VYepti
I had my first Vyepti infusion yesterday. My migrines don't follow a regular pattern - they tend to subside for 3-5 weeks and then come back in bunches once every few days for a few weeks.
So I hadn't had one in 3 weeks. I had my infusion yesterday. And I had a full blown migraine later on in the day! I would not have expected that. Anyone had a similar experience?
Also with regards to side effects (I hear the most common one is nasal issues), how long does it take for those to happen. The infusion center said it usually happens in the first day or two.
Thanks
- Thanks so much for sharing your experience with Vyepti. How unfortunate that it seems to have triggered an attack. I wanted to share with you the various resources we have on Vyepti so you can peruse them and see if you share a similar experience with others who have posted: https://migraine.com/search?s=vyepti. Hope this may be helpful to you. Let us know if you have any questions about what you see. So glad you're with us. Warmly- Holly -migraine.com team. Oogh- that is very frustrating to not be able to find a cause and effect for your attacks. There are often triggers we don't realize we are encountering that can not be helped. Even the full moon and the weather can impact our attacks. Here's a (noncomplete) list of triggers that you may find interesting: https://migraine.com/migraine-triggers. All that said, I definitely know my triggers but sometimes my encounters with them don't end up resulting in a migraine. So, I don't know why a full moon one month that causes intense symptoms doesn't trigger me the next. Migraine is a bit of crapshoot that way. Warmly- Holly -migraine.com team. Oh- I'm glad you were careful about who was injecting you. I had a bad experience with someone who subbed in for my doctor and over injected one side of my neck which literally made it difficult to hold my head up for 2 months. Awful when a migraine treatment serves as a trigger for an attack! Catch 22! Warmly- Holly -migraine.com team.
Not yet, Holly. I figured I would wait till the next time I see her. I pretty much figure there isn't anything she can do about it and that she would likely hohum it and not have an explanation. And since I'm not due for another infusion for 3 months, I just figured I would wait.
Hmm- yes I see the point of that. However, if it means that she might recommend you avoid this type of treatment due to your reaction- maybe it would be good for her to have that information in advance of your next infusion. Just a thought. Are you feeling better today? Warmly- Holly -migraine.com team.
Well, my plan is to see her in advance of my next scheduled infusion. So there will be ample time to cancel then. Yes, interestingly enough, this was a relatively short-lived migraine so I'm doing better. And even more interesting, I'm almost certain that when I tried Emgality 3 years ago, the same exact thing happened ... I got a migraine right after my first injection. We'll see.
Huh, that is most interesting. Did the emgality help you at all? Fingers crossed that you will find some relief through Vyepti even if it kicked off its introduction to you with a migraine attack. Great you are seeing your doctor to discuss things before your next treatment. By then you will have more feedback as to the efficacy of this approach. Sending love- Holly (migraine.com team).
I did two Emgality injections. I found them very painful to administer and since my migraines don't follow a pattern, it was difficult to determine whether they were effective or not. I also developed sudden hearing loss in one ear about a month later. Although there has not thus far been a linkage between the two by the pharma or the medical profession, I decided to discontinue at the time because I felt there was risk to my hearing. Right now, Vyepti offers the lowest expense profile for someone on Medicare and since nothing else helps ... and when I DO get episodes they can happen over and over again in a 1-2 week period, I wanted to try something. The totally random pattern (sometimes I go for 4-6 weeks with no migraines at all) means that in order for me to determine whether Vyetpti is working, I need to essentially allow several months.
Thank you for your help and your interest.Thank you so much for writing back. I'm glad to hear more about your journey. I would imagine it is difficult, indeed, to monitor and evaluate the efficacy of treatments with episodic migraines as you are describing. I'm also very grateful for the information about Vyepti being a better (or best) financial option of all the CGRPs. I'm also on Medicare so am interested to hear this.
Regarding the painful nature of Emgality- I have a funny story- I created a video a few years ago to illustrate how to administer Emgality. As I recorded it, I mentioned that it was not a painful injection but then during the video, I found it VERY stingy, and yet I tried to not show it. I later wished I'd been open about how much it really hurt as that would be helpful to our community to see. I still take Emgality and have found the injections less painful into the belly than the thighs (where it really hurt). All this to say I relate to your experience!
I hope you'll keep us in touch about your experience with Vyepti. It's a newer drug so we don't have a deep bench of information about it yet. Thank you for sharing! Warmly- Holly -migraine.com team.
