Fremanezumab (Ajovy) for migraines

[Lougle]

Hi, I've just been prescribed Ajovy and I'm waiting to collect it from the pharmacy. I've read some reviews and there's a real mixed bag of experiences. Has anyone here been on it?

Hello! Yes, I'm about to take my 3rd jab this afternoon. It's bloody life changing. I've gone from up to 27 days a month of migraine to 3-5 max. And they're milder.

Botox initially helped but over 2yrs became less effective and I was at the end of my rope, literally wondering how I could continue living like this so begged for Ajovy.

And fuck me, it's incredible.

The first month, zero side effects. Instant effect for me.
The second month, I had a slightly itchy and raised red mark the size of my palm at the injection site that didn't go down for weeks and is still slightly visible as marbling on my leg, but frankly I'll take it.

I'll see how number 3 goes shortly!

Oh that's encouraging! I've got a bit scared after reading all the reviews on drugs.com. Lots of accounts of dizziness, hair loss and thinning, weight gain, etc.

Frankly, most people I've spoken to have over exaggerated their side effects, and when you press them it all comes clear....

There's a good Fb group for UK patients if you use Fb: www.facebook.com/groups/2110037405926055/?ref=share

There's also a separate side effects group, but frankly I left it after an afternoon of reading - most of them seemed to have an axe to grind, lots of scaremongering and I think many were being let down by their neurologists so we're determined that nothing would help them and that this jab was the work of the devil.... Plus I suspect several people were fakes (not on the drug at all) as too much just didn't add up to me 🤷🏼‍♀️ 😂

I’m hoping to be prescribed Ajovy by my neurologist. I’m 59 and have had migraines since forever and have, according to my GP, tried everything, some treatments twice. Unfortunately the neurologist wants me to give Botox another go having tried it 9 years ago. I’m not hopeful tbh but it’s a hoop I need to jump through before hopefully being prescribed Ajovy. I can’t wait as migraines absolutely ruin my life. I have them pretty much daily, usually waking in early hours with one so sleep is rubbish too.

soddingweddings are you able to give me some background to your migraines pls? Just need something to give me hope - have to wait for course of three Botox treatments before referred back and each Botox is 10 weeks apart!
How quickly do the injections take effect?
Thank you 🙏

Botox should be 12wks apart?

Botox, doesn't kick in fully for two weeks. I would get improvements from about day 10, and it would wear off completely by about week 9, meaning that I lost a good 5wks in 12 to the Botox having no effect.

At it's best, Botox too my migraines down to 10-15 a month, and definitely reduced the severity of attacks, I only had a hemiplegic attack once in two years instead of monthly. I would occasionally get two weeks off zero migraines or headaches.

The problem with it, I think, is it's down to the skill of the person injecting you. Sometimes it was massively effective, other times I might as well not have bothered for three months.

Ajovy is a similar cost to the NHS, but much lower burden as no need to see me face to face to put 42 injections in me (I had extras on my right and my neck as that's where most of the pain was) as I can do it myself on the sofa.

Today's jab - small dot of liquid on the skin but so far no lump or reaction at the site, yay!

I have a 25+yr history of migraine, I've dipped in and out of chronic all my life, but this has been horrifically for about 6yrs. I've tried propanalol, amitryptiline, pizotifen, nortriptyline and topiramate (topiramate side effects nearly cost me my job and my marriage). Then Botox for two years.

I take all the supplements recommended by the Migraine Trust (my neurologist helped write the guidance), but no real effect for me. I also have every bit of kit known to man - Cefaly, pranamats, ice packs, heating pads, Migracap, Migralens sunglasses (these are AMAZING)....

soddingweddings thank you for sharing that.

Yes, I’ve had Botox before but this time my doctor has recommended a 10 week interval. Tbh I’m happy with that. I don’t feel it’ll work (didn’t before) and I just really want to use one of the CGRP injections so the quicker I can get through the Botox the better. Like you I’ve tried all the pills, had reflexology, acupuncture, taken supplements, restrictive diet, withdrawn from all medicines on neuro advice (horrific), and been hospitalised with migraines. They make life a misery. Dread going to bed at night as I always wake with one during the night.

