Sudden Vyepti Failure?
Hello,
I have documented my experiences with Vyepti here: https://migraine.com/forums/vyepti-1#reply-239691 .
Since being on 300mg, I have had what I would categorize as a fairly successful experience with it. After each of 5 infusions (each 12 weeks apart), I have gone anywhere from 6-11 weeks without even one migraine, and generally speaking ... the migraine frequency after they start again (i.e. after the 6-11 weeks) has been about half of what it was before I started on it.
However, since the last one on April 30, here are my stats:
4 migraines over first 9 days after infusion
5 migraines over first 15 days after infusion
7 migraines over first 23 days after infusion
8 migraines over first 49 days after infusion
So compared to going 6-11 weeks with no migraines at all, this is a distinct change and a disappointment. It is almost like I received a placebo - completely ineffective. I checked with the infusion center and they claim that their system indicates that 3 vials (100mg each) were scanned.
Has anyone heard of a situation where a medication (specifically Vyepti) has so dramatically switched gears like this and appears to be ineffective?
I went through a number of different anti CGRP medicines, and eventually landed on Vyepti as the one that worked, even though it was not perfect. But after about a year, it stopped working for me. Same thing as you, just a sudden change, with no warning or reason.
I have tried botox, which did nothing but make my face look younger. For a bit.
Now the only thing that I am doing is to get a nerve block on my neck and face, in my eyebrows. That is a lidocaine medication that numbs the areas for a time. And while they help for perhaps a few weeks, they don't stop things. And to be honest, they are extremely painful when getting them.
My neurologist even told me that once he had a female patient who got the first shot in the eyebrow and left, saying it was just too painful. She came back in a few hours to get the next side done, but I understand how she felt. And of course the large amount of medication injected under the skin makes a swelling that looks like you were either on the losing side of a bad fight or stuck you head into a beehive for a few minutes.
As someone with migraines for over 45 years, I can only tell you to never give up. Sometimes it is a matter of a different combination of drugs that do the trick. And for myself I have found that if I ever found something that worked for a bit, maybe even a year, eventually it would stop and I would have to again seek out a new combination.
The only thing that ever has actually been truly effective for myself is when I would get an intractable migraine, to get a very strong opiate and a large amount of an anti nausea medication. Sadly that is not what neurologists want, and no medical facilities will typically do it anyway.
