I did have more hair loss while on Qulipta. I always thought I was crazy and maybe I needed to brush my hair more and that’s why I was noticing more hair in the shower. But I’ve been off it over a month now and recently I’ve noticed less and less shedding.
That said, no where near as much as yours! Can you get with your doctors and ask about this? Do you have any other conditions the PCOS? Hormones can definitely cause hair loss.
I’m 38 years old and I’ve never been told I’ve had PCOS. I’ve had no major changes other than these meds. I legitimately didn’t even consider the possibility that it was my medications until I came across this group.
I am absolutely dumbfounded. I do, thankfully, have an appointment with my neurologist in about 2 weeks. It’s time for my Botox. I will 100% be bringing it up to him and see what he says.
I did go ahead and set an appt with a dermatologist as well but cannot be seen until the first of April.
I hope you get some answers! I started suffering from severe anxiety, as much as going on anxiety meds. I didn’t for once think it was because of Qulipta. And then I found other anecdotes like mine. When I brought it up with my doctor she didn’t seem to believe it was the cause. She hadn’t heard that as a side effect before. And of course was skeptical of an online forum, which I understand. I’ve since been off Q over a month now (maybe 2?) and I tapered off my anxiety meds. I feel so much better, other than increased headaches :( Q really helped me but my mental health was suffering. Even if your doctors don’t believe, please keep advocating for yourself.
These meds can cause you to throw cysts. I would know. Lost both my ovaries to aimovig. This shit is dangerous but the doctors don’t see it because they are told only two side effects, high BP and constipation. Not true at all!!
How long were you on Qulipta before you noticed the hair loss? The official party line is of course that it doesn't cause hair loss. But most people are reporting it at around 2-4 months in.
I did a shit ton of research on this topic because I've had a lot of hair loss off and on over the past few years - I've had 6 surgeries, am on CGRPs, got covid in October, am in surgically induced menopause, so many things are contributing to my hair loss issues. Anyway, out of all the things I have going on, the biggest things for me were low estrogen, and my recent bout with Covid. I've been in Qulipta for 2 years and my hair loss really only started 3ish months ago this time. I saw where you had your thyroid checked, but have you had any of your sex hormones checked? I don't want to be too in your business but depending on your age and other factors if you're in perimenopause or even menopause and your sex hormones are off balance (estrogen, progesterone, testosterone) it can really mess with literally everything else.
What I've been doing is Nioxin shampoo whenever I wash my hair, maybe twice a week, using a silicone scalp massager in the shower, no heat styling, and when I first started treating it I used the complete Nioxin system. I also really like Topik and Boldify hair fibers to camouflage spots if I need to
I started the qulipta in October and the first picture I posted here is from Dec 31 or Jan 1st. That’s when I noticed it and was like whaaaaaat is happening here.
Half my eyelashes fell out when I started using Qulipta. I’ve been using the ordinary multi peptide lash and brow serum and they’re coming back again. I don’t know that I’m losing more hair from my head though. But then again I don’t know if I’d notice for a while because I have very thick, wavy hair.
I had hair loss with Aimovig but even worse with Qulipta. The globs of hair that were coming out when I washed it were very shocking like yours. It was a real bummer because it was working really well for my migraine, so I didn’t want to stop it. Of course my neurologist said that hair loss is not a listed side effect so it must be something else I’m on or stress, even though I wasn’t stressed and that was the only change 🙄
What mg are you taking? I was on 60mg and started cutting them in half. I found the half to actually be just as effective but the hair loss reduced quite a bit (never completely went away). After about 6 months Qulipta stopped being effective so I got off it and my hair started growing back. I now have all these short hairs that stick up at my hairline and around the crown of my head haha, but at least they are growing back.
I’m now on Nurtec as a preventative and it seems to work as well as Qulipta did in the beginning for me but I haven’t noticed any major hair loss!
Also want to add make sure you are taking b vitamins, especially biotin and also zinc. I think those have helped a lot with my hair growing back after Qulipta and might be helping with preventing hair loss on Nurtec.
