Sirolimus for pain

Symptoms & Treatment
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Hi all,

Curious if anyone has tried Sirolimus for pain control? I met with another specialist today (who, yet again, cannot do anything for my AVM) and they’re offering me this as a final option. I’m a bit at a loss since the specialist said it works for some and not others, but since this is my last chance for any type of intervention I’m hoping it does something.

thanks

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I don’t know your history, but if this is something that could be related to PROS (a group of conditions related to a gene mutation), or FAVA (a more specific condition within that umbrella), you could absolutely benefit from medication. You might explore a few other more recent options for meds, too.

See my response to another thread here: Surgery post-sclerotherapy - #3 by RLA

<edit: oh, I see my other reply was to your post, too>

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Thanks for letting me know! I’ll definitely be looking more into that now.

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Hi, yes I have tried Sirolimus as well as some other medication like thalidomide. I had some benefit from Sirolimus but I had very bad mouth ulcers. I had to stop taking it as they were so bad. They affected my eating, talking and drinking. Not everyone gets them. I am currently taking part in the PROS trial of Piqray and that is giving me the most relief of anything I have tried. For certain ones of us with the relevant mutations to our genes, I think medications are a viable option rather than surgeries, sclerotherapy or embolisations (I’ve had all three)

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thanks for sharing! I’ll look into getting testing for PROS so hopefully I can get some more information. After doing some research on it, it looks like there’s more cons than pros of doing it. I’ll definitely get another professional opinion on it too.

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I unfortunately didn’t get much benefit from it, and I ended up getting pretty significant edema and the inflammation associated with it worsened the pain some, on top of making it harder to walk (mine avm is in my foot).

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I created a group for people with a PI3K pathway a while ago. I mention it in case it becomes something that helps people to hang together and gain some community. It doesn’t do anything special at the moment – there’s no category for genetically driven symptoms on this website yet, for example – but I mention it in case you guys start to find that being part of a group helps you to find each other and support each other.

https://avmsurvivors.org/g/GenePI3K

Equally, if PROS would include more people or is a better recognised term, I could be persuaded to rename the group.

We have very few people who have identified as either of the Gene groups (MAP2K1 or PI3K) so far but as I admit new users, I try to map anyone to relevant groups to try to build understanding and community. Let me know if anything occurs to you guys that would help you commune!

Richard

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I haven’t tried Sirolimus. I’m currently taking mekinist/Trametinib, hoping it can suppress growth. I’m taking it without having had any genetic testing. My doctors believe it’s too dangerous to do a biopsy to test. Only side effect bothering me is the acne rash which is more painful than it looks. I know it starts to feel like our options are slim. Hang in there..

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I may have to take sirolimus or another similar med for the impact my AVM has on my heart but no final decision has been taken yet. I have a large AVM on the left side of my neck which has a significant impact on my heart and it can’t be treated by surgery.

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