I decided to stop Ajovy too
I’ve given myself an injection of Ajovy in November and December with some improvement and without constipation which I had from Aimovig. However, Ajovy did not prevent all of my migraines, especially those caused by red wine, (I received some nice red wine over the holidays) and I still had to take sumatriptan (Imitrex).
This is not at all surprising; I always tell my patients that even the most effective treatment is not 100% effective – with enough triggers migraine will still occur. It is possible that with continued use of Ajovy my migraines would progressively get better, but my headaches are quickly and completely relieved by sumatriptan. Sumatriptan has a 25 year safety record and for over 10 years has been available without a prescription in most European countries (you may want to read my post on the daily use of triptans – it is by far the most popular with over 250 comments).
My next self-experiment is to try to prevent migraines with transcranial direct current stimulation (tDCS). We are about to begin a double-blind sham-controlled study and I will describe it in in an upcoming post.
Thank you for you time. It is greatly appreciated for those hunting for elusive answers. I was on Emgality for little more than a year. It worked great for my migraines. Although over time they seem to slowly increase in frequency. At the end of the year my insurance decided it wouldn’t pay for Emgality anymore but I could get coverage with Ajovy. So I took my first injection in January. I’ve had two now and closing in on my third. It has been fantastic for my migraines. They have barely been an issue. What I am wondering is if Ajovy has been associated with Hypotension. I have pulsatile tinnitus and have for sometime. I also have been diagnosed with SCDS which can cause pulsatile tinnitus. However, it has gotten more pronounced since starting Ajovy. Much more so. I can’t find any information regarding this issue so I was hoping you might have some insight. Thank you
Thank you for this tip.
Hey Doc, I too enjoy a nice red. I discovered a product called “Drop It”, it reduces both the sulfites and tannins in red wine without changing the flavor. I’ve only had one headache from red wine since I’ve been using it….about six months now.
It is good to hear that this blog has been so helpful for you. I do not know anyone in Atlanta, but I am sure that Emory has a headache clinic. You may also want to check with your insurance to see if they will pay for telemedicine visits. If yes, you can call our office to schedule a virtual visit with one of our providers. We use a HIPAA-compliant portal, Doxy.me. In the past, this would not be possible because of state-by-state licensing requirements, but with the COVID epidemic things have changed.
I found this website about 18 months ago and immediately began using higher doses of Magnesium after reading one of your articles, with which I did see some improvement; I went from headaches every day to having a 2 or 3 day respite from pain each week or two. In talking with you at that time, I discovered that I’m likely a cluster headache suffered rather than migraines. Recently, I begin consuming a low histamine diet (which is difficult) and have seen some improvement, yet, still not enough. I so desperately want to be at a place like other humans who awaken to a sunshiny day ready to embrace the world, rather than at 5 a.m with a throbbing headache on my right side which I do believe is tied to that nerve that runs along the side of head into the cheek bone. Anyway, I’ve recently moved to Atlanta from Maine where I had a Neurologist for decades (though you were more helpful in 5 minutes than he in 25 years). I’m hoping you might recommend a great neurologist here in Atlanta who might help me get to a more normal life. I have noted that when I end up in the ER with a headache, the oxygen and Magnesium IV’s make me feel heavily, the combo works great. Should I maybe have a script for Oxygen? Recommendations on a Neurologist in Atlanta would be greatly appreciated. Again, thank you for what you are doing here; your site is filled with tips and ideas that do actually work. Many thanks.
Emgality is very similar to Ajovy and if your fatigue persists, I would ask your doctor about trying Emgality.
I tried Aimovig for about 6 months, without any significant improvment, however my issue is more chronic daily headaches rather than the migraines with aura I get. I had to get a flu shot this year and had a dramatic increase in severity of headaches and frequency of migraines (with and without aura). I saw my headache dr. and he have me ajovy to try. I took 3 doses. I have been increasingly more fatigued. I did seem to quiet my headaches though, so that’s good, but this fatigue needs to go away.
Thank you for all the information. Please let us know how the tDCS study goes when you finish. Very grateful for all the valuable information you provide
I do sometimes prescribe metformin for patients without diabetes, usually to those who are overweight as it may help them lose weight and to those who get headaches from carbohydrate rich foods or from hunger. Metformin tends to keep the blood sugar steady, which reduces hunger and prevents headaches caused by a drop in sugar level. It is a safe drug, but is not proven to be effective in migraines, so I do use it when other treatments fail.