Similar treatment history to you @SoddingWeddings
-Propranolol gave me vivid dreams/hallucinations
-Metoprolol and sandomigran made me pass out randomly
-Gabapentin did nothing
-Topiramate made me lose words, stumble and gave me pins and needles
-Amitriptyline made me have awful waking dreams and I nearly attacked my DH, thinking he was a stranger in my room.
-I'm on Nortriptyline but not on full dose because it worsens my tachycardia
-I've had some success with candesartan but still get 15+ migraines per month plus further headache days
-Botox has reduced the severity but not the frequency.

• Cefaly helps when it's on, but as soon as it turns off the migraine pain returns full force.

I haven't tried Migralens - just so expensive that I'd have cried if it was a gimmick.
I nearly tried a migraine cap but they use lavender, which triggers me massively.

One of the conditions for me trying Ajovy is that I don't have further Botox, because they are both expensive treatments and they need to justify the use of them by showing success in treatment. If I have Botox at the same time, they won't know which one works. Lucky for me, I had a dose of Botox 4 days before seeing the Consultant.

My migraine cap is just mini ice packs inside a rugby type cap, it lives in the freezer. No scent.

Migralens aren't that pricy compared with, say, Cefaly. I use them instead of sunglasses. I also got them from the RNIB, to support them: shop.rnib.org.uk/migralens-tortoiseshell-ladies-eyeshields-2738 Honestly the best thing I've bought after a pile of ice packs!

Ahh, I looked at prescription ones because I wear glasses all the time. They were over £300.

Ah yes, I wear both contact lenses and Rx glasses, so use these with contacts. I have Rx sunglasses but not in Migralens. You can buy overspecs. Honestly, it's like a cold compress on your face during a migraine, I can even go outdoors in blazing sunlight with a migraine as long as I have these on. Incredible.

I took my first injection today. I hope it's a good result!

Strangely comforting to hear how terrible other people's migraines are. I find it upsetting to meet people who think they understand when they get one migraine a year whereas like you all, I have had near daily migraine for the last 6 years on a background of 40 years of them. Tried betablockers (great) also candersartan, topirimate, duloxetin, loads of supplementd, melatonin, magnesoum etc, botox. Nothing apart from betablockers works for me and they are now no longer a good preventative. Had DHE infusion which works well but then they come back. Daily sumatriptan, waking in the night with a headache, bailing out of all social engagements, barely functioning at work.......it is really crap!! Keep hoping they might get better when I retire ( at least 8 years to go). Only time they are Ok is if I am on holiday. Then I go down to one a day.

Anyway good to know the monoclonals are working, I am on the waiting list. Was nervous about side effects but feel I have no choice..

Great stuff @Lougle!

I've actually had a rubbishy skin reaction to the jab on Monday - I've reported it to Alcura, but I think this means they'll take me off Ajovy 😭😭😭😭 Praying they'll just switch me to another one (Emgality etc).

Photo is me last night....its less aggressive now, but still there.

Oh that does look bad! I've got a little bit of hardness at the injection site and I can see the area is ever so slightly raised, but nothing that can be seen on a photo and no redness as yet.

I keep seeing people refer to Alcura - is that an online pharmacy? I had to go to the hospital pharmacy to collect mine.

Hi , I’m just starting on my journey with this med , I’m a chronic daily headache person who is losing to the pain . Can I ask how your getting in now ? Thank you in advance x

Hi @Louandtheboy I'm now on Aimovig instead of Ajovy. They forced me to take a 3 month break after a year on the injections, and it was never as effective again so they switched the meds.

I was forced into more breaks which have all failed but this time neurology cocked up and dropped me off their lists meaning a 6 month break... That was absolutely horrific and I was back up to daily migraine by the time they prescribed for me again. I'm back down to about 8-10 again, but it's been a shit 8 months.

The NHS Trusts seem to think these injections are a cure rather than a treatment and are desperate to get us all off them because of the cost.... Nothing I've said or done has made any difference to avoiding the breaks!

They are still life changing drugs though.