Hey all. I’m up to new fun again. This time it’s the CGRP receptor antagonist RESCUE med Ubrelvy. I haven’t taken one yet because I only got them yesterday. Another insanely expensive drug. Here in the US it comes in at $100/pill unless you get the promotional program that ends at the end of this year. The promotion is $1/pill. (Yes, you read that price hike right.) But, I’m thinking arbitrage. I’ll religiously fill the script 5 more times thus amassing a supply of 50-60 pills, less what I use. It’s sort of a back door into an injections trial. I wasn’t planning to use it that way. With Botox I live pretty well a lot of the time. There are gaps around the injection schedule. I was hoping Ubrevly might fill some of that in. My Botox was delayed several weeks during the lockdown. It’s taking longer to feel better this time, which I seriously hope is due to the treatment gap and not declining effectiveness. Consequently, I may be trialing sooner rather than later. My head doesn’t hurt much but the mal debarquement boat ride and the aura crap are killing me.
I wanted to try this rescue med as a test before starting Emgality but my Neuro said if triptans have been working for me there is no need. Hope it helps!
Me too. I failed a couple of triptans. I think I’ve trialed 14 meds so far (preventatives and rescue). Plus the OTC stuff, supplements, the Cefaly, the VNS and VRT.
I’ve heard it’s very very low on the side effects, which is always a boon. I just tried Reyvow, which is another new abortive med and it’s great for those of us with a history of hemiplegic migraine (triptans contraindicated). First go was a no-go but worth trying again. I’ll be interested to hear your response to the Ubrelvy.
Decided to take the plunge just now (12:30 pm). I’m not classically migraining right at the moment. It’s definitely a MAV version with light sensitivity, visual vertigo, head pressure, fatigue, nausea, dizziness and a numb hand (that’s one specific to me). I’ll see how it does in 2 hours I guess. Listed side effects are somnolence and nausea. I have two of those right now, so we’ll just see how it affects the others.
45 minutes later (1:15 pm): probably shouldn’t have eaten lunch. Nausea, fatigue and dizziness up. Head pressure down. Everything else the same. We’ll see how it goes at around 2:30.
90 minutes (2:00 pm): Still wobbly and numb handed, but way less nauseous and fatigued. Light sensitivity and visual vertigo are fading. No head pressure.
120 minutes (2:30 pm): I feel about 85% of normal. A little tired. Still a bit wobbly and sensitive in the head pressure areas. My hand hurts rather than is numb which is a sort of improvement that always happens. Still ‘off’ but not non-functional. Took my Theraspecs off and forgot to put them back on. First trial in, I’m thinking that’s pretty good considering I walked in with a MAV migraine rather than the big pain variety. And I can write long technical memos, which is something I cannot do on any of my other rescue meds (fioricet, meclizine, compazine) except maybe amitriptyline which spikes my glucose and causes other issues. Not bad so far. Too bad it’s $100/pill.
6.5 hours later: Final edit. I feel 95%. So far, I’m liking Ubrelvy.
I said that was the final edit. But, I noticed the packaging said it could be effective for up to 48 hours. 30 hours after I took the pill, I’m feeling just fine today.
Nice! Decent response it sounds like. I think also as a major bonus Ubrelvy doesn’t cause rebound, correct me if I’m wrong there. Did I read that right… do you take amitriptyline as a rescue med? I wasn’t aware of that use.
You did. I do. When I’m sliding around in that weird MAV space where everything is surreal, sometimes ami is the only thing that can break out of it. I won’t take it on the regular because of the glucose issues and weight gain. It fights one of my other meds - Metformin. I can’t remember where I first learned it can be used as a rescue drug. I’m thinking my friend Vigs @GetBetter taught me that.
My neurologist said no on the rebounds from Ubrelvy because the mechanism is different but you’re still limited to 10 pills a month. I guess more than that and you should be thinking injections.
BTW, at 42 hours later I still feel pretty good. I’m thinking Ubrelvy broke that migraine cycle. Though it’s 6:30 am and I’m still in bed so I don’t know for sure. But I think I’m good.
Right?! If you ask your neurologist for it, make sure you download the coupon card from the website. HUGE difference in cost. I wonder if you could do a telemedicine call. Mine will give me new Rx just from the patient portal website. Frequent flyer privileges.
I don’t really feel the rocking thing you all talk about. I feel a sort of sliding sensation and this sense that I’m sort of floating/falling. I tend to group it in with visual vertigo and dizziness. And yes, it did help with that.
just catching up on this thread. Em glad you are taking Ubrelvy and it is working for you. I know one other person who takes nurtec also similar and works great for her. She has same benzo like benefits without the addiction.
thanks to Erik @ander454 and one other friend of mine, i might pull the trigger sometime this month on Emgality.
Ami can be used a preventative along with a cocktail of benadryl and even some ibruprofen to stop a migraine in the tracks. I am on a very minimal dose of Ami and i bump it up on days i get a full blown migraine.
You were the one who taught me that. Thought so! My bazooka rescue cocktail for the really bad ones is a LOT stronger. Ami + fioricet + compazine + benadryl. No pain killer at all because of the renal issues and my history of rebound. I do try to avoid taking the bazooka until I’ve been intractable for more than a couple of days. The combined sedatives don’t even work anymore for sleep, they just cause a sort of twilight zone for several hours while my brain resets itself. That’s why I asked for Ubrelvy. I want relief - not an addiction. And I want to be able to function.
I asked for Nurtec but my neuro is more comfortable with Ubrelvy. I forget why. After 5 weeks without Botox, my brain wasn’t exactly firing on all cylinders when I saw her. Been out longer? Slightly cheaper at $100/pill vs. $125/pill? She was hard to understand through the mask and I wasn’t tracking anyway.
If Emgality is the extended release version of Ubrelvy, I’d say go for it. I’m thinking of talking to my neuro about it, too. Not sure if you can do that and Botox at the same time. Or, wait, maybe I am sure you can do both. Because I already am. Duh.
Right, well, my insurance will eventually put a hit out on me. I had to fight for the Ubrelvy and we’re fighting over PT again, too. Idiots would rather pay for an MRI and surgery. There must be a reimbursement scheme in there that makes one better than the other. I find out if I my GP thinks I need another MRI in a week, this time pelvic/lumbar. If I do, I’m taking Ubrelvy on the drive there. MRI makes me see purple for hours and induces some crazy aura that goes downhill fast. That’d be a great test for Ubrelvy.
You know, they ought to have a punch card system for MRI. By now I should get a free frozen yogurt coupon.
Hmm. I wonder if they’d pay for both. Botox is spendy, too. They billed like $3200 last time. My part was about $280 after insurance. Better than the $1100 the first time when I had to meet my deductible. I’ve met my deductible every year since 2016, four of them by March. Maybe Emgality would work well enough I wouldn’t need Botox. That’d be good. My whole head feels covered in mole hills for weeks after Botox. We’ll have to give Ubrevly some more chances to prove itself and then see.
