One Year In: A Patient’s Experience With the CGRP Qulipta

Amanda, a white woman with slightly curled brown hair that hits just below her shoulders. Amanda has a great smile in this photo.

The last few years have been an incredibly exciting time when it comes to new migraine research opening up a new class of more targeted medications. For so many people these medications have given them their life back after decades of minimal relief. Early on we began responding to folks who had success as “super responders” – these were people who essentially got their life back with the injectable CGRPs. But, the injectables weren’t for everyone.

One of the latest to hit the market addressed a handful of concerns patients had with earlier CGRP medications. Qulipta is a once daily preventative pill available in three dosages that has a much shorter half life than the injectable medications.

My own journey with Qulipta started just after our featured interviewee’s did and her experience made me excited and confident in trialing the medication. From my perspective, we had much of the same journey so far with our migraines and her early success gave me hope. You can read about my experience with Qulipta here, and although it didn’t work out for me, Amanda’s success has continued and I’m honored that she was open to sharing her journey here with you.

Q: Introduce yourself, general demographics, prior to starting Qulipta, give us an idea as to what your migraines looked like. Were they chronic? How did they interfere with day to day life? Did you have any symptoms that were especially bothersome?

My name is Amanda, I’m a 36 year old woman/mother to a 3 year old little guy!

I was diagnosed with Migraine when I was 18 years old, but always struggled with headaches growing up. I used triptans (with little success) to manage my 1-2 level 8 migraine attacks a month. I had also tried Topamax for a couple years during this time. It wasn’t until 2017 (when I was 30) that my migraine attacks turned chronic.

At this time, I was having daily persistent headache, as well as 15-20 migraine days a month. In April of 2017, I had to take FMLA from my full time job as a school therapist. I never went back. It was at that time that I made the (forced) decision to start my own private practice as a psychotherapist and was working about 10 hours a week (which was all I could manage).

Q: Are there any other conditions you have that may be relevant that you’d like to disclose that may be relative to success/lack thereof or symptoms with this drug.

Other health conditions: Endometriosis, Hashimoto’s Thyroiditis, History of Epstein Barr/Mono viruses (I have a feeling this is what sent my body into a cascade of issues, but doctors scoff at this. Interesting now they taking chronic post viral syndromes more seriously since COVID…)

Q: Were there any particular reasons you (or you and your doctor) thought Qulipta would be a good choice for you?

I had tried most other available options, with the exception of a few that I was never willing to try due to the severe side effects. Usually if there is a side effect, I will get it. I am super sensitive—which many of us with chronic migraine are! I had not tried the CGRP injectables either.

What I liked about this was if I had a terrible reaction, I could stop and it would be out of my system within a week or so. The injectables being in my system for 6 months…I couldn’t bring myself to take that risk.

Q: When you initially were prescribed Qulipta did you face any barriers to accessing the medication? What did you have to do in order to access or continuing access the medication?

I am very blessed that I am married to someone with good health benefits. I did not have any issues accessing this medication once the manufacturer stopped providing me free prescription. I just had to have my doctor file a prior auth, and it is completely free for me (as of right now due to coupon).

Information on the Qulipta coupon can be found here.

Q: You responded well initially to Qulipta, can you describe what that was like? How your migraines changed and what emotionally you were trying to manage during this time?

I responded AMAZINGLY well to Qulipta.

Within the first week, it was almost scary. I hadn’t been pain free for 4 years at that point. I didn’t remember what it felt like to NOT have head pain and it actually made me anxious in a weird (good!) way.

I don’t think I wanted to fully trust it, because I was so afraid it wouldn’t last, or it wasn’t real. In a way, I was right.

After about 8 weeks (and maybe only getting 4 migraine attacks during those 8 weeks) I noticed a gradual increase in attacks, and started to experience some body/joint pain (mostly hips and back) and tachycardia. I also had some fatigue and hair loss.

Q: You eventually adjusted your dosage of Qulipta. What side effects or complications came about to push you to make some changes? How have your migraines and symptoms changed since adjusting your dose?

The tachycardia was the worst/scariest part. My resting HR went from 60’s to 100’s and when walking it would jump to 130’s. I was referred to Cardiologist by my Neurologist. Everything with my heart was fine, but it was unbearable to live with my heart rate like that and it worried me.

We decided to reduce from 30mg to 15mg, and I saw immediate improvement. This did mean that I saw *some* increase in head pain, but as of today, I am still seeing about 50% reduction in frequency and intensity of attacks. I am having about 5-6 attacks a month. Granted, my Headache Specialist okayed me to take Ubrelvy in addition to Qulipta, which many aren’t due to it not being studied. But since I am on such a low dose (15mg versus the typical 60mg) she felt okay allowing this.

The Ubrelvy works for me 9 times out of 10 and will reduce the intensity of the attacks by 60-80%.

I feel like I can have somewhat of a life again. I won’t lie and say that I am not worried about long term effects. But I didn’t have a life anyways, so I’ve decided to live it now while I have the opportunity.

Q: Could you give a generalized timeline of your Qulipta journey?

I started Qulipta almost as soon as it became available in Fall of 2021. It was approved in September, and by the first week of November I had it in my hands. I have now been on it for 1 year.

Q: What are some of the things in your life that you’ve been able to resume or participate in more fully since being on Qulipta?

I have been able to increase my ability to work! I was able to add more clients to my caseload, and not cancel as much on them.

I am not missing out on daily life, major holidays, fun events. I can’t tell you how many events I have missed. Or, spent the entire evening puking in the bathroom (like at my best friend’s wedding rehearsal).

I am not having consistent panic attacks and feeling depressed and hopeless.

Q: What does your whole picture therapeutic kit look like alongside Qulipta?

My therapeutic toolbox:

Daily I take Qulipta 15mg and Magnesium glycinate 400mg.

As needed I have Naproxen 500mg, Ubrelvy 100mg, and Toradol IM 30mg (which I haven’t needed since Qulipta!)

I don’t officially get Botox for migraine! I was too afraid to try the 144 units (OMG!) that is prescribed for migraine. I heard too many horror stories. My neuro suggested trying it cosmetically to see how I did. And I actually think it helps with tension headaches. I see a PA who does it for me, and she was an ER doc for many years. She has several clients who have migraine that come to see her. I am getting a VERY small dose of 30 units, in some of the same migraine places (like along the hairline).

Q: Is there anything you’d like other people to know about your experience with Qulipta, or things you’d wish you’d known going into this process?

I am VERY glad I tried it!

Qulipta has given me so much of my life back—granted, 5 migraine attacks a month still isn’t amazingly fun. And, I won’t lie. I am very anxious that eventually it will stop working (like many people with the CGRP injectables have stated) but trying to just have gratitude for what is!


If you are considering any of the CGRPs or think you may have a migraine or headache disorder the information here is intended only to help share patient and personal experiences, not to diagnose or act as medical advice.

A.

3 thoughts on “One Year In: A Patient’s Experience With the CGRP Qulipta

  1. This is awesome! Thank you – I’ve been on Qulipta for a few months (4 weeks on, 1 week off, due to pharmacist’s inability to order it quickly enough for me). My most recent refill had no interruption. 😁 Looking forward to similar results – nice to read the similar reaction to “good news”.

    Liked by 1 person

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