Any experience with Rapamycin as an alternative to Prednisone for Polymyalgia Rheumatica (PMR)?

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

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

2 Likes

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:

2 Likes

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.

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.

@ 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!

1 Like

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

Hi, R – my last name also “Berger,” but no connection that I’m aware of.

Sadly doctors – esp. allopathic ones – don’t know much about health, lifespan, nor healthspan.

As one of the Rapa researchers said, the risk of Not taking Rapa, is greater than the risks of taking it.

But we are all guinea pigs in this field.

Regards,

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.