As a part of the continuing patient experience series, this piece is a collection of anecdotal results for the recently approved Nurtec for the prevention of migraine. The following is not intended to be a substitute for medical advice and we advise you speak to your doctor regarding starting or stopping Nurtec.
If you’ve been following my previous posts, I have personally had mixed results with the new CGRP medications.
Nurtec ODT is the first migraine drug of it’s kind, meaning that it’s a gepant that has been approved to take as both an abortive and a preventative treatment for migraine. Ubrelvy prior to it has only been approved for abortive therapy, and Qulipta since approved is designed for the preventative use of migraine.
I discussed my rather lackluster response to using Nurtec as an abortive therapy here, and since my trial on it as a preventative (which I’ll get into shortly) was brief I’ve opened up this larger blog to host additional patient experiences beyond mine.
My Experience On Nurtec as a Preventative
I’ve had migraine for roughly a decade and currently experience migraine symptoms on a daily basis with more than half of my month being spent with relatively disabling pain or associated symptoms. Alongside migraine, I have psoriatic arthritis and symptoms that align best with POTS, along with IBS.
For the purpose of isolating my experience with Nurtec I think it’s also important to disclose that I had an active Lyme infection throughout this time that was undiagnosed and was bouncing between antibiotic and steroid treatments.
My initial experience with a CGRP was with with Aimovig in 2018 and I responded incredibly poorly. I waited to try more CGRP therapies until options with shorter half lives were available to me. In Spring of 2020 I began taking Ubrelvy and have had measurable success with it. I consider it to be my most effective and reliable abortive medication. In Spring of 2021, I tried Nurtec as an abortive and it gave me narrow improvement on one occasion and actually worsened my pain on multiple other occasions.
I chose to hold onto my remaining packages of Nurtec knowing that the medication would soon be approved for preventative use at the same dosing and I would have the opportunity to – under the supervision and direction of my headache specialist – trial it without going through a burdensome insurance battle.
In order to start Nurtec, I had to discontinue my use of Ubrelvy as an abortive. For this trial duration my doctor gave me Sumatriptan as an alternative. I was also told I couldn’t use Nurtec as both an abortive and a preventative, though I’m unsure if this guidance has remained true or was consistent across prescribing.
I started my initial dose of Nurtec on June 22nd in the morning as directed. I woke up with a decently bad migraine that day and had hoped for some of the abortive properties to kick in and help that migraine from exploding, but it did not. I also had much of the deep fatigue and fogginess throughout the day that I recall being a “worsening” effect from my abortive trial. I shifted over to taking the drug at night so I would sleep through the worst of this.
As the week went on I was hit with a horrible tension headache that took up residence at the base of my skull. With each new Nurtec dose, I’d wake up the next day feeling even more foggy and out of it. This reminds me of how I felt when I took Aimovig – my headache type changed and felt treatment resistant and I was much more fatigued and had a large spike in neck pain complaints.
After a week, I discontinued and decided to skip a dose and see how I felt. I skipped my June 30th dose and woke up on July 1st with a clear head and the fogginess almost completely gone.
When I looked back at my migraine patterns for the month, my severe pain jumped the week I was on Nurtec and I had no response to the Sumatriptan I was offered as an alternative abortive.
I noted earlier that my trial was complicated by some other medications, so I wanted to share some brief references there helping paint the picture of how I isolated the Nurtec as the main problem. Throughout the first three weeks of the month (prior to starting Nurtec) I went through a trial on steroids and antibiotics that overlapped. This three week period had 48% of the time being in moderate to severe head pain. I then further isolated the week in which I was on a steroid taper. My moderate to severe pain increased to 52% of the month, but skewed heavily towards moderate rather than severe. During my steroid taper week I also did not interrupt any migraines with an abortive as I was overwhelmed with the amount of meds I was taking which I believe also contributes to the increase.
My Nurtec trial overlapped directly with a second steroid taper but no antibiotics. My moderate to severe pain increased to 78% of the time with large increases in both severe and bedridden severe (which had been 0% during the other three weeks of the month). Because my severe pain increased during this time but had decreased on my first taper, I believe with confidence the increase in pain was primarily attributed to Nurtec.
My primary side effects from Nurtec were:
- increased neck pain and stiffness
- shift in migraine type towards a tension type headache
- drowsiness and fatigue
- treatment resistant head pain
Although I had a negative experience, upon initially stopping I was open to restarting the medication when I had less variables that may be impacting my response to the medication. I ultimately never resumed treatment.
My remaining Nurtec doses were sent back to the company where they performed quality tests to ensure there was nothing wrong with the batch I received which may have caused my side effects. The reports that I received demonstrate the tested product was pure and met all quality standards.
One reason I’ve split this post up to offer additional patient experiences was because I spent the remainder of the summer fighting off Lyme disease which had overlapping symptoms of muscle pain and tension headaches that also made my regular abortives less effective, and I want you to have access to additional anecdotes.
