By Joanna Bodner Keymaster
By Joanna Bodner Keymaster
I started Ajovy twelve days ago and have had only one definite side effect, which probably falls under the “injection site reactions” they list. There was a little swelling/warmth around the injection sites (I did the three-month version which means you get three shots). And on the leg where I got two of the three shots, if I stand for more than twenty minutes or so, a big patch of the leg (around the injection sites, which were about eight inches apart) goes totally numb until I move around/walk/sit. I would recommend spreading the shots out more if you are getting the triple shot since I had no problems with the leg that only got one shot. (I guess it’s possible that the needle hit a nerve or something… who knows.)
I also had one thing that might be a side effect but I’m not sure… a few days after the injection I got a pretty decent sunburn, which surprised me since it’s October and I live in NYC. I was outdoors for less than two hours all day and I wasn’t consistently in the sun. So I think there’s a possibility that the medicine is having an effect of sun sensitivity. Not 100% sure it was the meds since it was a sunny day and I am very fair. Something to keep an eye on, anyway.
Certainly a lot less side effects than other meds I’ve had – I tend to be someone who gets all the side effects. I had a list of 15 side effects from topamax before I gave up on it…
I took my first injection Friday. I have been winded, sleeping non stop and had chest pain, severe migraine, dizziness upon standing and sitting upright. Went to urgent care, EKG showing PVC’s and bradycardia. I am a former heart patient – had an ablation 30 years ago, never have had bradycardia.
I hope this doesn’t last 30 days. I am to follow up with my neurologist and see a cardiologist.
I also had slight itching at the injection sight for about an hour. Minor.
Similar side effect after 2 injections of ajovy. I thought I was having a heart attack. Chest pain, extreme fatigue, shortness of breath. Cardiologist says heart is fine. Neurologist says ajovy isn’t causing symptoms. I went from active at the gym to can’t breath going up starts.
Haven’t taken 3rd shot. Has been a month since last one. Not back to normal but better than I was
I am entering week 4 following the first injection. My Dr. said there would not be any side effects and per literature, only minor. Immediately I began having severe constipation with cramping that lasted up to nearly a week, followed by two to three days of diarrhea. I’m on a soup diet! I’m on round three of this now! Prior to the injection I did not experience these issues. Yes, the migraines have decreased slightly but honestly, if the Ajovy is what’s causing my stomach issues it’s not worth it; it’s that bad. I’m due for a follow-up with my Dr…until then, anyone else??
I’ve only read your post and thought the side effect I was having was constipation but am realizing that I have a swollen stomach too, I put this down to the constipation because I am only getting a handle on it now it has taken while to find something herbal to work. I didn’t want take more tablets as I am already on enough so I take two peppermint oil capsules from boots and find them very good.. Only now am I realizing that I still have a swollen stomach,look about six months pregnant and feel so uncomfortable and bloated and this is after only one month ,I am due my second lot in four days as I take two injections. I am now wondering is there a connection as I have not put on any weight??
Watch out for possible side effects no one will mention. I had Hair loss (by the handfuls) and severe debilitating constipation, despite taking a pharmacy of stool softeners/ laxatives. Six months later everything known to man has been ruled out (including thyroid/endocrine issues) and one month after discontinuing my Ajovy injection after reading about these exact side effects, things started slowly getting back to normal (except for my hair of course, that will take years but thankfully I bought a halo hairpiece. It has stopped falling out in clumps).
These migraine shots are calcitonin-gene-related peptide inhibitors, as research found they are a migraine trigger, and I will be the first to admit the injection worked but not at the price I was paying for my health. Look at what these peptides do.
The CGRP’s are secreted in the thyroid and are not only responsible for the health of your hair, nails, skin, bowel motility, bowel mucosa but essential for cardiac health, immune system, wound healing, bone health etc. They are actually researching the use of these peptides for hair growth because they have found them deficient in most people who have alopecia (hair loss)… so if you inhibit them….wouldn’t you think the hair would fall out? Yes it’s a vain idea to choose a migraine over hair loss but add in the constipation so severe it had me in the ER getting a CT scan…. I’ll just continue the search for migraine relief. I’ve spent thousands trying to diagnose my mystery illness but realize this is a risk we take by using new drugs. Please report any unusual side effects of ANY drug to the drug manufacturer and the FDA. It’s our responsibility to aid in research, especially for this debilitating illness of migraines.
I did my second Ajovy shot 4 days ago and right now the injection site has a massive angry, swollen rash that’s grown to 3 inches in diameter. I can’t stand to have anything touching it, so wearing jeans is out of the question! I had a similar reaction to the first shot but it was not quite this bad. I’ve been searching the internet for mention of similar reactions from other users but all I find are the generic “Side Effects” list.