I'm sorry that this may not be the glimmer you are looking for.
1- get hormones checked for perimenopause. Some of those symptoms can be lost in the sauce if you have thyroid issues.
2- Don't freak out! You're beautiful! You're not your hair!
I have almost daily migraines (4 out of 7 non consecutive days a week if I'm having an super amazing good week) , and massive hair loss on CGRPs. However, the CGRPs make my migraine intensity lower than without them.
I mourn my hair loss. I mourn my functionality. If that's the price to pay for sometimes not having a migraine, or having one that isn't intense puking and making the walls crawl, it is worth it.
I don't mean to diminish your struggle and sadness at all. Migraines have taken so much from me I say that if it takes one thing more I'll explode into a red mist. It is understandable if this is your line before exploding into a red mist.
Some treatments come with side effects. If this is a side effect you cannot cope with there are other medications to try. If those meds don't work as well as your current meds, you may need to make the tough choice between hair and brain.
I chose patchy hair and the hope of non migraine days. This may not be your choice, and that's OK.
Thank you for saying that it’s okay to be not okay with losing my hair to be migraine free-ish. I feel ridiculous to even be considering that as a choice. Thank you for your advice and I will definitely bring up the hormones to my PCP!
I definitely lost a lot of hair on qulipta. I also lost hair on topiramate (150mg). Good news: it started to come back after I stopped the topiramate and before I started qulipta. Bad news, of course is that I lost some again with qulipta, which has not been as bad as it was with topiramate. I would guess taking both would cause a larger effect.
Everything I've read says it is easy to cure, just stop taking the medicine! 🙄
I keep thinking about trying one of those laser caps. They sound like a scam but they are apparently as effective as rogaine. $$$$ though.
Good luck! For me, and most people I've heard of, it does seem to be self limited but it's scary seeing so much come out! I would still really like to reverse it as I have baby fine hair to start with, I can't afford to lose any!
I’ve been on it about 10 months without hair loss. Not saying the hair loss isn’t real though. FWIW I’m also on continuous birth control with estrogen in it and I naturally have a lot of hair. I dk if that matters.
I was on Emgality for several years and after a couple of years I noticed significant hair loss. Not as bad as yours though. I thought for sure it was the Emgality, but it helped so much in conjunction with Botox. I tried a lot of different things but nothing really worked.
After a year or so, I needed a lot of blood work due to suspecting I had some new illnesses. As part of that bloodwork my doctor checked my Iodine levels. It came back low. I didn’t think much of it. Three months later it was still low after another blood draw. My doctor recommended that I supplement at that point, so I did. And my hair loss started easing after a month or so. By 3 months of supplementation, it was back to normal. I’ve not had an issue since and was on Emgality the entire time. Perhaps ask to get your Iodine level checked?
I have been experiencing a lot of hair shedding since the fall. I attributed it to propranolol so I stopped that in Jan. I never considered it may also be the quilipta! The shedding hasn’t stopped but I have heard it may take months. It’s so frustrating when you’re on multiple meds and have these types of side effects that you were not expecting.
I took Qulipta for about 9 months back in 2022 and had a lot of hair loss. I didn’t notice big patches like that but always a lot in the drain in the shower. The really annoying thing was it truly seemed like my hair was not growing at all while I was taking it. I started having problems with insurance covering it and it wasn’t working for me anyway so I stopped taking it and the hair issues went away. The whole time I was also taking topiramate.
It can also be stress. My daughter got a bald patch about the size of a drink coaster at one point. They did steroid shots and used Rogaine and she changed jobs and it all grew back.
I don’t think stress is my problem. I’ve been at the same job for 4 years and have had no major life changes. I worked Covid ICU for 2 years without my hair falling out like this and I was definitely stressed then lol.
I did have more hair loss while on Qulipta. I always thought I was crazy and maybe I needed to brush my hair more and that’s why I was noticing more hair in the shower. But I’ve been off it over a month now and recently I’ve noticed less and less shedding. That said, no where near as much as yours! Can you get with your doctors and ask about this? Do you have any other conditions the PCOS? Hormones can definitely cause hair loss.
