Aimovig

[edgewater100]

Anyone try this for migraines yet?

[MaryF Administrator]

Not something I have tried. Let us know how it goes, is your main Hughes Syndrome/APS consultant prescribing this? MaryF

[edgewater100 in reply to MaryF]

No,I am just wanting to know if anyone with APS has tried it,I am re trying Botox with new Neuro.

[KellyInTexas Administrator]

I have it in my fridge at home, but did not start the injections.

They were prescribed to me by my neurologist who has a good understanding of APS.

They block pain.

While I was waiting for injections to come in, I went into very early CAPS, ( my Rheumatoligist called it pre- caps, or very early stage caps) so I’ve been prescribed Rituximab. I’m waiting for clearance from Rheumatoligist and Hematologist to give blessing on aimovig.

[Tofino5]

This was recommended to me by my neurologist and I am considering it. I also would be very interested to know if anyone takes it and how they are doing.

[KellyInTexas Administrator in reply to Tofino5]

It’s a biological. ( protein fragments: monoclonial antibodies / proteins/ from mice)

I think you should give it a try, Anita, as long as the Rheumatoligist we both have in common gives it the thumbs up for you.

I only say this because of your propensity to so many alkergies- so common with Sjögrens .

[Tofino5 in reply to KellyInTexas]

Not sure I follow. Do you mean that biologics are less likely to set off allergic reactions? I read the aimoveg site on Facebook and the reactions to it seem pretty varied. Some glowing successes. Thanks Kelly.

[KellyInTexas Administrator in reply to Tofino5]

Sjögren’s patients tend to be pretty prone to have allergic reactions to things.

I think with MAST cell in particular, it would be wise to tun it by your Rheumatoligist just to get her opinion on it. I think they might be more prone to, but honestly I’m just not sure.

In opposition to this , I’ve read that Rituximab reduces migraines in some APS patients. Presumably it’s because the antibodies are being wiped out, this reducing the slushing blood, or the immune mediated response. So in that case it’s not a litmus for the mast cell issue not triggering the headaches.

I was planning run aimovig by her before I started actually paying for it ( the first two are free) but now that Rituximab is in the mix- it’s also a biological, so I’m pretty certain I can’t have the aimovig.

[Tofino5 in reply to KellyInTexas]

Thanks, that’s helpful. I would seek the rheumy’s thoughts first, for sure. Getting off warfarin helped tremendously for quite a while, but unfortunately the migraines are creeping back and getting more debilitating.

[edgewater100]

I was told can’t do it due to risk of stroke