Dr Mauskop,
Could you please elaborate on your use of metformin for migraine? Do you prescribe it to patients that are not diabetic with good results? Is it considered safe and effective? Do you prescribe it only after they fail other tx? I wonder if it’s worth asking my neurologist about it. I am also going to request switching to Ajovy from Aimovig, since I am still struggling after one year on it. Thank you.
Yes, I’ve had some patients develop constipation from Ajovy too, although it is more common with Aimovig.
Is there any evidence that Ajovy causes constipation as well? My gastroenterologist doesn’t think Ajovy is to blame but I wonder. Ajovy has been a life saver for me but I wonder if you can/should go longer than 1 month between the shots especially if you do not have a migraine or is it not recommended?
I would ask your doctor about trying one of the other two drugs that are similar to Ajovy – Emgality or Aimovig. If you have not had Botox injections, that would be the safest and often very effective treatment. I also find that some patients do well on a diabetes drug, metformin, which can help you lose weight and improve migraines.
Thank you for taking the time to read my story, I have had migraines ever since I had a hysterectomy when I was 27, so I am now 55 this Aug, so I’ve had them for 28 years now, I only had them maybe two times a month, but mostly 1 time a month. They were so debilitating, that I would hurt so bad that I would rather had died, I couldn’t take imitrex or anything that constricted the blood vessels, I was also diagnosed with Raynaud’s, after my hysterectomy. The migraines seem to come about the same time every month as if I was having a period, but my gynecologist said they were not hormonal related, nothing I took would help me, I would feel the migraine coming on and within a few hours I was throwing up non stop until the migraine ran it’s course, anywhere between 24 to 48 hours of staying in the bed. About 15 years ago I had part of my thyroid removed, and now take 75 MCG of Synthroid. I my body does not tolerate meds very well at all, as a matter of fact my life story lines up with the lady from Florida and Georgia, that blog you, her story is mine to a T!!! About 7 months ago my Neurologist put me on Ajovy and that’s a miracle for me I mean life changing, I feel so blessed with no migraines, but I too thought I had a staph infection, went to the doctor and she put me on antibiotics and it cleared up, the minute I got off of antibiotics, it came back, mainly on my legs , butt, and stomach, it leaves scars once it heels, I know for sure it’s the Ajovy, because when my shot clears out of my system so does these painful itching bumps, I also have severe leg pains and joint pain, my doctor had to increase my synthroid, and I’m waiting to go back to recheck my thyroid levels. I do not won’t to stop my Ajovy shot because this is the only thing that’s helped me in 28 years. I’m concerned about my symptoms because of the shots. I exercise regularly, I’m overweight due to my thyroid issues , but not to bad. Again I’m thankful that I found this site and read about the girl from Florida and Georgia because that’s my total life story.
Thank you for sharing your experience and I would suggest that you share your experience with Teva and/or the FDA. They collect and eventually report these side effects if they occur in many patients. You are the third person I know of to report severe Raynaud’s syndrome and many have reported fatigue, joint pains, hair loss, and a variety of other symptoms. I would ask your neurologist about trying Botox, which is the safest treatment for chronic migraines.
Hey Dr. Mauskop – I am so sorry for the long post but I have a few questions about the side effects of the Ajovy injection and where to research/try next.
First, let me say, I love not having migraines but about 2 months after starting it (June 2018) I started experiencing some ‘odd’ symptoms. Until now, I haven’t tied them to the injection because I recently moved from Florida back to Georgia (grew up in south GA- moved to north GA for 4 years and then spent 2 years getting my MS in FL and now have moved back to where I got my BS) and my symptoms started about a month after moving back and have progressively gotten worse. It is worth noting I give myself the injections in my stomach only and I have never had any abnormal rashes anywhere close to my injection site.
First symptom, raynaud’s phenomenon has become insane. I will have my fingers go completely white after a workout in the heat. At first I attributed the inc reaction to it being colder in GA, but since it is 90+ deg now, obviously that has no effect. Also, a very odd development is when it is cold, my nipples get so cold, like with raynaud’s phenomenon, that they genuinely hurt and feel like someone is cutting them over and over with scissors. The pain is unreal.
Second, folliculitis breakouts on my thighs and shins. After 2 biopsies, prednisone for 2 months, a slew of topical and oral antibiotics – they determined the sores were nonbacterial and nonviral infections… so they have no clue… the breakouts look like pustular pyoderma gangrenosum and take FOREVER to heal and leave these wonderful scars that look like someone burnt me with a cigarette over and over. I had NEVER had this problem before – maybe a few ingrowns after a shave and a hx of dry skin/eczema but NOTHING like this. It seriously looked like a staph outbreak.