Right now I’m just so frustrated and upset. I had planned to use the drug for 3 months before determining if it was beneficial, but it seems my body is loudly against that idea.
I’m seriously at a loss as to what to do next and my Neurologist is only interested in handing out drugs, not actually listening to my symptoms or answering my questions.
I have had 2 monthly injections and had to stop. I was prescribed Aimovig for chronic neck pain. Hasn’t helped at all and now has caused severe constipation and urine retention.
I’ve read it has a half life of many months 😞
Thank you for posting. I’ve had painful urine retention and constipation and have been racking my brain to figure out what’s causing it. Now I know it could be related to my shot on Jan 2nd.
The injection site rash that I developed grew to 7 inches in diameter and was really painful. I won’t be continuing with the drug.
Five days after receiving my first Ajovy injection at my neurologist’s office I experienced a blistery rash on my face. 6 or 7 blister-like bumps appeared surrounded by redness. By day 6 I had a rash covering my entire body and intense itching.
Benadryl and hydroxizine reduced the itching and the body rash but the bumps on my face remain. They seem to fade after a few days and even crust over a little (similar to shingles but not exactly) but then the skin on my cheek turns red and the bumps become inflamed again. I’ve had shingles before which is painful; this rash is not.
As a person with environmental and medical allergies I’m very in tune with how my body reacts and I’m careful not to change more than one medication or part of my diet at a time. There haven’t been any other additional medications or changes in diet so I’m inclined to attribute this ongoing but waxing/waning reaction to Ajovy.
I skipped the next dose of Ajovy, hoping once the bumps and rash/redness subsided I would try another dose and watch for the same reaction. It’s been 8 weeks since my first dose, the initial bumps on my face are still present and I seem to be going into another cycle of itching and inflammation. Although I don’t have insurance, I will reluctantly make an appointment to rule out any other causes for these symptoms.
My friend had the same rash from Aimovig!!
Thank you all for posting! After reporting the severe constipation to my Dr. he was really upset. He said I was the first case with that particular side effect in his office but had recently heard of it amongst colleagues. We were both saddened that this isn’t a medication for me; I had such high hopes. BTW…took nearly 8 weeks for the medication to leave my system. Good luck to everyone!
I switched to Ajovy in late Dec from Amovig because of the constipation side effects with Amovig. Within 30 minutes of the injection, the injection site swelled and became a big red circle and painful. I felt lightheaded, nauseous, and face flushed red with heat. I put ice packs on the injection site and my head and neck to cool down and help the nausea. And to an anti-nausea medication. I felt symptomatic for about 4 hours.
I had a point of comparison because I’d taken Amovig for 3 months previously and had no problems at the injection site, and felt no other symptoms. Also, for me, this drug didn’t work as well that month in reducing as many # of migraines.
But overall, this class of drug has been successful for me. I’m back on Amovig and managing the constipation more diligently (sorry, tmi). This drug has been a game changer for me in reducing # of migraines. I was 15+ p/mo down to 2-3.
I’m due to start amovig and to be honest totally scared from what I’m reading.. I live in Ireland and very little is known over here. Currently there are two hospitals running the new trials and the one I go to is a two hour drive and has just started. It is not the main one. Currently I have no quality of life and have tried everything else and at first was eager to try but the only place I can find anything out about this injection is on American or other country forums or this site I have just found out about. I would really appreciate any advice. I am due to start soon after some thorough blood work up and other tests etc. At the moment I am currently between 20-28 days + with migraine and can no longer work
Wishing you the best of luck! You deserve to have relief and I really hope this brings some.
By Sandy S
Hi, Can you get it on the NHS in Ireland as in GB the main place Nice have turned down the funding apparently not enough evidence has been given from trials and they say Botox has got the evidence so they fund that . Also Botox is a lot cheaper for them .I hope you do get to try it and I will keep my fingers crossed for you. Please let us know how you do get on .
I am due to start my second set of injections. I was given 140 mg so that means two. I use my arms because I have read from American forums that there is less injection reactions. So far I have none apart from some slight throbbing but it is bearable, anybody who with severe migraine will say the same. My only complaint is the constipation but I take peppermint oil capsules from boots and they really work. If you are part of the trial in Ireland the injections are free and they accepting up to 1,000 people in both Dublin and in Cork so anybody who has a good g.p and suffers from migraine like me should get on to their migraine doctor through their g.p to see if they are eligible.. Good luck to every body and I will let you know how I am getting on…p.s. My migraines have definitely decreased after just the first month so I would recommend anybody to at least give it a try !!
Hi. I read your post from February and am curious how you are doing. I have daily migraine with various levels of pain. I u derstand everything that comes with chronic levels of pain. I took Amivege for 2 months- ran into insurance problem with payment and switched to Ajovy. I already had gastrointestinal issues and am unsure if Ajovy added or its just my body.
