My PET scan has indicated cardiac sarcoidosis but my cardiologist has been reluctant to test Rapamycin (says it is dangerous) They put me on prednisone for a month, which was a nightmare and I refused to continue. Since then I got hold of Rapamune solution and took 5-7 mg once a week for 11 weeks. My latest echocardiogram suggests improvements. I took 4 weeks break and started again, this time I’m eager to increase the dose.
I’ve heard some people going as high as 14mg once a week. That’s at par with kidney transplant patients taking 2mg daily. I’m planing taking closer to 10mg once a week for 6 weeks, taking a break for a month and repeat until my next echocardiogram in 12 months.
Has anyone here been experimenting with Rapamycin for sarcoidosis or similar disorders?
Find another physician, the physician works for you.
You are the boss, the physician is the employee you are hiring for their opinion, you make the decisions. Not the other way around.
Thanks for the response. Finding another physician in Canada, in a timely manner, is not easy. It took 12 years for them to suspect sarcoidosis. An MRI in 2019 suggested sarcoidosis and a PET scan showed signs of sarcoid granulomas. Don’t want to risk having to start all over again. After the pandemic, it’s become extremely difficult to find a specialist here.
Without going too much into details, based on all my health issues in the past 25-30 years, I now have strong evidence all my health issues may be due to an overactive immune system. Having stumbled on Rapamycin, I want to find the best dose that will push down mTORC1 without lowering mTORC2 too much.
The doctor in question is a very high profile surgeon that does heart transplants. I’ll keep him for now while I’m running my experiment in the background. And if rapamycin pays off, maybe he’ll agree to prescribe it for me.
Thank you for posting this. Please update us when you have done more treatments with rapamycin.
I have a close relativ with sarcoidosis in the lungs (since 10 years). He gets relief and improved quality of life from thorns Quercetin Phytosome and theaflavins, the life extension brand. Maybe rapamycin can be a disease specific treatment?
Thanks for sharing info on Quercetin. It seems to inhibit mTOR. I might consider it to reduce cost of Rapamycin. I use grapefruit to reduce the cost right now.
There is a case report of a 61 year old with sarcoidosis that was cured with sirolimus after 10 months of 2mg daily. That’s in par with the dose given to kidney transplant patients. Kudos to the physicians that had the courage to try this. There are allegedly other ongoing studies and cases but hard to find more info.
Here is a link to the 61 year old I mentioned:
The dosing of quercetin + theaflavins is intermittent every two weeks. 1-2 Q and 3-5 T taken at night before sleep. But this is the experiences from one person only.
Give our clinic a call if you would like assistance - we are a concierge practice in Arizona with clients from throughout the US and Canada. Expert in imaging and integrative medicine, and experience with rapamycin and other alternatives for Sarcoid / inflammation. Interestingly there appears to be connection between sarcoid and some breast cancers, where we have seen mTOR inhibition beneficial for both.
Hope you are feel better. I was recently diagnosed with Sarcoidosis after having severe chest pains and fatigue. I am slowly recovering. I have started to self administer 5mg Rapamycin proceeded by 2mg Ketoconazole one of two hours before for better bio-availability.
Too early to say if this is having an effect, but I would be happy to exchange experiences.
Thanks for sharing. I’ve continued with Rapamycin 6 mg, once a week. In my last follow up 6 months ago, ejection fraction was up from 41% to 46%. Even though the cardiologist warned against taking Rapamycin, we agreed to disagree. Next follow up is in 6 months. If I reach 50% neighbourhood I’ll know for sure it’s thanks to Rapamycin. Who known, maybe my doctor will give in and learn something from this.