November 20, 2020
Starting Vyepti tomorrow, anyone have an experience with this infusion yet?
Nancy Harris Bonk37 Moderator
November 23, 2020
I don't!! But will look forward to your update.
I'm sure others will be along soon to share!
Wishing you a low pain day,
Nancy Harris Bonk, Patient Advocate/Moderator
November 23, 2020
Hey, Dana, how are you feeling? I'm curious to hear how your infusion went if you feel comfortable sharing. Hope all is well! -Melissa, migraine.com team
Hi Dana, I just found this website and saw your post from two weeks ago. Has Vyepti helped you any? I took my first infusion (the “regular” 100 mg dose) three months ago. The infusion was supposed to be months sooner, but the pandemic caused my provider to be unable to get the drug sooner. I am on Social Security Disability because of multiple conditions, including severe daily migraine. Yes, migraine EVERY day except 8 days in 3 years, when the migraines I’ve had since age 12 went to a totally debilitating level and I could no longer work. Vyepti was no miracle for me, yet it did lessen the severity and frequency some. It honestly worked better than anything I’ve ever tried in all my years with many specialists in five states, including John’s Hopkins, Ohio State, University of Florida and University of Tennessee. I realize we’re all different and drugs and therapies don’t work the same for all of us. I was thrilled to get ANY help, but unfortunately it wore off in less than 1 1/2 months. I’m now in the process of trying to get insurance to approve the 300 mg dose for my next infusion on December 10. They first rejected the request and I appealed the decision. They told me yesterday that I am likely to get it if the doctor resubmits some additional information. I sincerely hope you have gotten some relief with Vyepti.
December 3, 2020
So, I had my Vyepti Infusion on November 19th. I got a mild sore throat after (the nurses told me to expect that) and they told me some patients have complained of constipation (did not have that, thankfully!).
Sadly, I have not had ANY relief from my migraines. Maybe it’s to soon... I don’t know. I have chronic debilitating migraines (well, all our migraines are debilitating), I have them 24-7, am on SSDI and they have not been responsive to treatment including CGRP injections, inpatient Lidocaine and inpatient Ketamine infusions... just to name a few. I have a follow up appointment on 12/7, so I hope to get a little insight as to what I can expect going forward and my next infusion is in February. My insurance has already agreed to pay for it and as long as I’m not having side effects I’ll continue to do them... maybe as it builds up in my system...? There’s still so little known about this med so I’m not chalking it up as a failure yet. I can’t... I’m out of options really. I was scheduled to have Deep Brain Stimulation Surgery back in April and Covid pushed that back, they were set to do it in November and then I chickened out..... the data was not good for migraine patients and it was brain surgery for goodness sake. So I trudge on with Vyepti and will continue to update. Wishing you all a gentle day
December 4, 2020
Hi piercingpain. I really hope you'll be able to get the 300 mg dose. Hopefully you'll see more relief. Here's an article you may find helpful. https://migraine.com/news/vyepti-first-intravenous-preventive-treatment-approved/
April - Migraine.com Team
January 21, 2021
Update: So unfortunately I had no luck with Vyepti. Not even a smidge. I don’t discourage anyone from trying it, because I had ZERO SIDE EFFECTS!!!!. Just didn’t work for me.
January 22, 2021
Thanks for the update