Ajovy

Posted by giulia76 @giulia76, Feb 7, 2023

Good morning,

Is anyone taking Ajovy to improve symptoms of small fiber neuropathy or neuropathy in general? I took my first shot two weeks ago. So far so good and I am hoping it will help. Can anyone share their experience?

Thank you,

Giulia

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Hello @giulia76. So glad to hear that you're feeling well the first two weeks post shot!

In another discussion on the topic of migraines, members @taterjoy and @april354 have mentioned taking Ajovy so may be able to come in and share their experience to see if it is helpful at all to you.

How long are you hoping the shot will last to reduce or eliminate symptoms?

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Hi giulia76 (@giulia76)! Good to hear you're feeling better on Ajovy and hopefully it will be well tolerated and effective ongoing. Amanda is correct, I have self-injected Ajovy every 28 days for about six months, for preventative treatment of classic migraines with aura. I was previously prescribed Emgality by my Neurologist at Mayo Clinic but I was paying out of pocket. When my insurer finally added a CGRP to the forumulary, they provide ONLY Ajovy, so I switched since it is much more affordable. It is very affective in preventing daily migraines to about 4-6 per month (requiring Rescue meds such as Frovatriptan and occassionally, acute injections of Ketorolac). I do not feel it is as effect\ive for my case as Emgality was, as my neurological symptoms were almost nil with Emgality. With Ajovy, I experience more ocular flashing scotoma, afterimages, dry eye syndrome, numbness on lower face, and more severe migraine symptoms when I do have a headache (sometimes need two Frovastain two hours apart instead of one). Both CGRPs given in my abdomen cause acute injection-site reaction (intense itching, redding, and swelling lasting a few days). Not enough to give up on it, as it is very effective overall. I hope you continue to do well on Ajovy!

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Profile picture for taterjoy @taterjoy

Hi giulia76 (@giulia76)! Good to hear you're feeling better on Ajovy and hopefully it will be well tolerated and effective ongoing. Amanda is correct, I have self-injected Ajovy every 28 days for about six months, for preventative treatment of classic migraines with aura. I was previously prescribed Emgality by my Neurologist at Mayo Clinic but I was paying out of pocket. When my insurer finally added a CGRP to the forumulary, they provide ONLY Ajovy, so I switched since it is much more affordable. It is very affective in preventing daily migraines to about 4-6 per month (requiring Rescue meds such as Frovatriptan and occassionally, acute injections of Ketorolac). I do not feel it is as effect\ive for my case as Emgality was, as my neurological symptoms were almost nil with Emgality. With Ajovy, I experience more ocular flashing scotoma, afterimages, dry eye syndrome, numbness on lower face, and more severe migraine symptoms when I do have a headache (sometimes need two Frovastain two hours apart instead of one). Both CGRPs given in my abdomen cause acute injection-site reaction (intense itching, redding, and swelling lasting a few days). Not enough to give up on it, as it is very effective overall. I hope you continue to do well on Ajovy!

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Thank you for sharing your experience with me. I really appreciate it. I will keep using it (one shot every 28 days) and hopefully, I won't start having side effects. I read about some very bad experiences and I was a bit concerned, although still willing to try. I am desperate as I feel I am losing control of my body bit by bit. I don't think Ajovy will eliminate symptoms. Perhaps it will help with the migraines I have been experiencing more frequently recently but, just like Pregabalin first and Cymbalta after, it will help to manage the myriad of symptoms I have. I am still researching a cause for my small fiber neuropathy. I am seeing a rheumatologist (the third one) in March and going to a neuromuscular specialist in St. Louis in October. Fingers crossed. Thank you again.

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Loud noise like drilling and leaf blowers give me a bad earache and migraines. After using the Ajovy injection for two months, my sensitivity to loud sounds is much worse. For example, tree trimmers (from 3 or 4 blocks away) give me such severe earaches and migraines-that I must leave home. Unfortunately, after leaving home, I can still hear the harsh drilling for over half an hour.
I understood that the Ajovy injection would cut down on my sound sensitivity--not magnify it! But it's reducing my migraines.
Has anyone experenced worse noise sensitivity from Ajovy?

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Profile picture for marie11025 @marie11025

Loud noise like drilling and leaf blowers give me a bad earache and migraines. After using the Ajovy injection for two months, my sensitivity to loud sounds is much worse. For example, tree trimmers (from 3 or 4 blocks away) give me such severe earaches and migraines-that I must leave home. Unfortunately, after leaving home, I can still hear the harsh drilling for over half an hour.
I understood that the Ajovy injection would cut down on my sound sensitivity--not magnify it! But it's reducing my migraines.
Has anyone experenced worse noise sensitivity from Ajovy?

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I'm new here. I forgot to add my name, which is Marie517. My question was did anyone using Ajovy injection experience magnified sounds afterwards.