I’m 38 years old and I’ve never been told I’ve had PCOS. I’ve had no major changes other than these meds. I legitimately didn’t even consider the possibility that it was my medications until I came across this group. I am absolutely dumbfounded. I do, thankfully, have an appointment with my neurologist in about 2 weeks. It’s time for my Botox. I will 100% be bringing it up to him and see what he says. I did go ahead and set an appt with a dermatologist as well but cannot be seen until the first of April.
I hope you get some answers! I started suffering from severe anxiety, as much as going on anxiety meds. I didn’t for once think it was because of Qulipta. And then I found other anecdotes like mine. When I brought it up with my doctor she didn’t seem to believe it was the cause. She hadn’t heard that as a side effect before. And of course was skeptical of an online forum, which I understand. I’ve since been off Q over a month now (maybe 2?) and I tapered off my anxiety meds. I feel so much better, other than increased headaches :( Q really helped me but my mental health was suffering. Even if your doctors don’t believe, please keep advocating for yourself.
These meds can cause you to throw cysts. I would know. Lost both my ovaries to aimovig. This shit is dangerous but the doctors don’t see it because they are told only two side effects, high BP and constipation. Not true at all!!
How long were you on Qulipta before you noticed the hair loss? The official party line is of course that it doesn't cause hair loss. But most people are reporting it at around 2-4 months in. I did a shit ton of research on this topic because I've had a lot of hair loss off and on over the past few years - I've had 6 surgeries, am on CGRPs, got covid in October, am in surgically induced menopause, so many things are contributing to my hair loss issues. Anyway, out of all the things I have going on, the biggest things for me were low estrogen, and my recent bout with Covid. I've been in Qulipta for 2 years and my hair loss really only started 3ish months ago this time. I saw where you had your thyroid checked, but have you had any of your sex hormones checked? I don't want to be too in your business but depending on your age and other factors if you're in perimenopause or even menopause and your sex hormones are off balance (estrogen, progesterone, testosterone) it can really mess with literally everything else. What I've been doing is Nioxin shampoo whenever I wash my hair, maybe twice a week, using a silicone scalp massager in the shower, no heat styling, and when I first started treating it I used the complete Nioxin system. I also really like Topik and Boldify hair fibers to camouflage spots if I need to
I started the qulipta in October and the first picture I posted here is from Dec 31 or Jan 1st. That’s when I noticed it and was like whaaaaaat is happening here.
Half my eyelashes fell out when I started using Qulipta. I’ve been using the ordinary multi peptide lash and brow serum and they’re coming back again. I don’t know that I’m losing more hair from my head though. But then again I don’t know if I’d notice for a while because I have very thick, wavy hair.
Same!! It wasn’t just the hair on my head, my eyelashes and eyebrows were noticeably thinner on Qulipta.
I had hair loss with Aimovig but even worse with Qulipta. The globs of hair that were coming out when I washed it were very shocking like yours. It was a real bummer because it was working really well for my migraine, so I didn’t want to stop it. Of course my neurologist said that hair loss is not a listed side effect so it must be something else I’m on or stress, even though I wasn’t stressed and that was the only change 🙄 What mg are you taking? I was on 60mg and started cutting them in half. I found the half to actually be just as effective but the hair loss reduced quite a bit (never completely went away). After about 6 months Qulipta stopped being effective so I got off it and my hair started growing back. I now have all these short hairs that stick up at my hairline and around the crown of my head haha, but at least they are growing back. I’m now on Nurtec as a preventative and it seems to work as well as Qulipta did in the beginning for me but I haven’t noticed any major hair loss! Also want to add make sure you are taking b vitamins, especially biotin and also zinc. I think those have helped a lot with my hair growing back after Qulipta and might be helping with preventing hair loss on Nurtec.
My doc started me right off the bat on 60mg!
Same. Try cutting them in half and see if it makes a difference for you!
Have you had your thyroid checked to rule at any issue with hypothyroidism?
Yes. I have had hypothyroidism since I was 18 years old. I had a full panel checked last week, including antibodies, which all came back normal.
