Preventive drugs survey results

Thank you to all who participated in our recent survey on migraine preventative medications. Your responses are invaluable, and we believe the findings will provide significant insights and knowledge in the field of migraine management.

The purpose of our survey was to collect detailed experiences from individuals within the community, aiming to assist others in making well-informed decisions to potentially lessen their migraine attacks occurrences.

Introduction

To set the stage, let’s remind the concept of a preventive drug. These are medications taken regularly to reduce migraine attacks frequency, not the ones you use when an attack starts. Whether it’s a daily pill or a monthly/quarterly injection, the goal is to maintain a consistent routine to prevent the onset of migraines.

Our survey unfolded in two stages. Initially, we sought broad feedback, culminating with an open invitation for suggestions. The response was substantial. We carefully reviewed each piece of advice and formulated an updated survey, truly a collaborative creation shaped by community input.

We’re now ready to unveil the key insights from this endeavor.

Before we present the data, let’s briefly recap what we’ve covered in a previous article about the types of migraine preventatives. There’s a wide spectrum, but in essence, they fall into two categories: 1) medications originally developed for other conditions that also aid in reducing migraine frequency, like anti-epileptics, anti-depressants, heart diseases medications, collectively referred to as Oral Migraine Preventive Medication (OMPM), and 2) medications specifically engineered to prevent migraines, which are administered either orally or through injection, all targeting the CGRP molecule in the brain. Botox is in its own category, as it’s not an oral, but it’s initial usage was not to prevent migraine.

Results

The table below illustrates the percentage of participants using each type of medication. The findings highlight that 55,5% of respondents are using OMPM, the drugs not initially intended for migraine therapy. Among these, Topiramate is reported as the most commonly used, chosen by 23.1% of participants to report about. Topiramate is known in the medical literature for its significant side effects.

Conversely, 34.2% (26,6%+7,6%) of survey respondents have opted for the second category of medication, those explicitly designed for migraine prevention.

Preventive used
anticonvulsant (Topiramate, Valproate…) 23.1%
antidepressant (Amitriptyline, Nortriptyline, fluoxetine…) 15.9%
beta-blocker (Propranolol, Timolol…) 13.2%
angiotensin blocker (Candesartan, Irbesartan) 1.8%
calcium channel blocker (Diltiazem, Verapamil…) 1.4%
OMPM Total 55.5%
Botox 8.3%
Botox Total 8.3%
Aimovig (Erenumab) 10.5%
Emgality (Galcanezumab) 8.1%
Ajovy (Fremanezumab) 6.2%
Vyepti (Eptinezumab) 1.7%
Anti-CGRP Total 26.6%
Qulipta (Atogepant) 4.3%
Nurtec (Rimegepant) 3.3%
Gepants Total 7.6%
Others 2.0%
Others Total 2.0%

One might question why OMPMs are more commonly used than the specialized drugs. It boils down to cost-effectiveness. OMPMs are generally less expensive due to their long-standing availability and generic status. Newer anti-CGRP medications are on the pricier side, leading to hesitation from insurance companies to cover them without patients first trying at least two OMPMs.

Let’s delve deeper into the specifics of our findings:

When it comes to satisfaction among those currently on a preventive medication, we inquired about its efficacy. A promising 60.6% of users feel their medication is making a difference. It’s apparent that the success rate varies by drug class: OMPMs are effective in 53.9% of instances, whereas anti-CGRP medications show a higher effectiveness rate at 69.2%. It’s worth noting that 10.8% of participants reported their preventive drug either failed to work or ceased to be effective over time. Breaking this down further, a higher percentage of this concern arises from OMPM users (14.5%) compared to those on anti-CGRP treatments (5.2%). The “cannot tell” category you’ll see in the table largely represents individuals who have recently started their preventive regimen and feel it’s too soon to form a judgment. Others are in the “unsure” camp, uncertain if they’re seeing benefits or not.