How are you doing on Ajovy. Hopefully you found some support closer to home.
My migraines have definitely decreased in severity and although I wake up with a headache most days it usually goes away once I’m moving around. Don’t get me wrong I still have my bad days but I am no bed bound for days on end and even when I do get a headache I can usually tolerate it or take something so the amount of pain pills I am taking now has gone from perhaps 10 weekly instead of 50 which is good news for liver and kidneys 😀😁 so even though the constipation and swollen is quite bad I for one will sticking with this trial for a while at least.. Also stomach cramps ,bloated feeling and nausea but after so long with those awful migraines I am willing to give anything a good try and my care nurse from the migraine clinic assures it will settle down after the three month mark so will keep going till then. All the best to everybody else and all I can say is give it a try ☺☺
I was on aimovig from June through December 2018 with great success for my headaches. I went from 12 to 15 headache days a month down to about 4. Because of the constipation side effects and terrible insomnia, I switched to Ajovi at the end of January. (I also noticed on aimovig that my curly hair lost all its curl).
This drug has changed my life. No inection side effects, no constipation, and no more insomnia. I have not had to take ANY migraine medication for 5 weeks (although I do still wake up with occasional headaches, they seem to disappear once I get out of bed).
I have only one concern and I can’t be sure it has anything to do with Amovig or Ajovi, and that is that I have had terrible gas for nearly three months. I have not seen anybody mention this as a side effect. If anyone else has experience to this, I’d like to hear about it.
I have only had 1 injection and it was 3 wks ago. I had a hovering pressure-like muted headache for 2 weeks. I’m wondering if this was a side effect or if it was muting my migraines. I had 4 full-blown migraines where I had to take my zomig for relief. In the past, my migraines were 3-4 a week, so trust me, I’m not complaining!!! I just want info and understanding. I’m happy with my result so far and I’ve had no side effects.
I am having tingling in my hands and feet, and it started when I started Aimovig last June, and continued when I switched to ajovy 5 months ago. It happens in my sleep. Anyone else having circulatory problems? I work out a lot and am very healthy, except for the 17 years of chronic daily migraine. The CGRP’s have cut my daily pain, ringing, and other migraine symptoms by at least half. Im still in pain, but it’s less. Does anyone else have chronic daily, abdominal migraine along with head symptoms? The CGRP’s don’t seem to help my stomach. Thanks
Hi. I am on day 11 of my first round of Ajovy. Migraines are slightly improved…only one bad one with a couple others light pain levels and minimal associated symptoms, short lived. I had about 3 days of loose stool days 4-6. Today I had a real dizzy spell. Leaned over to put something on a lower shelf and when I did back up…yikes. I could almost see the walls spinning around me. Vertigo I guess. Minor bruise at the injection sight, probably because I did it myself and am not very skilled, LOL. Good luck everyone.
Hi all, I just found this site and I’m so weirdly happy to talk with others who understand what I’m going through with migraines. I’m so tired of them ruling my life!
I was put on Ajovy in March. The first time around it seemed to work well. The second shot seemed worthless, just as many migraines if not more. This week I did my third shot…I had the worst experience. As soon as I pulled the needle out it felt like all the blood left my body. Broke out in a cold sweat felt as though I would vomit and was so dizzy. I wobbled to the couch to call my husband and he said I was slurring my words and sounded loopy. Another thing I’ve noticed is weight gain…7 pounds in less than 3 months. I’m not one who eats nuts and berries but I watch my diet and do boot camp daily. Just wondering if anyone else has had any of these experiences?
Sorry to ramble but I’d appreciate hearing from others…
You might check out the reviews on the Everyday Health site. That site is not a forum, but there are several reviews that mention similar side effects to those you mentioned except possibly the weight gain. I started Aimovig approximately five months ago, it helped with my migraines, but I had an allergic reaction the first month that I attributed to something else and after a trip to my Nurse Practitioner and a shot and round of steroids, it went away after about a week. The second month, I was on steroids for about three weeks with little relief and after my third doctor visit, a biopsy proved it was medication related. I didn’t have another Aimovig injection. The Emgality caused an allergic reaction as well. I’ve had my second shot of monthly Ajovy a little over a week ago. The first month, I was happy with the results. This time I was sick the day of the injection, both with a headache and then just a general feeling of being unwell afterward (some people have described flu type symptoms), I’ve had one severe migraine with nausea and I’ve had a couple of other less severe ones already since then. This is still an improvement, but worse than last month so far. I have had some of the gastrointestinal issues, but I have mild IBS so I had ignored these issues until reading other posts. I had not had problems in quite some time and they have definitely flared. Lately, I have had more neck and joint pain that I was hoping was not related. I have had three neck fusion surgeries, the last one from which I am still healing.
