My Experience With the CGRP Preventive: Qulipta

My hand held outward palm facing up holding a small white pill that has been broken in half. Other half pills sit atop a white cap on a pill bottle to the right of my hand.

Qulipta was the second of the recently approved CGRP medications indicated for the preventative use of migraine. Nurtec received approval for preventative dosing last summer on an every other day dosing schedule and Qulipta shortly followed being approved mid-fall.

Qulipta is the first of these medications being called gepants (formally Qulipta is Atogepant) to be an oral pill taken once a day. The progress being made with CGRP’s is huge and addresses a wide range of problems we’ve had with previous medications and existing methods for taking them. Until Nurtec and Qulipta were approved for preventative use the only CGRP options we had were the injectable and infusion versions.

For a lot of people, myself included, these injections came with issues surrounding long half life as they’re delivered on a monthly to quarterly basis alongside general barriers surrounding needles.

Some Background for Why I Chose Qulipta:

Over the last few years since the approval of Ubrelvy I have kind of hit a standstill when it comes to the rest of my migraine treatment. I have been on disability for migraine for just over three years at this point and although I have transitioned away from intractable non-stop migraine pain and symptoms, on average I still experience pain and symptoms that vary between distracting and severely debilitating between 45%-60% of my month. Each month I’m lucky if I have between 12 – 36 non-consecutive hours free of pain and symptoms.

Due to additional underlying conditions including an autoimmune disorder surfacing in this time and accidental run ins with ticks carrying Lyme disease and changes in birth control affecting all aspects of my health, the last two years has been rather up and down where any hint at progress usually is met with taking a few steps back.

I have had success with Ubrelvy more so than any other abortive, but due to the sheer frequency of attacks adjusting the preventative approach also needs to be a part of any strategy we work towards.

Qulipta sparked my interest because of the remarks that came out of clinical trials and the almost immediate reduction in migraine days. Folks were reporting reduction upwards of 71% after the 12 week trials. Now, these trials were run for episodic patients but even with a high chronic frequency the chance at one or two additional days without migraine pain and symptoms a week sounded really enticing. The second area that caught my attention was the way Qulipta was being compared to Ubrelvy more so than Nurtec. I did not have luck with Nurtec, but Ubrelvy has been great for me. This tilted the scales a bit to lend me to believe I would have a better chance at responding the Qulipta.

Regardless it was a 50/50 shot and with no other options on the market available to me, I took it.

The biggest draws for me for Qulipta included the short half life and the ability to continue all existing forms of treatment while trialing the medication. I also had friends with similar symptom profiles as me and similar migraine presentations who were reporting results very much in line with the clinical trials.

Getting Approved For Qulipta

Qulipta set up a program immediately for patients to begin accessing the medication – you can find information on that program here – but as I frequently have to remind my doctors, I have Tricare which means I am ineligible for drug programs.

I worked with my headache specialist beginning in early October to begin requesting Qulipta. We decided on the 60 mg dose because the side effect intensity (for constipation) was reported at being an indistinguishable between the 60 mg and 30 mg dosages, but the therapeutic benefits were higher at 60 mg. We also knew that I could easily break the 60 mg tabs in half if I did experience side effects.

With my insurance, new drugs always require a prior authorization form.

I was actually denied coverage for this medication for a reason that was new to me: they had only approved coverage when a Neurologist writes the prescription. Which, it’s at least a little ironic that a more narrowly focused specialty specific for the indicated use of the drug being requested for approval does not have prescribing privileges.

This is one reason I continue to retain a Neurologist who is local to me in case of emergencies, in which case I now needed to bring him onto the case as a consulting physician who would carry out prescribing.

This was quite an ugly progress even though my local Neurologist was happy to help. Due to the cost of the medication being in the highest tier, I was also looking for an authorization of “medical necessity” which would push the drug cost into the middle tier since no other medications are in that tier that I can safely take.

Due to the back and forth, I did not receive Qulipta until a week into December.

There have been some reports of folks going through the coupon program that there are repeated disruptions on getting refills. Combining this with the elongated process it took to get ahold of the medication anyway, I postponed starting for over a week so there would be leftover medication in case I encountered more delays down the road.

Qulipta Trial 1: 60 mgs

As always, I like to include full disclosure of anything else that may disrupt my results. When I began this drug in December I was only three months removed from and IUD insertion and was still going through the leveling off process with hormones. On this first trial of Qulipta, it was an in between period where I was not experiencing hormonal fluctuations so hormones do not play a role in medication results. However, I did have an increase in overall migraines after insertion and so this time period occurs while I was already above my regular baseline for migraines.

I began my dose of 60 mg Qulipta on December 15th and opted to take the medicine at bedtime. This choice came due to responses to Nurtec making me drowsy and general abortives also tending to work a bit better if I sleep a bit after taking them. Despite being a preventative drug, Qulipta is formulated much like these abortives.

Over the first five days I was doing pretty good and didn’t want to jump to any conclusions. My overall pain was down, though not gone.