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Profile picture for marie11025 @marie11025

Loud noise like drilling and leaf blowers give me a bad earache and migraines. After using the Ajovy injection for two months, my sensitivity to loud sounds is much worse. For example, tree trimmers (from 3 or 4 blocks away) give me such severe earaches and migraines-that I must leave home. Unfortunately, after leaving home, I can still hear the harsh drilling for over half an hour.
I understood that the Ajovy injection would cut down on my sound sensitivity--not magnify it! But it's reducing my migraines.
Has anyone experenced worse noise sensitivity from Ajovy?

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Hi, it's Marie again. If anyone can help, I'd sure appreciate it. In Feb. 2026, the landlord next was having fixed the foundation of her apartment. Thus, next door to me, they did drilling, sawing & used compressors. 8 hours daily for 3 weeks. The noise was unbearable, giving me bad earaches---the worst migraines of my life. Since then, chainsaws, drilling are severely painful. For 2 months, I used Ajovy injection, which reduced the migraines, but is magnifying all sounds: traffic nearby & tree trimmers 3 or 4 blocks away. It's crazy. I'm trying to block noise constantly. Can anyone relate to this? I'd sure appreciate your feedback.

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Profile picture for marie11025 @marie11025

Loud noise like drilling and leaf blowers give me a bad earache and migraines. After using the Ajovy injection for two months, my sensitivity to loud sounds is much worse. For example, tree trimmers (from 3 or 4 blocks away) give me such severe earaches and migraines-that I must leave home. Unfortunately, after leaving home, I can still hear the harsh drilling for over half an hour.
I understood that the Ajovy injection would cut down on my sound sensitivity--not magnify it! But it's reducing my migraines.
Has anyone experenced worse noise sensitivity from Ajovy?

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I use Aimovig, but they are very similar, and have none of these issues. Have you talked to your doctor about this?

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Profile picture for mbixler @mbixler

I use Aimovig, but they are very similar, and have none of these issues. Have you talked to your doctor about this?

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Thanks for responding. It's good that you don't have these problems. Today I sent the doctor my symptoms. Hopefully, he can explain what's happening. Take care.

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Profile picture for marie11025 @marie11025

Loud noise like drilling and leaf blowers give me a bad earache and migraines. After using the Ajovy injection for two months, my sensitivity to loud sounds is much worse. For example, tree trimmers (from 3 or 4 blocks away) give me such severe earaches and migraines-that I must leave home. Unfortunately, after leaving home, I can still hear the harsh drilling for over half an hour.
I understood that the Ajovy injection would cut down on my sound sensitivity--not magnify it! But it's reducing my migraines.
Has anyone experenced worse noise sensitivity from Ajovy?

Jump to this post

That is rather bizarre. I have not previously heard about this adverse reaction to any of the CGRP medications. But anything is possible in medicine. I have tried all the CGRP medications including the injections and oral meds and had 3 to 4 years of relief with Emgality. But it stopped working after a few years. Next plan is to try the vypeti infusions. I am just waiting for the prior authorization.

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Profile picture for marie11025 @marie11025

Loud noise like drilling and leaf blowers give me a bad earache and migraines. After using the Ajovy injection for two months, my sensitivity to loud sounds is much worse. For example, tree trimmers (from 3 or 4 blocks away) give me such severe earaches and migraines-that I must leave home. Unfortunately, after leaving home, I can still hear the harsh drilling for over half an hour.
I understood that the Ajovy injection would cut down on my sound sensitivity--not magnify it! But it's reducing my migraines.
Has anyone experenced worse noise sensitivity from Ajovy?

Jump to this post

Hi, @marie11025 - just wanted you to know I moved your post over to this larger discussion on fremanezumab-vfrm (Ajovy) so you could meet others talking about it:

- Ajovy https://connect.mayoclinic.org/discussion/ajovy/

You also may be interested in this Mayo Clinic online information about this drug:

- Fremanezumab-vfrm (subcutaneous route) https://www.mayoclinic.org/drugs-supplements/fremanezumab-vfrm-subcutaneous-route/description/drg-20443994

In the tab on side effects, it does mention pounding in the ears, which has some similarities yet is a little different than what you described.

Glad you connected with @mbixler and @coho222. Fellow members in this discussion @giulia76 @taterjoy may also have some ideas on the medication and sensitivity to loud sounds. I'm also tagging other members who have talked about taking fremanezumab-vfrm (Ajovy) in other discussions to see if they have experienced or heard of others experiencing worsened noise sensitivity with this medication. Please meet @marybrak @april354 @benchi300 @jrsjc @zpagan.

Has your prescribing doctor gotten back to you about the fremanezumab-vfrm (Ajovy) and this noise sensitivity, marie11025? If so, what does the doctor suggest doing about it?

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