The side effect I have been wondering about that I have not seen is hair loss!? In the last three to four weeks, I have lost at least 50% of my hair. I mentioned the surgery I had in May that could account for some loss, but past surgeries have not caused this severe reaction. When I first started Topimax many years ago, I had a significant hair loss, but not to this extent. At this point, my migraines have still been enough improved that I don’t want to stop taking Ajovy unless or until I know for sure my recent issues are linked. If anyone has experienced significant hair loss since starting Ajovy, please let me know!
Yes, so much hair loss. It doesn’t stop—after 1 yr of Ajovy I fear I’ll go bald if I don’t quit the meds. More injustice.
Took Ajovy shots for 2 months. Had to go to ER by ambulance day after taking each shot. Head felt like it would explode every time I moved even slightly, room spinning like a top and vomiting every time I tried to raise my head or moved. Multiple shots given in IV needed for any relief. Tied with worst migraine ever. Feel like I was set back 10 years. Migraines have only gradually improved some since then. Still feel like some meds are not working like before or not at all. Set back with chronic migraine condition and treatment also causes a lot more anxiety and depression. This is much harder to handle since very few migraine meds even work for me.
Have been on Ajovy for 8 or 9 months. No side effects unless you count injection area ones like bruising. I have learned that it’s a lot harder to give yourself an injection than you might think.
I am posting chiefly because reading this thread, I figure mostly people WITH bad side effects are posting. And I don’t want someone who is considering this to assume everyone is having them.
That said, it’s not the panacea I had hoped for. The migraines are by no means all gone. They are about 50% better. It’s chiefly reduced the intensity of the daily headache. When my triggers are all there, I will definitely still get a bad one.
And dental work using any kind of novocaine or similar triggers an awful 5 day headache. I don’t recall having that before.
I have had 3 injections of Ajovy so far and no migraines. The only downside for me is the injection site reaction. The first shot I did in the back of my arm and it took 2 weeks for a reaction to start which was an itchy, hot, red rash. Second shot in the stomach and almost instantly the red, hot, itchy spot appeared. For the third shot I went to the other side of my stomach and the spot took a day to fully form and it has kept growing and normally takes 3-4 days of it being swollen, itchy, red, and hot to the touch before it will start to fade. It takes about the entire month for the mark to go away. I’ve decided that the trade off of 3-4 days of itch is better than the migraines I was having.
My doctor said she hasn’t had anyone else with this reaction. I was glad to find this sight and hear it’s not just me. I wonder if each time will increase in intensity or if at some point my body will get used to it.
I have been on Ajovy for 4 months, was on Aimovig for 6 months prior but came off because of severe constipation and muscle/join aches. On Ajovy- I still have constipation but it is slightly better than Aimovig. I also have joint/muscle aches but again slightly less… its like the areas of my body that might normally ache.. go from a level 2 ache to on Ajovy a level 6 (not constant).. causing me some sleepness night etc. I take Aleve and it usually stops it. I have also had weight gain but am not sure if it is because of these meds.
I recently tried stopping the Ajovy to see if my migraines would return (tons of lifestyle changes, less stress, since starting). 1 week later I had a massive mind blowing migraine and I realized that I will take the above side effects over this any day.
Aimovig reduced chronic 4 -5 days a week migraines to 1 a month and a few little headaches that Advil could knock out in between.. Ajovy has done even better.. I realized when I got the bad one mentioned above, that I have not had a horrible one since going on it and I haven’t had to take Imitrex in 3 months.. occasional advil only. So the side effects are worth the amazing benefits I decided and started up again!
I started Ajovy approximately a month and a half ago. I haven’t noticed a decrease in migraines. But what I have noticed is that a) my joints hurt and what with my profession being Contortionism, it’s not helpful, b) some gastric distress, and c) I’ve not noticed many other people say this (or have been willing to say this as, you know, awkward) but my sex drive has been completely obliterated. The past month I have been incapable of orgasm, and what with migraines limiting serotonin production I need all the extra serotonin I can take. I’ve only seen maybe two others talk about this but it is the only factor possibly involved in this change for me as I haven’t been introduced to any other medication since I started Ajovy.
My first injection was February 2019 and almost immediately I got the chills and became to run a low grade fever. My normal used to be 98.4 but ever since that day I am now 98.9 in the morning and 99.6 to 100.0 by nightfall. The shot itself worked wonders. Migraines fell to nothing and the pain in my neck stopped, but we stopped the shot for a month to get a handle on the fever and the shot stopped working. Just started Emgality a month ago and still running a fever. Has done nothing for my neck and I’m still waiting for it to work on my migraines. Not sure if I will stick with it because running a low grade fever every day is just awful. Has anyone else had this happen?
By KItty Wertz
I have been taking Ajovy for over six months. Side effects of hair loss within 2 months of start date. I am trying to find out whether anyone has gotten Tinnitus since taking Ajovy????