Third, I developed perniosis bumps on my fingers and toes. At first it looked like dyshidrotic eczema but then I got these deep purple, painful spots that were more under the skin than on top. This has been the most recent symptom to develop and started over the winter time when I was outdoors. So again, me thinking it was weather-related (since I am still used to the Florida heat) dismissed it and looked into ways of managing it with the expectation of when it got warmer, my symptoms would go away. But after yet another biopsy that took about 6 weeks to heal (scrape biopsy) and a slew of blood work I was left with no real conclusion because well, I am STILL getting perniosis outbreaks even with using creams, not taking hot showers, not rubbing my hands as much, using harsh chemicals without gloves, using gentle soaps and lotions, using lotions with lanolin in it, using topical corticosteroids and antibiotic cream, using hydrocortisone cream and hydroxine, etc., etc. While I have been able to decrease the progression of the breakouts, I still have these breakouts.
The only thing the blood work showed was an insufficient level of Vitamin D (20)… again I assumed it was because I went from being outside in the sun daily in shorts and a t-shirt to always wearing loose pants outside (because of the embarrassment from my skin outbreaks) and shielding myself from the sun more… I had normal B12, folate, T4, immunoglobulin E, TSH, normal CBC/platelets, sedimentation rate-westergren, RNP/Smith antibodies, RA latex turbid, anti-dsDNA and antinuclear antibodies, and comprehensive metabolic panel…
I have been looking into everything – my mom was recently diagnosed (by symptoms only, no genetic testing done) with Ehlers Danlos, so I thought that lines up with a lot of my other symptoms (chronic fatigue – dx in 2015 with idiopathic hypersomnia, restless leg syndrome/peripheral neuropathy – usually made better with ferritin above 30, night sweats, migraines, joint/muscle pain, 2 herniated lumbar discs since I was 17 along with protruding discs in my cervical spine, a chronic subluxing (dislocated 2x) shoulder despite extensive rehab, incredibly hypermobile joints everywhere that I have worked hard on stabilizing through muscle strengthening and never stretching to end ranges, chronic constipation/IBS, hemorrhoids (self-diagnosed but the hypochondriac/researcher in my actually thinks it may be a ‘minor’ rectal prolapse), low iron (hemoglobin is always normal), sinus tachycardia dx 2013, anxiety, etc.) but my symptoms don’t match my moms with the exception of the joint hypermobility and from what I understand it is genetically inherited as the same gene variation – so would produce the same or similar symptoms.
I also looked into Metastatic Crohns since they form very similar sores with the PGs and since following an anti-inflammatory diet (no red meat, no refined sugars, and no gluten) have seen no new sores on my legs but still getting new bumps on my hands. The old sores are healing-ish and the perniosis outbreaks are substantially milder. But I have also seen studies on Sucrose intolerance creating similar symptoms as one finds in Celiac/Crohns – I just haven’t seen much research on a sucrose intolerance creating the inflammatory skin response I have seen BUT one of the ingredients of the Ajovy injection (as I was researching gluten in drugs) is Sucrose.. so if I had a sucrose intolerance, could these sx be a result of the injection?
OR is it related to the fact that the drug in one way or another prevents the binding of the CGRP molecule? My understanding that the administration of CGRP is indicated in conditions like Raynaud’s because it leads to peripheral vasodilation and promotes the healing of ulcers….. which since Ajovy inhibits the CGRP protein and now I have increased expression of Raynauds and problems with ulcers healing, it seems to fit together that the Ajovy injection could have a hand in the development and SLOW progression/expression of these symptoms.
I would also like to note, I am a very active 25-year old with good muscle tone and generally low average body fat. I work in a very active healthcare field as an athletic trainer. No known drug allergies. No hx of any food intolerances. No hx of tick bites, no surgical hx, no extensive ortho injuries despite doing 3-4 sports in any given year. No family hx of any intolerances or immune disorders. In fact according to the 23 and Me test results I did, I am likely to tolerate lactose, I don’t have ANY of the variants for the 44 genetic variants it tests for including celiac, fructose intolerance, and SO much more. And the only two ‘positive’ things I have are I have a single variant and am more likely to develop age-related macular degeneration and hereditary hemochromatosis (clearly not a problem right now…) and there is a family hx of heat intolerance/salty sweaters and alcoholics who love beer – so clearly no gluten intolerance there.. lol so all in all an incredibly healthy family on paper – with me as the exception.