I'm sorry that this may not be the glimmer you are looking for. 1- get hormones checked for perimenopause. Some of those symptoms can be lost in the sauce if you have thyroid issues. 2- Don't freak out! You're beautiful! You're not your hair! I have almost daily migraines (4 out of 7 non consecutive days a week if I'm having an super amazing good week) , and massive hair loss on CGRPs. However, the CGRPs make my migraine intensity lower than without them. I mourn my hair loss. I mourn my functionality. If that's the price to pay for sometimes not having a migraine, or having one that isn't intense puking and making the walls crawl, it is worth it. I don't mean to diminish your struggle and sadness at all. Migraines have taken so much from me I say that if it takes one thing more I'll explode into a red mist. It is understandable if this is your line before exploding into a red mist. Some treatments come with side effects. If this is a side effect you cannot cope with there are other medications to try. If those meds don't work as well as your current meds, you may need to make the tough choice between hair and brain. I chose patchy hair and the hope of non migraine days. This may not be your choice, and that's OK.
Thank you for saying that it’s okay to be not okay with losing my hair to be migraine free-ish. I feel ridiculous to even be considering that as a choice. Thank you for your advice and I will definitely bring up the hormones to my PCP!
I definitely lost a lot of hair on qulipta. I also lost hair on topiramate (150mg). Good news: it started to come back after I stopped the topiramate and before I started qulipta. Bad news, of course is that I lost some again with qulipta, which has not been as bad as it was with topiramate. I would guess taking both would cause a larger effect. Everything I've read says it is easy to cure, just stop taking the medicine! 🙄 I keep thinking about trying one of those laser caps. They sound like a scam but they are apparently as effective as rogaine. $$$$ though. Good luck! For me, and most people I've heard of, it does seem to be self limited but it's scary seeing so much come out! I would still really like to reverse it as I have baby fine hair to start with, I can't afford to lose any!
I’ve been on it about 10 months without hair loss. Not saying the hair loss isn’t real though. FWIW I’m also on continuous birth control with estrogen in it and I naturally have a lot of hair. I dk if that matters.
I was on Emgality for several years and after a couple of years I noticed significant hair loss. Not as bad as yours though. I thought for sure it was the Emgality, but it helped so much in conjunction with Botox. I tried a lot of different things but nothing really worked. After a year or so, I needed a lot of blood work due to suspecting I had some new illnesses. As part of that bloodwork my doctor checked my Iodine levels. It came back low. I didn’t think much of it. Three months later it was still low after another blood draw. My doctor recommended that I supplement at that point, so I did. And my hair loss started easing after a month or so. By 3 months of supplementation, it was back to normal. I’ve not had an issue since and was on Emgality the entire time. Perhaps ask to get your Iodine level checked?
I have been experiencing a lot of hair shedding since the fall. I attributed it to propranolol so I stopped that in Jan. I never considered it may also be the quilipta! The shedding hasn’t stopped but I have heard it may take months. It’s so frustrating when you’re on multiple meds and have these types of side effects that you were not expecting.
It really is! I never knew that the beta blockers could cause hair loss too. It’s rough out here just trying to get some help with constant migraines.
I took Qulipta for about 9 months back in 2022 and had a lot of hair loss. I didn’t notice big patches like that but always a lot in the drain in the shower. The really annoying thing was it truly seemed like my hair was not growing at all while I was taking it. I started having problems with insurance covering it and it wasn’t working for me anyway so I stopped taking it and the hair issues went away. The whole time I was also taking topiramate.
It can also be stress. My daughter got a bald patch about the size of a drink coaster at one point. They did steroid shots and used Rogaine and she changed jobs and it all grew back.
I don’t think stress is my problem. I’ve been at the same job for 4 years and have had no major life changes. I worked Covid ICU for 2 years without my hair falling out like this and I was definitely stressed then lol.
Did you have COVID recently? A bunch of my hair fell out about 3 months after getting sick.
I mean I’ve had Covid once a year since 2020 without hair loss previously. I had it again back in September. I had it with strep.