Question re Sirolimus side effects - how long do they last

Hi all

I have just started the Sirolimus trial and am feeling sick, have a headache, and tummy cramps.

I just wanted to know if anyone has been on this med - how long does it usually take for the side effects to settle down?



I think @talloak, @Nathalie, @xtina and @Mel1315 have mentioned sirolimus. I’ve also found a post linking to a Facebook group if you have access to Facebook.

Hopefully we can find you some friends to talk to.


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Thank you!

I found that taking it diluted with orange juice helps a bit - but if anyone can let me know how long it takes for side effects to calm down would be awesome!

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Hello @Writerchick,
I have to confess that I did not take up Sirolimus medication for my multiple dural fistulae. At the point when my neurosurgeon told me that ‘this was my only option’, a number of pretty dreadful things had happened with my care and the response of my neurosurgeon was that it was ‘nothing to do with me’. This didn’t inspire me with any confidence or trust. I also didn’t like the way that my diagnosed PTEN gene defect became the easy excuse for my entire physical state. I accept that I have a vulnerability for blood vessel instability but I couldn’t find anybody who could answer my questions about the overall benefit of Sirolimus medication for adults, particularly women.
This was roughly 1.5 years ago and approximately every 3 months, I have had a head MRI where the results have not shown any dramatic changes…BUT in December, I am now having my first cerebral angiogram under general anaesthetic with my new neurosurgical team in London (sick with fear doesn’t even go close to how I feel). I am still aiming to investigate what might be happening with my immune system and also what my surgeon might have done with his surgical techniques that was wrong for me, contributing to my fistulae recurrence.

This is the context of my knowledge and awareness of Sirolimus. I guess I just wanted to try and encourage you a million times to ask your hospital questions again, again and again about the proposed pathway of your Sirolimus trial. They should be responding promptly to your sickness, headache and tummy cramps and you should feel heard. This is easy for me to say when I don’t have the nausea and tummy cramps but I remember how I couldn’t get up from the floor when they were at their worst before my endometrial cancer was diagnosed and treated shortly after my second craniotomy.

Headaches are a law unto themselves. Perhaps when you feel that you have a slightly better day, email/phone the secretary of your surgeon or interventional radiologist. Is there a kind nurse? Who is in charge of the trial and who do they work with? Perhaps you could speak to them? I remember that a cancer geneticist told me that they would have work out what dose was right for me and that would mean a number of regular blood tests.

I hope that some of this might help a little bit. Tons of thoughts