A large storm system moved through and normally this would trigger an attack. This storm was followed by awful wind that kept me up all night, disrupting my sleep which would also normally contribute to an attack. But one never came.

I did experience some minor constipation after the first two days but I increased my yogurt consumption and added in a fiber pill at night and that resolved it. I also added a few prunes to my nightly snack.

On day 3 and into day 4 I noticed a slight neck pain. Neck pain is a symptom I get with a few types of migraine but is also a side effect of the tension type pain that co-occurs when my autoimmune disorder is flaring.

On day 5 my regular medicine didn’t work to abort an attack which intensified into some pretty severe pain.

Days 6 through 8 I noticed I was sleeping more throughout the night. Typically I get up throughout the night between 2-5 times to pee and when I’m up I tend to drink more water. This doesn’t usually disturb my sleep as I fall right back asleep.

This however correlates to how extremely dehydrated I was feeling. I was drinking much more water than normal during the day, but because I wasn’t getting up at night I wasn’t drinking any of that water. I was incredibly parched and noticeably struggling to keep my fluid intake high enough.

By the end of the first week I was noticing another pattern. Despite not getting up to pee throughout the night I was still occasionally waking and observing a slightly more severe pain than what I’d gone to bed with. This pain was mostly resolving by the time I woke up, if not by the time I ate lunch the next day.

Days 9 through 12 are when things began to take a clear turn in a negative direction.

On day 9 my joints hurt. Both of my hands ached and that radiated up my arms and into the area of my neck that had begun hurting around day 3 or 4. This was accompanied by a severe worsening of the tension type head pain and a pattern of worsening pain as bedtime approached/into the overnight hours becoming very clear.

It is important here to note that my arthritis is very well managed at this point in time.

Day 10 continued to have an increase in disruptive joint pain.

By day 12 the joint pain had moved to a severe level. I was in pure agony and I was terrified of not only having failed another medication, but failing it so fast and not being able to accumulate data to really give the drug a chance.

With the support of those in my support system, I did not take my dose that night and discontinued my trial.

After two days, my migraine abortives began to work again. On the third day all of my joint pain disappeared.

This is both good and bad.

The good that has come out of this first drug trial is that side effects, both advertised and not, subsided rapidly and this did not cause a prolonged arthritis flare. Additionally, there was a window at the beginning of this trial where I was feeling good.

Arguably, my autoimmune disease seemed to be activated by this medicine and I can’t say with certainty if that occurred by day three or by day nine as it would depend on how we are measuring it. To me, I am pretty sure that the presence of tension type head pain, muscle stiffness, and joint pain are side effects of my autoimmune disorder and these symptoms are completely isolated from my migraine symptoms despite being hard to distinguish at a glance.

This reaction to Qulipta lines up perfectly with previous CGRP medications when used as a preventative. Nurtec caused the tension type head pain and Aimovig caused all of the autoimmune symptoms to show up.

This lends me to believe that my success with Ubrelvy is because it is used in a limited capacity where it is not building up in my system.

Qulipta Trial 2: 30 mg

Now you see, I was just not willing to give up so easily on the groundbreaking medicine that I busted by butt trying to acquire.

One of the issues I have been having since getting my IUD is that I now experience menstrual migraines. I will write about that more in depth another time, but in short many doctors take a more aggressive approach to treating migraine around one’s menstrual cycle when attacks can be a lot worse. And my attacks were seemingly much worse during what was averaging out to a three week long “hormonal” cycle and roughly two weeks of not a cycle.

Despite not having success at the higher dose of Qulipta, I wanted to trial the middle dose: 30 mg and see if this would be a viable treatment for menstrual migraine where I could take Qulipta during my cycle and then have breaks where I’d be off it between cycles.

This would address a few things. At a lower dose, the medicine may be building up in smaller quantities in my body and therefore it may take longer to experience any negative side effects, with the possibility that there’s a dose low enough (Qulipta also comes in 10 mg doses) that could provide therapeutic benefit and not cause my autoimmune disorder to become more active.

This could also make my menstrual migraines more tolerable.

It’s important to note that I had an overlap in symptoms between menstrual migraine and autoimmune type side effects which include: medication resistance and the presence of tension type head pain. Due to previous instances with both menstrual migraine being isolated and autoimmune flares being isolated, these are distinct from one another whereas menstrual migraine responds to more aggressive abortive combo therapy and autoimmune induced tension pain does not and coincides with joint pain.

To test my hormonal + Qulipta theory I waited until my hormonal cycle began. By this point in time, the side effects from beginning my IUD have evened out and have a consistent trackable pattern to them and I’ve moved closer to my migraine baseline prior to insertion.

On February 3rd, I took my first dose of Qulipta 30 mg at bedtime. I also resumed my daily fiber pill to ward off constipation.

This experiment coincided with some dips in the weather that caused short bursts of joint pain, so for the purpose of this drug trial I decided I would evaluate joint pain over at least two consecutive days.