I have had an MRI for my brain (contrast), lumbar and cervical spine (both for disc related issues) that were insignificant except for the aforementioned disc issues and a deviated septum as a result of a broken nose/concussion in 2018. In 2014 I had a DEXA as part of a research study and it showed above average bone density. I have had a hx of low ferritin (as low as 4) but with normal hemoglobin levels. Since May of 2018 I stopped using any hormone BC because of the significant interaction with the Topomax I was taking at the time and since then my Menstrual cycle averages between 45-52 days with an average of 6-8oz of blood loss in the first 2 days (seriously) but then only a 5 day cycle with the last 2 days being minimal blood loss. My GYN exam has been normal and since starting Ajovy (and a less stressful job) my average HR has gone down significantly (dx with sinus tachycardia in 2014) to anywhere from 60-80 during the day and dropping into the 40s at night. I can’t remember the last time my heart rate was so ‘normal’. It does still spike when exercising – but to put it in perspective, when I wore the Holter Monitor there are readings of my heart rate well above 210 EASY when exercising but with no physical symptoms and always a sinus rythm.
I have always had unexpected side effects of long term medications. I have been on Topomax XR which started causing significant side effects after about 8 months of use, used most forms of BC and with the exception of the quarterly Depo injection, have ended up with negative side effects after about 4-6 months that caused me to try a new one. I have also been sensitive to changes in formula and using name brand medications for long term meds; most noticeably with Adderall and Depo – I didn’t know the generic formula changed, just developed side effects after long term use without any and called insurance which they agreed the formula or brand distribution had recently changed. I am currently on Bupropion 150mg 1x/day, Adderall XR 30mg/day, Zyrtec 1x/day, floradix 10ml 2x/day – if I remember, daily women’s multivitamins, and the ajovy injection monthly.
After all of this… if none of this makes any sense, the only other option/possibility I can come up with is. I am just crazy… and no.. no psychological disorders run in my family except a little anxiety…
Please help, if you can! I am down to give you any more information you may want. I just need something.
I have an appointment with my Neuro in July and GP in September so I want to ask the right questions and be able to discuss this and make an educated decision on how to move forward… because I love all things chocolate and this anti-inflammatory diet isn’t touching my sweet tooth BUT I also love being (almost) migraine free for the first time in over 3 years. So I am torn on how to go ahead.
Thank you so much for simply reading all of this. I appreciate it if you even got this far. Thank you!
We find some patients whose migraines do not respond to Aimovig can respond well to Ajovy. We usually wait only a month after the last shot of Aimovig before giving Ajovy. There’s no reason to wait longer.
Hi ..I’ve been on Aimovig for 3 months now without much success in eliminating migraines. Also experienced some muscle pain and constipation with Aimovig. How long should I wait before taking Ajovy? I’m a patient in your office ( Been seen by Nicole & Dr. Yablon) My Neurologist in NJ gave me a sample of Ajovy but suggested I wait 90 days from my last injection to try it. what has your experience been with patients switching from Aimovig to Ajovy. Thanks
This is clearly an allergic reaction. Injection site reaction does not spread this far from the injection site. I would report this to the manufacturer or the FDA.
My husband tried Aimovig and also discontinued it, and after 3rd injection of Emgality his entire thigh swelled up and after about a week developed hives around the injection site (thigh) and also spreading to calf and arm of injection side. Of course he has seen his family doctor and then after the hives went into the ER and is prednisone and has an EPI pen just in case. The ER doc called this an injection site reaction and not an allergy to Emgality. What is the difference and how does one differentiate between the two? Also, I would assume that this means he will discontinue that med. Thanks so much for this blog… we have had the hardest time finding good treatment in our rural area and your blog is great to help us ask better questions to our current Neurologist.
Thank you for all the information. I hope you find the tDCS helpful.
I stopped Aimovig and Ajovy mostly because I don’t really need them – sumatriptan works very well for me. I might have continued if they were more effective. As far as long-term side effects, it is a concern, but we do have data on almost 500 patients who have been taking Aimovig for over 3 years. So far, these drugs look safe. It is possible that some long-term side effects will become apparent after a larger numbers of patients are exposed for longer periods of time.
The device is tDCS, which delivers direct electric current, while eNeura is a TMS device – transcranial magnetic stimulator. I have not found eNeura to be very effective or practical to use. It is a bulky device that is used to abort a migraine attack during an aura. tDCS is also different from Cefaly, which is a TENS device – transcutaneous electrical nerve stimulator and it delivers alternating current to the forehead.
Dr Mauskop,
Are you stopping CGRP medications because you are concerned about potential unknown long term side effects?
Are you referring to the eNeura device? Thank you