It seems like it’s been a lifetime since early 2020 when the new migraine medications were hitting the market. If you want a refresher I wrote about Reyvow, Ubrevly, and Eptinezumab (commonly known as Vyepti) back in February.
This year, I introduced Ubrelvy into my migraine toolbox and after 6 months, I think it’s a fair time to share my own experience with it.
My Background with Migraine Treatments:
I’ve had chronic migraine for over 6 years, migraine for over a decade. In the last 6 years I’ve trialed through the vast majority of medications that are on the market for migraine. My journey, like most people’s started out with anti-depressants as a first line treatment. I then moved through various blood pressure medications and anti-seizure drugs as preventative options.
I’ve had the most success with an anti-seizure medication that I take daily. Success is said lightly, as I am still considered severely disabled by migraine, but the Keppra that I take helps reduce the severity enough to make a notable difference.
In that time, I’ve also gone through a variety of abortive options with varying success, but up until now, the options like Fioricet and DHE Nasal Spray (Migranal) leave me with substantial side effects ranging from feeling like I’m in a drunken state to increased symptoms like nausea and vertigo to an incredibly tight jaw that prevents me from eating.
With the addition of the CGRP antibodies to the migraine market, a lot of the migraine treatment world has shifted and research is becoming more promising.
I was one of the first individuals to try the first approved preventative – Aimovig – in the Summer of 2018, but I was unfortunately not one of the lucky super responders.
Super responders were patients in a similar situation as myself – disabled by migraine, unable to work, severely limited in their day to day life – who upon starting a CGRP preventative had a dramatic drop in migraine days and essentially got their life back.
My body didn’t respond well to Aimovig. At first it was just a disruption to my appetite and digestion, but after my second dose it evolved to severe muscle cramping, bone pain, fatigue, dramatic hair loss, constant nausea, and a lower response to my other medications. I ended up bedridden. With the support of my doctor, we discontinued the medication even though at the time reactions like mine were not well documented since the drug was so new to the market.
My reaction was not uncommon, but compared to the relative migraine population, only a small percentage of people had severe reactions. If you want to read my entire piece on my experience you can find it here.
Due to my reaction to Aimovig, I did not choose to try the other two injectable CGRP preventative drugs (Ajovy and Emgality). Because of how sick I already am, I have to be cautious in trying medications and different therapies so that I don’t cause more harm. I personally believe that chronic pain patients have the right to take breaks from being lab rats, so after my failure with Aimovig and subsequent failure of Botox I spent a year focusing solely on lifestyle changes.
When Ubrelvy reached the final stages of drug trials at the end of 2019 and was slated for approval I was finally in a space where I was ready to try something new. Ubrevly is different than the preventative CGRP medications because it is a much smaller dose.
For me, this made it safe to try knowing that the half life of the medication was incredibly short so a trial abortive was a low risk for long term effects.
Getting Approved For Ubrevly
Aside from getting samples from my Neurologist, actually acquiring a prescription was an uphill battle.
The samples were relatively inconclusive. The first dose I took worked almost immediately, with lasting relief, and no side effects. The second dose might as well have been a sugar pill. This meant I was requesting a $3000 medication that might work.
For my insurance (Tricare) – and likely most insurances – a prior authorization was required to be submitted with the prescription. A prior authorization essentially argues to your insurance company that the drug being prescribed is medically necessary and that no safer or cheaper option can be used as an alternative.
Being brand new to the market means that no generic medication has been developed yet, which often drives down drug prices significantly.
Then there’s step therapy requirements, meaning insurance needed documentation that I had already tried and failed other abortives like triptans, n-saids, and basic over the counter drugs like an advil. Thankfully in my case, I’d failed these so my doctor just had to confirm that.
I spent well over a month going back and forth with my doctor’s office and my insurance and my pharmacy to get the proper paperwork. Initial prescriptions were submitted in the wrong place. Paperwork was only half filled out. My doctor’s office wasn’t returning calls to the insurance company because staff was reduced for COVID precautions.
Every week my full time job was essentially calling back different locations, reconfirming what was on file, and getting updates to pass along to the next party. But, it got approved and by June it was on it’s way to me.
How Ubrelvy Has and Hasn’t Worked For Me
I kept putting off this article, hoping that one day I’d wake up feeling awful, take my 100 mg Ubrelvy dose and it would work. And I’d tell you this hour by hour love story of a medication that was The One.
That may be someone’s reality, but it isn’t mine.