It’s also important to note here a limitation to my dosing: my doctor advised I break my pills in half rather than getting a new script and wasting meds/time and these pills did not break perfectly even. Therefore it can reasonably be inferred I am not getting a precise 30mg dose each night but since I eat one half one night and the other half the next it is averaging out.

On day two I noticed tenderness beginning on the right side of my neck and some general fatigue in my right arm.

On day three overnight I noticed my hip was aching. This was new for me. More importantly on this night I also took an Ubrelvy which provided short, but minimal relief.

On day four I also noticed a deep drowsiness setting in.

By day five this drowsiness became all consuming, the kind I believe people are referring to when they discuss fatigue – a common side effect of autoimmune disorders. For my own personal reference it felt a lot like a few years prior when I was stuck in a fog from Gabapentin.

On day six the tension type pain began at the base of my skull, where the neck tenderness had been. Being mindful that I was on my cycle I tried a Midol – the first half of my menstrual migraine abortive protocol – with the hopes that if Qulipta was doing any good I wouldn’t need the super duper combo treatment. The Midol was completely ineffective just as the Ubrelvy had been a few days prior. I did have a slight reduction in head pain but zero reduction in my neck pain, which is another reason I opted not to add the Ubrelvy into the mix here. This was a strong indicator that I wasn’t experiencing a hormonal tension pain but rather an autoimmune one, and therefore a migraine treatment wouldn’t touch it.

The following day I continued to wade through the thick molasses dredge I found myself in. I also noted that my costochondritis (arthritis like pain but by your breastbone) was bothering me.

For me, this was enough. That was a hint at joint pain and I didn’t have any desire to see any more the experiment through.

The overwhelming fatigue prevented me from doing anything all week. It’s emotionally taxing. Nothing you do or can take seems to combat it. Even on days where my pain was moderate, the fatigue pushes my brain to wander to a very dark place and then prevents me from leaving it.

Qulipta at 30 mg was not working for me and to push myself very close to an edge I did not want to cross or worry about if I could recover from was not in my best interest. I discontinued the trial and decided I would not pursue another trial at the lower 10 mg dosage.

It’s important to note that the dehydration was also present during this week, though not as bad, and I repeated the same pattern of seemingly sleeping deeper as I was not getting up throughout the night to pee.

The day after I discontinued the drug, my energy returned.

In the days that followed I also had a few observations about coming off the medication. Although for the 30 mg dosage I did not experience obvious constipation, stopping the medication allowed my bowels to return to normal processing speeds. Which, to put as elegantly as one can speak of shit, resulted in a rather abrupt 36 hours with a substantial amount of bowel emptying.

What My Experience Means Going Forward

I have a variety of research theories as to what my experience means and how it fits into a larger picture of CGRP as a migraine treatment for individuals with comorbid autoimmune conditions.

Mostly, I know that my second trial at the lower dose of 30 mg did not meet any of the end points I had hoped for. I remained resistant to medications and did not experience a lower threshold of migraine pain while on my cycle. I also did not experience a prolonged period of time before side effects began.

The biggest thing that all of this means is that I will no longer be a candidate for future preventative CGRP medications. This is incredibly disappointing for me as I know much of the research and development funding is continuing to expand the offerings of CGRP targeted drugs – much in the way when triptans were discovered they created a whole arsenal of options for treatment. Likely over the next few years unless research and trials begin on a totally new molecular area of focus, I will not be a candidate to be the next super responder to anything.

I hope what this does from a personal standpoint is affirms anyone else’s experiences with flaring of these other conditions and potentially opens up research into why this is occurring and if there are viable ways to offset the side effects.

From my experience with some of the arthritis medications it is a trade off you simply have to choose. Either you treat your autoimmune disorder or you treat your migraines. Which is, unfortunate.

Thankfully, my Headache Specialist is very affirming of my experience and we will continue to work towards tweaks to my care and explore options as they come up. It is really reassuring to me that despite failing yet another medication I do not feel as if I will be abandoned as a patient or that my doctor will insist these are unrelated issues. At this point I simply have too much evidence for re-occurring symptoms when targeting CGRP for it to be a sheer coincidence.

What’s actually next for me though? Is much brighter than this drug trial was. I have mentioned throughout this piece menstrual migraine and issues on that front and so my next area of focus will be on lessening the impacts of my hormonal cycle on me and on my migraines.

If you’re curious about more in depth experiences on the other CGRP’s you can find them below:

A.

**disclosure: none of what is written here is intended to be a substitute for medical advice. If you are considering starting or stopping a medication you should consult with your doctor. This piece is solely anecdotal and is intended to serve as information for people seeking other patient experiences with Qulipta. This piece is in no way sponsored or affiliated with AbbVie Pharmaceuticals.

2 thoughts on “My Experience With the CGRP Preventive: Qulipta

  1. I take Qulipta as well, and also have cycle related migraines. Even though I’m in perimenopause and have very, very light and short periods (1-2 days of spotting), I still would get the migraines starting days or a week before and then continuing after, probably rebound headaches at that point. I saw a hormone practitioner (NP) who put me on progesterone, and it greatly helps my cycle related migraines!

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