As many of y’all know, I got really sick with migraine and reached my own breaking point as the latest and greatest developments in migraine medicine were hitting FDA approvals. I knew I was disabled by migraine in the Spring of 2018 and my headache specialist had a little glimmer of hope with the introduction of CGRP medications.

We fought hard to get Aimovig approved, the first injectable to hit the market.

I wasn’t in the super responder group, I actually fell in the category of “weird reactions we won’t understand for years” that doctor’s hastily brushed off.

However, what I’m most worried about now regarding my current abortive (Ubrelvy) is what we saw happen to some super-responders and some regular migraine havers with the first three injectable medications: after a year they stopped working.

Patient forums across mid to late 2019 were full of people discussing various changes they were making, swapping between the different injectables with a heavy emphasis on hoping one of the others would return folks to the migraine reprieve they had been blessed with. There’s nothing worse than reading about people who got their lives back and then suddenly were creeping back towards the dim reality of chronic migraine.

As we entered 2020, additional developments surrounding CGRP were ready to hit the market: the gepants. This is what we now know as Ubrelvy, Nurtec, and Qulipta.

These are pill versions that offer us relief at the onset of an attack compared to the injectables which were designed for preventative use. These pills also offered many of us who had failed or reacted to the injectables an option to benefit from CGRP with the promise of shorter half lives should anything not go well.

I received Ubrelvy pretty quickly upon release, so Spring of 2020 with access to the prescription by that summer.

This was the first drug that really worked for me and relative to my other options: didn’t leave me with horrendous side effects that rendered me just as useless as the migraine attack. (you can read my first Ubrelvy post here)

Initially getting Ubrelvy I had my own problems in understanding when to treat and was still of the philosophy to simply not take abortive medication. The first few months I was lucky if I used it more than twice. By the time I began to take it more frequently, I was not taking it right.

It took until part way through April of 2021 to realize I needed to better understand how my medication works – turns out I was very frequently taking my medication way too late in an attack, but also occasionally taking it before my pain hit a certain level so it simply didn’t work. I was averaging about a 40% success rate in Ubrelvy decreasing my migraine attack.

I set new parameters for myself which included: treating a migraine within 12 hours of onset/or increase in pain, and vastly limiting attempts to treat moderate pain, waiting for it to get to severe. Within the adjusted parameters, the success rate from the time I’d monitored would skyrocket to 85%.

With these changes by the end of summer I felt a lot more like my medication was working when it should and for the next decent period of time I often felt as if other health conditions – birth control changes, arthritis flares, medication reactions, neck strain injuries – could always be pointed to as the reason my medication wasn’t working as effectively.

The problem with this however, is now I’ve reached a point where by all accounts my migraines are completely stable and consistently where they have been in other “in-between” periods, but the Ubrelvy just isn’t giving me the kind of relief I need.

What I have seen over the last three years while on Ubrelvy worries me a little.

My time where I experience “pain freedom” has dropped dramatically from multiple days (when added up, not consecutively) a month to maybe, if I’m really lucky 6 hours each month with many months simply not having any pain freedom. This has correlated with an increase in what I would consider background level pain despite small decreases in moderate to severe pain.

The real evaluation comes in not so much in evaluating my baseline migraine constantly swinging between 33% and 46% of my month in moderate to severe pain, but in the composition and more detailed spread of what those migraine attacks actually look like.

For months now I have felt like when I go over my end of month numbers, surely this month was worse than last month, and then I go over the end of the month numbers and it’s the same!

But something is wrong.

Take January 2022 as my first example. I treated 8 migraine attacks, 7 with Ubrelvy. 6 of these Ubrelvy attacks were not only effectively treated on a scale of 4/5 or 5/5 but the relief lasted 18 or more hours except for once where I only had about 12 hours of relief. This month my numbers showed I had 41.9% at or above what I consider a level 7 pain. I had 42 combined hours of pain freedom. So we’ll summarize and say 75% successful lasting treatment.

Relevant other impacts in January of 2022 I was experiencing Menstrual migraine in prolonged cycles.

Now let’s look at January 2023 when I treated 10 migraine attacks all with Ubrelvy. 6 of these attacks were effectively treated, with 1 additional attack being treated “okay enough” at 3/5 relief. Only 4 of these combined 7 attacks had relief lasting 18 or more hours. This month I had 36.3% of time at or above level 7 pain with 24 hours of pain freedom. Now we’re at 40% successful lasting treatment.

Now we can look at July 2023, with 10 treated attacks all with Ubrelvy. 7 of these attacks were effectively treated, with only 5 providing the long lasting relief. This is after a month of June with 11 treated days and only 5 effective days of which only 3 provided lasting relief. My percentages hover around 40% with only 12 hours of pain freedom. Combining the two months, we’re down to 38% successful and lasting treatment.

What I am seeing most prominently is a slight decrease in how many attacks are effectively being treated and the pain returning much sooner than the desired 18-24 hours. These changes respectively drop from 75% in 2022, 40% in January 2023 to a two month average of about 38% this summer.

One of the main reasons for fighting to get more Ubrelvy was because I recognized that treating a migraine every 3 days wasn’t effective enough and I had many attacks each month that simply went untreated. In theory, being able to treat sooner and more effective should have lowered all my monthly averages.

Instead, we’ve dropped from 6 of 7 attacks being relieved for a long time to between half and a third being relieved while simultaneously moving the bar from “12 hours of relief” being the short end of the spectrum to closer to 8 hours.

This is then combined with it taking longer to kick in. Typically “relief” is measured by where you are two hours after your dose, but I have found more and more that relief doesn’t come until hour four.

And so, I know I can take my meds more often, I have enough meds to do so, but I am now plagued with the constant feeling that I keep taking meds that don’t even really work anymore. To the point where I am genuinely shocked when they work as advertised.

Genuinely shocked my meds worked is not the kind of response that should make anyone in the headache and migraine world feel very good.

So I pose this question further to the community, regarding experiences with any of the gepant abortive medications (Ubrelvy, Nurtec, and Qulipta): Is the effectiveness of these meds waning over time?

As I’ve listened to other community members over the last few months, suddenly everyone I know who had been as satisfied as one could be with Ubrelvy – perhaps averaging 60% success rate and in me and my friends cases, still very disabled – has begun to search for a different abortive.

There is a dark cloud hanging overhead, with too many of us in the exact same boat expressing that our meds just aren’t working like they used to, even when we double up doses or try combination therapies.

Could our time be running out? With no new treatment on the horizon that promises a different mechanism beyond CGRP to turn to, where do we go from here?

Will Ubrelvy just continue to work less and less until it’s basically a sugar pill?

Is the broader migraine patient population also seeing these problems arising?

Maybe it isn’t enough to go off of, but if I suddenly feel like my migraine disease is much poorly managed and I’m back totally wasting my time taking abortive medications… maybe that’s more than just a vibe.

A.