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


Thank you!

I am nearly a month in so I can say at this point they are still sticking around.

I had my dose slightly lowered which seems to have cleared up a rash that developed, and has helped a little with the headaches I am experiencing.

For anyone considering this drug trial - whatever you do, mix your dose with 90ml of orange juice (as recommended by the medical leaflet included) - because this stuff tastes awful. The orange juice helps disguise it some (but make sure to mix well).

Also - take it with food. That is, eat something just before taking the medicine and straight after. This helps some with the nausea.

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I didn’t take Sirolimus but Thalidomide. I had to stop it not even a month in, due to a rash developing on my left then right ankle, top of the fee and then arms. My only other side effect was tiredness.

Sorry, I can’t be of any help. I would suggest you let the Doctors know about the side effets.

Take care

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Thank you - I am really sorry to hear about your side effects on the drug :frowning:

I have mentioned to the team in London about the side effects I am having, and I am keeping a running track. They lowered my dose a bit which is helping somewhat, but I am still not having a fun time with the side effects.

I guess I am really scared to stop even though the side effects are not fun (hopefully they will settle) because this is sort of a last chance saloon for my leg. I have been advised that if this doesn’t work out I have the following options: do nothing, attempt another embolisation (which triggered my CRPS), or amputate.

Because I have CRPS this makes amputation a bigger risk than it would otherwise be (because if you injure an area with CRPS it gets worse and can spread). I don’t want to risk another embolisation because that is what caused the CRPS in the first place (and might make it spread/even worse). But doing nothing is really not an option, the CRPS has spread up to my knee and I am becoming increasingly immobile and suffering more and more with my pain :sob:

Dear @Writerchick,
It’s really nice to get your message (it’s really scary to write to someone and hope that you haven’t said the wrong thing!) and I just wanted to say that you have bucket loads of support and thoughts from me. I think in a drug trial, every question is incredibly important, however small, and it is often the small questions that will lead to a bigger understanding of what is going on and how the trial pathway should be adapted. Sending tons of strength…:slightly_smiling_face:

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