of muscle, but sounds like the mechanisms are similar.

FYI: I have never taken Rapamycin, but have been following along with other people’s journeys

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Lupus and rapamycin (Good Results to Report)
#2

There has been a bit of a discussion earlier about MMP-9, autoimmune diseases and lupus - perhaps of some value?

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#3

Some other possibly relevant information:

  • Blockade of the mTOR pathway offers new treatments and prevention strategies for rheumatic diseases

Activation of mTOR (mechanistic target of rapamycin) in rheumatic diseases

Also, generally, rapamycin (sirolimus) is known to be a very good anti-inflammatory:

And interestingly they mention in this patent of Everolimus (a rapalog - very similar to rapamycin) with another drug, as a treatment for Polymyalgia Rheumatica:

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#4

Absolutely seems worth a try, with very little to lose as long as you have a medical provider who will work with you since you’d need to monitor your white blood cell count (and lipids, kidney function, etc) while taking both prednisone and rapamycin/sirolimus. At the very least, I’d hope the rapa would act as a steroid-sparing agent that would allow you to get by with a much lower dose of prednisone and in doing so experience much less side effects. At best, maybe over time you’d be able to get off the prednisone and just stay on rapa.

What I definitely wouldn’t do is get rapa on your own and take it with prednisone without monitoring or supervision.

Sorry you’re going through this! My step dad had PMR and has just recently been able to finally get off prednisone, but it took 2 years.

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#5

For sure won’t be starting on Rapamycin without working with the doctors. Got too many weird things going on already. But don’t know if I’ll be able to talk the doctors into going along with it yet. Hopeing to find some more studies that show its appropriate.

#6

@ RapAdmin

Re Dr Green Baylor U presentation. God bless Dr Green, he’s a huge mTOR/aging promoter, many of us might not be here if not for his growing base of disciples.

But when he flat out makes claims such as “breakdown of the BBB is THE cause of Alzheimers”, then he crosses the line.

We have NO idea what is “the” root cause of Alzheimer’s disease.

The papers he cites, using transgenic AD mouse models (mice don’t get AD btw) or other in vitro models, none of these studies have been translated to human RCT.

Having said that, there is of course growing evidence for the systemic cellular benefits of mTOR suppression, but the verdict is still out.

Re inflammation, I plan on adding TNF-α and IL-6 to my next blood panel.

Good luck rberger!

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#7

Recent “news” related to rapamycin helping in auto-immune disorders:

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#9

Lots of “Bergers” out there but good to virtually meet you.

The combination of the “traditions” of Medicine (I always think of the SNL Steve Martin skit " Medieval Barber Theodoric of York") and the legal constraints of being sued ensures that “modern medicine” can’t be innovative.

#10

I took 5-10 mg of prednisone a day for two months. I have a compressed nerve and it was the only thing that helped. Rapa was no help at all.

#11

Sorry that you were in pain. Prednisone is a miracle drug but also a cursed one if you have to take it for a long time. Still curious about how Rapamycin could help with auto-immune issues.

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#12

Any update on the thinking of this? I did just listen a podcast where Dr. Steven Austad has a theory that Alzhelmers is autoimmune related.

https://www.uab.edu/icar/about/icar-leadership/steven-austad

#13

Steroid sparing is important - but control of PMR is important due to risk of temporal arteritis.

In patients with autoimmune issues, I have had good results with a combination of rapamycin cyclically, colchicine, curcumin and MMP dosed doxycycline (20 mg twice daily).

There is no published data on this approach, and for PMR one would have to carefully monitor CRP or ESR to determine response to therapy.

Something to discuss with your doctor.

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#14

My mother had PMR. If I recall correctly, prednisone was the the #1 choice for treatment to contain the inflammation and not much else needed. Once your ESR came down, you can tape to a much lower dose over the next 12 months. She eventually taped it down to 2.5 mg and without another flare up for many years. The total time she was on high dose was about 3 months (40, 30, 20 mg) but was on maintenance dose for 12 month and then ultra low dose as needed. Prednisone is incredible effective for PMR.

Obviously there were side effect, puffy face being the main one. And some thinning of the skin too.

#15

Yes, the standard treatment is steroids. Those however raise risks of a number of adverse health outcomes. The tradition is high dose to get it under control then taper to minimum necessary to keep it under control.

The next time I have a patient with PMR I’d initially go with steroids, get it under control, add those items listed prior and then try to fully wean early with monitoring of CRP.

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#16

I hope I never have PMR again, but if I do, I would want to try your proposal.

The prednisone was a miraculous “cure” for the pain and other symptoms and prevented further damage from it.

But the year on Prednisone taper down, was one of the worse years of health for me in my life. Several life threatening infections mainly. Was hospitalized twice for them. As well as brain fog and generally feeling miserable until I finally was able to completely stop the Prednisone.

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#17

Thanks for bringing up PMR.
I have fatigue, poor sleep and brain fog. Two PET scans both showed mild GCA/aortitis which is linked to PMR. I have pain in buttocks, neck and shoulders, which from what I understand is typical for PMR, but the pain is not a problem compared to the fatigue, sleep issues and feeling of malaise. My mother had the same symptoms. I think it started for us both gradually from 40 years old and got bad around 50 years old.
I think what I have could be a form of PMR, but my CRP and ESR is always low and trying 5 days of 20 mg Prednisolone did not help with my symptom. It did reduce my serum ACE level which is always at or above the upper reference range which could point to sarcoidosis and sarcoidosis can cause SFN (small fiber neuropathy), and I do have SFN-symptoms when inactive like burning thighs, cold feet. I need to sleep fully dressed and always cover my shoulders and neck with extra clothes (except when very active) to avoid getting stiff. It is frustrating and lonely, no formal diagnosis and I have not been able to find anyone having the same set of symptoms.

Unfortunately taking 3 mg rapamycin with grapefruit every 11 day does not seem to help (Sirolimus-level confirmed by blood testing). I also tested taking LDN about half a year ago, 3 mg per day, and I agree with you, it really made my dreams very interesting, a good thing. But I stopped since my mouth got so dry at night and having major issues with my teeth, and it did not seem to help with fatigue/brain fog. Unfortunately my mouth is still dry at night. Since I need to cover my head when sleeping anyway, I wrap the head cover so I cannot easily open my mouth, which makes it less dry.

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