Preventive Used (category) cannot tell It works It works, but not as well as expected or as it used to
Never worked or stopped working
OMPM 7.5% 53.9% 24.1% 14.5%
Botox 10.5% 63.4% 16.3% 9.9%
Anti-CGRP 10.1% 69.2% 15.5% 5.2%
gepant 10.4% 67.7% 11.6% 10.4%
Others 26.8% 56.1% 9.8% 7.3%
Grand Total 9.3% 60.6% 19.3% 10.8%
It's important to clarify that our study operates independently of pharmaceutical influences; That said, it’s not surprising that drugs engineered with a specific target—migraines—yield better satisfaction than those originally intended for other uses.

Examining the benefits reported by those who find their medication beneficial, 82.6% observed fewer migraine attacks. Additionally, 55.5% experienced a decrease in pain severity and 40.2% noted a shorter attack duration. A noteworthy 23.6% also reported diminished associated migraine symptoms, such as nausea or sensitivity to light, sound, and smell. The totals exceed 100% as respondents were able to select more than one benefit.

It reduces the *number* of attacks 82.6%
It reduces the *intensity* of pain 55.5%
It reduces the *duration* of attacks 40.2%
It reduces other symptoms (nausea, sensitivity to light/sound/smell etc…) 23.6%

An important aspect of preventive drug efficacy is to understand it takes for preventive drugs to show an effect. Here, oral anti-CGRP treatments, (gepants), appear to lead the pack, with 62% of those finding relief reporting improvements within a month or less. Conversely, Botox, which is reputed for reducing the frequency of migraine episodes, takes longer to show results and is noted to potentially increase attack frequency in the initial weeks following the once-every-three-month injection.

Preventive Used (category) 1 month or less 2 months 3 months 4 to 6 months 7 months or more
OMPM 36.3% 32.1% 19.8% 8.2% 3.7%
Botox 25.4% 15.5% 23.2% 26.1% 9.9%
Anti-CGRP 35.9% 32.9% 21.0% 8.3% 1.9%
Gepants 62.0% 21.9% 10.2% 3.6% 2.2%
Total 37.6% 29.6% 19.6% 9.6% 3.6%

The survey also explored past medication usage and the reasons for discontinuation. Significant disparities emerged between drug classes. The predominant reason for stopping OMPM treatment was side effects, cited by 60.2% of those who discontinued. On the other hand, diminishing effectiveness was the main issue leading to the cessation of other treatments, from 67.7% for Botox users to 44% for gepant users and 64.7% for those on anti-CGRP medications.

Preventive Used (category) Because of side effects It was no longer effective My insurance decided for me. other
OMPM 60.2% 35.1% 2.3% 2.5%
Botox 3.2% 67.7% 16.1% 12.9%
Anti-CGRP 16.0% 64.7% 14.0% 5.3%
Gepants 16.0% 44.0% 36.0% 4.0%
Total 44.5% 44.5% 7.3% 3.8%

Conclusion

In conclusion, our survey has shed light on the real-world experiences of individuals using migraine preventative medications, offering valuable insights into their efficacy and user satisfaction. The majority of participants who are on preventative treatments report a positive impact, with anti-CGRP medications leading in terms of effectiveness.

It is evident that while both OMPMs and migraine-specific drugs like anti-CGRPs and gepants provide relief, the latter are associated with higher satisfaction rates, likely due to their targeted approach in migraine prevention. Despite this, the use of OMPMs remains prevalent, primarily due to their affordability and accessibility.

Participants have highlighted the importance of rapid onset of action, with gepants receiving notable mention for their quick relief. However, the journey with preventive medications is not without its challenges, as some individuals experience side effects or a decrease in drug efficacy over time, leading to discontinuation.

Our study, conducted independently from pharmaceutical interests, emphasizes the importance of personalized treatment plans and the need for ongoing research to optimize migraine management strategies. The community’s active participation in this survey has been instrumental in enhancing our collective understanding, and it underscores the significance of patient-centric research in improving health outcomes for those living with Migraine.

Jenny from Migraine Buddy
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