Beth’s Experience on Nurtec as a Preventative
I’m Beth. I live in Vermont and am in my early 40s.
You might know me from Twitter and #MigraineChat.
I’ve had migraine for many years – since my teens – though my attacks quickly transitioned from low episodic to chronic/daily over the course of about eight months back in 2015-2016. I also have IBS and am likely facing a new arthritis diagnosis (psoriatic) which have both made treatment with the CGRP mAbs and gepants more complicated.
Before trying Nurtec, I had tried all the monthly, injectable mAbs (preventive, large molecule CGRPs). I’ve written about my Aimovig and Ajovy experiences on my blog, but the short story is that neither of those worked well. Aimovig also gave me bad constipation: something I was used to dealing with given my IBS, but couldn’t stay on top of even with all the tricks in my bag. I tried Aimovig first, then Ajovy, and then finally Emgality. Emgality actually worked for me a little. It reduced my migraine severity more than frequency, and noticeably improved my function with respect to migraine symptoms. However, it also increased my joint and muscle pain to a point that was as disabling as daily migraine attacks. At that point, I stopped taking all CGRP mAbs.
I also tried both Ubrelvy and Nurtec acutely. Overall, Ubrelvy works better, but really only when I can catch an attack early. This can be hard for me given I don’t have a true break in my symptoms. I experienced some joint and muscle pain while using the gepants acutely, though it was hard to tell if they were exacerbating these symptoms. I expect they might, but but given I do feel not better even when I’ve taken a break from using the gepants, they aren’t the only factor.
Still, I decided to try Nurtec preventively because of the shorter half-life of the oral gepants (compared to the mAbs). I did not have to make any changes to my other meds except to stop Ubrelvy, though that was under the advice of my doctor (not insurance). My saga to get Nurtec approved both to try first acutely, then preventively, was long. Eventually, I ended up getting it approved through a local hospital pharmacy assistance program because my insurance coverage is not great and the pharmaceutical company’s patient assistance program wouldn’t cover me.
I took Nurtec for just under one month. About two weeks after I started it, I noticed my joint pain creeping back up. I thought my migraine attack severity was better, so stuck with it. However, three weeks in, when my period started and Nurtec did absolutely nothing for my menstrual migraine but my joint pain continued to worsen, I gave up.
Aside from the joint pain, I had no other side effects.
I seem to have a small benefit from the CGRPs, however at this point the correlation between them and my joint pain is very strong. My rheumatologist and I have set a goal to find a treatment for what we strongly suspect to be psoriatic arthritis so that I might eventually go back on a CGRP treatment. Until then, they are off the table.
You can read Beth’s other posts on her experience with Aimovig here and Ajovy here.
Some Notes on Navigating Insurance For Nurtec
Personally, I was very fortunate when it came to initially acquiring Nurtec as an abortive.
My drug coverage is through Tricare, making it a military based insurance that prevents me from using the Pharmacy coupon programs. These coupons either provide drugs at little to no cost and can assist in coverage gaps while new medicines are approved so you can be on them for up to a year while you negotiate with your insurance for coverage.
Cost savings programs are prohibitive to disabled individuals who are on Medicare or Tricare like myself, which is ironic considering much of the required step therapy needed to make it through prior authorizations is only doable for people who have been attempting and failing to treat migraine for years and subsequently are on disability.
My personal approval process for Nurtec required a prior authorization from my Neurologist where we demonstrated that 1) I had tried and failed all other abortive therapies and 2) my current abortive (Ubrelvy) wasn’t working good enough. I found this was actually a rather easy process, but again, I didn’t have to go through an additional approval for prevention since I had leftover meds to try before we went the route of prescribing it.
It should be noted that at this time insurance doesn’t seem to be covering Nurtec for both preventative and abortive dosing simultaneously.
Beth shared some useful advice as well, she has Medicare Part D with a state supplement and faced a copious amount of hurdles in attempting to get Nurtec approved as an abortive and again as a preventative. In her words:
“If you can’t get coverage, see if your state has a State Health Advocate. Essentially, this is a lawyer who provides free legal advice on healthcare matters. Mine first helped me navigate the appeal process with my supplemental insurance and, when that looked like a dead end, pointed me to a need-based hospital prescription assistance program that covered my Nurtec prescription. If you can’t find this resource in your state, the Patient Advocate Foundation’s Migraine Matters helpline might be worth trying, too.”
For more information on Nurtec’s copay assistance, you can visit their website here.
Closing Notes on Nurtec
Overall, Nurtec is new and promising treatment that addresses a lot of gaps when it comes to migraine care and CGRP treatment.
This is a live document, so it will continue to grow as additional submissions are received. If you are interested in sharing your experience with Nurtec as a preventative or adding to some insurance tips please fill out the form below. Once submitted I will reach out with a few guiding questions.
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