This morning I woke up in a level 8 pain – just low enough that I could manage to eat breakfast, too high to look at any screens or turn lights on. I took a single dose, went to lay down, and nothing changed. Nearing in on the two hour mark, I remained at the level 8 pain and grabbed ice packs to soothe the aching pain at the base of my skull and between my eyes.
I did a bit better with lunch, and went to lay down a bit more. I think around hour 3 the pain began to waiver.
I had a few bursts where I was able to do some tidying, but basic conversation showed me that it was an illusion and I quickly could bounce back to the severe pain.
At 6 hours after the single dose, I feel the pain consistently moving towards a 7 where it probably won’t shoot up any higher. But I am aided by a dark room and my Allay Lamp which may be helping reduce the pain.
The truth is, Ubrelvy isn’t an instant fix for me. I can tell that it does work through my system, and based on my notes gives me a few days of lowered pain after taking it.
The most noteworthy aspect of the medication is that I take it without experiencing any side effects. No change in heart rate. No nausea. No odd sensations coursing through my body as the medication is absorbed into my system. No dehydrating effects that cause abdominal pain. No “drunkness” that I often feel from a Fioricet. No nasal constriction and tightness in my jaw that I feel from DHE.
On some occasions, I have noticed relief within 2 hours as advertised. I’d estimate it’s roughly 30% of the time.
12 Month Ubrelvy Update: (4/24/2021)
Going on 12 months since having access to samples, I thought I’d give y’all an additional update with new observations.
I can say with confidence Ubrelvy works 40% of the time for me and I am currently in the process of getting more effective results. I have personally discovered that I am more often than not treating my migraines too late. When I compare my successful treatment days with my unsuccessful ones, successful treatment mostly happens when I take medication within 12 hours of my migraine starting or progressing to a worse stage. Unsuccessful treatment consistently falls when I take medicine upwards of 12 – 24 hours (or later) into a migraine attack. This is consistent across other medications as well.
If I were to isolate days when I used Ubrelvy early enough over the last few months I would say that it has closer to an 85% success rate.
For me, success looks like a reduction by at least two notches in pain – usually bringing me from moderate/severe down to a low pain and reduction in symptoms like light and sound sensitivity and muscle stiffness, particularly in my neck. I also include the pain being reduced for a minimum of 12 hours as a measure for success.
After 12 months I can confirm Ubrelvy lasts longer than other migraine abortives, often giving me lower pain for 24+ hours.
I think my most critical 12 month observation is that this drug really does work well for me. Despite not being able to narrow in on why it works when it does, and why it doesn’t work, I have had some of those instances where I take it and it works exactly as advertised, even on my most painful attacks.
I said that one day I wanted to have my hour by hour love story of a medication that works like a charm, and sometimes Ubrelvy does that for me. Sometimes, I take it – often feeling a tad worse before I feel better – I lay down with some ice packs, and within an hour the pain begins to break. I feel myself moving back towards consciousness, like life is being breathed back into me. By two – three hours, brain fog and sensitivities melt away. Though I am rarely pain free, I get a lot of functionality back and can carry on with my day, still remaining conscious of the fact that overworking can bring the attack back or start a new one. Typically over a day later, as evening progresses I find pain may begin to trickle back in. It isn’t a great love story, but it’s better than no love story at all.
What My Experience Means Going Forward
The biggest thing going forward is that I have a medication I can take that I know will not leave me with unwanted side effects. I don’t have to be fearful of the medication and waiver over if I should take it.
Secondly, there are other medications of this variety being developed and researched. I would like to try Nurtec – the second CGRP abortive medication and evaluate how it works compared to Ubrelvy.
There’s also research being done on using these low dose abortives in a preventative fashion. If I didn’t respond well to the high concentrations of the injectable CGRPs, there’s a chance the lower dose over time could be more tolerable. My own experience with the lack of side effects and the longer lasting relief support this theory.
It also suggests that the drug is relatively safe, so unlike many pain medications on the market, the risk for developing rebound headaches is low.
Overall, the new medications are incredibly promising and bring a lot of hope to the migraine community. If you’ve tried Ubrelvy and want to share your experience with it drop a comment! I’d love to hear from you.
Regarding Splitting Ubrelvy In Half: (click on image to click through answers from other people using Ubrelvy and Headache Specialists)
**disclosure: none of what is written is intended to be a substitute for medical advice and if you’re considering starting or stopping a medication you should consult your doctor. This piece is solely anecdotal to serve as information for people seeking to learn about other patient experiences with Ubrelvy. This piece is in no part sponsored by Allergan Pharmacies.