Rapamycin and Shingles

I have been using rapamycin on and off for nearly a Year. 53 years old with no health issues. 6 mg a week was my dosage. 2 weeks ago I had my usual dose and went to a trip to Cuba. Heavy head ache started after couple of days. About 5-6 days later shingles started and went all over my forehead covering ear and around eye.
My doctor could not beleive I have used rapamycin. My immune system is probably not responding. Still terrible head ache and a possibility of loosing my eye.
Anybody had something similar?

3 Likes

Have you had the shingles vaccine aka Shingrix? If not, a severe reaction like this is always possible from shingles regardless of rapamycin use, especially when it affects the eye. Sorry to hear you are going through this.

4 Likes

Thank you very much. I did not get the shingles shot . Hope this thing goes away soon

4 Likes

Rapamune in Europe carries a warning for a herpes zoster in common undesirable effects, but adds that most patients in study were on immunosuppressive regimens, which included Rapamune in combination with other immunosuppressive agents.

4 Likes

Getting my second Shingrix shot soon. Stopping rapamycin for 2, maybe 3 weeks pre and post vaccination.

2 Likes

I have bee on Rapamycin about 8 months. 3 weeks ago I got shingles. I stopped Rapa when I got it. I wonder how long I should wait before I go back on it? Any suggestions? I still have pain but a lot better. I will definitely get the vaccines. I take 6 mg/week.

1 Like

I just got the Shingrix vaccine so I will stop for 3 weeks as it seems reasonable, but would you do that for every kind of vaccine as well?

I’m planning on getting the flu vaccine and I will not take a rapamycin vacation.

Mannick stopped for 2 weeks in their trial and it improved immune function before taking influenza vaccine.

The evidence is FOR stopping 2 weeks before taking a vaccine.

I’ve talked to the researchers about this… I think they paused for two weeks before their trial just to make it a cleaner test of the impact on the immune system (vs. of rapamycin’s effect on influenza). More of a clinical trial design perspective, not a safety issue that was perceived.

I stopped a week before the shingles vaccine, and started rapamycin again a few weeks after just to be safe.

Btw is there a age limit on shingles vaccine in US? In Europe you cannot get it before age of 50 or if you have had already herpes zoster active infection or varicella-zoster virus (chickenpox).

1 Like

The newer more effective vaccine shingrix is also approved in EU for those 18 and above with an increased risk for shingles. Whatever that means. I’m sure you can get it.

1 Like

Will look into it… thx.
But I think this is what I wrote above, already had herpes zoster and/or chickenpox.

1 Like

Are you okay now Faith?

2 Likes