Long term side effects of Aimovig?

@lisalucier
Thank you! 😘

@erickthompson - Hi. I wanted to let you know I moved your post here so that you could return to this existing discussion on erenumab-aooe (Aimovig) where you'd been chatting before:

- Long term side effects of Aimovig? https://connect.mayoclinic.org/discussion/long-term-side-effects-of-aimovig/

Also tagging members such as @hedjhog @msb18 @covidstinks2023 @mojo244 @jrsjc @tbgreif625 @annew21 @d1swimmer to join in and speak to whether they have had any cognitive or other issues with this medication.

Erick, what does your neurologist propose you do at this point with the medication and the cognitive issues you've noted?

I've been having severe migraines starting when I was a preteen. I've had some relief from the normal medications (triptans, botox, etc). I started Aimovig in summer 2020, and it has worked wonderfully. It drastically reduced the number and severity of my headaches.

However, I started to get new symptoms around the same time. The first was a numbness/tingling that I thought was a stroke (one side of my body was numb) but a visit to ER resulted in "complex migraine". I've had periodic numbness/tingling in my legs, forehead, and sometimes arms, and what feels like a tension/knot in the front part of my brain. Some peripheral hallucinations and some disorientation.

But the biggest impact has been problems with communication and working memory. I have episodes where I struggle to speak/write and have a really hard time expressing myself. During the same times I have problems with losing tracking of tasks midway (start a multi-step and lose track on step 2) and getting confused with simple things. These symptoms seems associated with the numbness/tingling, but I'm not certain. I also have what I can only describe a migraine like aura as well. The problems are increasing in intensity and frequency.

I'm seeing a neurologist, and no results from normal tests so far. I've seen a few reports of tingling/numbness with Aimovig and similar medications. Cognitive issues aren't associated with these medications, but the timing lines up and nothing else has changed.

Has anyone who uses Aimovig (or related) had these? New numbness/tingling, brain fog/communication problems, confusion etc?

Thanks,
Erick

@erickthompson they still don't know what is causing it for me. I saw a new neurologist and he said to stop the Aimovig, he believes it is some sort of migraine related issue but we can't know until my body is clear of Aimovig, which takes couple months. I will let you know if anything they find out

Hi @shivaamedeo - I am dealing with a similar issue of tingling in my face/tension feelings in head. Was the infarction the root cause? I also started Aimovig some years ago, and am trying to track down the cause of these symptoms and some other cognitive issues. Thanks!

@shivaamedeo - so sorry to hear you've still been struggling with all those symptoms. Since you mentioned an infarction in your brain, or ischemic stroke, I wanted to be sure you noted this support group on Mayo Clinic Connect

-Stroke & Cerebrovascular Diseases
https://connect.mayoclinic.org/group/cerebrovascular-diseases/
You'll see all the different discussions members have started on stroke and related conditions there. Also, you'll note a search function within the Stroke & Cerebrovascular Diseases you may want to use to look for aspects of ischemic stroke, symptoms or something else.

Hi , still struggling with all those symptoms, the neurologist said it can not be side effect of Aimovig as I gave been taking it 3 years and these started 4 months ago. They found an infarction in my brain though so doing more tests to see what is the issue. The face numbness is constant these days unfortunately

Hi, @shivaamedeo - I see you've joined Mayo Clinic Connect recently, so I'd like to welcome you.

A few days of shortness of breath, tingling in your face, tension in your head and fatigue sound difficult. From what you said, it appears that you talked to your prescribing provider about the symptoms and that they examined you thoroughly.

It sounds wise to consider your (newish) medication, erenumab-aooe, subcutaneous route (Aimovig) as a potential culprit for the symptoms you've experienced, especially with the "normal" results of your testing.

I've found that when I take a new medication, I need to watch out for anything at all that is different in me. I often tell my husband I'm starting a newly prescribed medication and to please let me know if he notices anything. I've noticed a gamut of symptoms from starting different medications over time, from feeling tired, to tipsy, to sleeping poorly, to getting a rash.

Here is some information from Mayo Clinic on this migraine medication:

-Erenumab-aooe, subcutaneous route (Aimovig)
https://www.mayoclinic.org/drugs-supplements/erenumab-aooe-subcutaneous-route/description/drg-20443746
Hoping that especially the side effects information will be useful.

Are you still having the episodes? Has your doctor weighed in specifically about whether you are experiencing medication side effects?