Dr Robbins & CGRP Part I
We were privileged to have Dr. Lawrence Robbins doing a Facebook Live Chat in our group on May 21, 2019. Dr Robbins talked about the CGRP Medications one year after the first medication was FDA approved, and answered questions about how the efficacy and side effects seen in the pharmaceutical trials are holding up in widespread clinical practice. This document is a transcript of the questions and answers from that event, and the complete video can be viewed here: https://youtu.be/WZ7FAopqch8.
The CGRP and Migraine Community group welcomes anyone who lives with migraine as well as their caregivers. The group exists to support, guide and educate the migraine community through the emergence and use of this new class of migraine medications, CGRP inhibitors. You can find the group at: www.facebook.com/groups/CGRPandMigraine.
Sometimes, when you have hundreds of thousands of people taking a medication you see different side effects than seen in clinical trials with limited participants. Since the CGRP inhibitor medications were first approved we have seen a range of side effects: constipation, increased headaches, joint pain, hair loss, higher blood pressure, fatigue, depression, anxiety, and more. Putting this in context, all classes of medications have side effects but that doesn’t necessarily mean that we are going to stop using them. For example, with Lasik, 1-2% of people have bad side effects, but it is still in widespread use. It becomes a risk versus benefit question for each person.
SIDE EFFECTS QUESTIONS
- There appears to be a small but significant percentage reporting side effects that either were not seen in the clinical trials or which were not considered “statistically significant.” Do we know why these side effects may present a different profile in real life compared to the studies?
If you look at the trials for CGRP vs real life there are many differences in the side effect profile, but in some cases we do not know why the side effects are happening. Sometimes if you give 300,000 people a medication you will see a number of odd side effects that don’t show up in studies with only a few thousand people. It won’t be long till we have 700,000 to a million people on these medications, and we may see even more odd side effects emerge. CGRP itself is sort of a complicated large molecule made up of three or so components. Then there’s the receptor, which is needed for a compound like CGRP to attach to in order to exert its physiologic activity. When the receptor is blocked by Aimovig, then CGRP is inhibited and theoretically you’ll have less inflammation, improved migraine. However, Ajovy and Emgality, as well as Eptinezumab which is an IV version expected to come out next year, all these attach to the CGRP itself and don’t touch the receptor; there’s a lot of different physiologies between the two mechanisms, so it is possible to see side effects to one without seeing it in the other.
Technically, these are large molecule medications which don’t cross into the brain; we call it the blood-brain barrier. However, there are some areas of the brain that aren’t protected, such as the hypothalamus and the pituitary gland, and there is some penetration. Evolution has deemed CGRP very important as a molecule for inflammation, wound healing, protecting the heart and brain from stroke and heart attacks, and more; it is found in almost every organ in the body. We can’t pretend we’re not going to have any side effects going forward for years or decades, and right now we’re seeing how all of this plays out in clinical practice.
- Patients seem to be reporting a wide variety of side effects from the CGRP inhibitors, including severe constipation, worsened migraine, joint pain, fatigue, bloating, weight gain/loss, blood pressure changes, and more. Which ones are you most aware of?
- Migraine: we’ve certainly seen worsened migraine in some people. In general, if migraine attacks are worse for 2-3 weeks or a month we don’t want to continue the medication and then we see that effect going away. In some people the frequency of migraine attacks remains the same, but the severity of them reduces, and that can make all the difference in quality of life to those people.
- Bloating & Weight Changes: weight gain can be a problem, and if significant enough we stop the medication. This does not appear to be as much a problem as with other medications such as Lyrica, Depakote, gabapentin and the tricyclic anti-depressants, but we are seeing it. This could be because our feeding and hunger is centered in the hypothalamus which is not protected by the blood-brain barrier. A few people have lost weight, and if it is significant then we stop the medication.
- Constipation: this is an issue of course, probably more from Aimovig, which is a receptor blocker, than Ajovy and Emgality which attach to the CGRP peptide itself. People who have an issue with constipation (e.g. IBS-C) may need to have caution using these medications.
- Depression & Anxiety: we’ve seen some central psychological side effects for some reason.
- Heart-Rate: There are not a lot of case reports about this, but it has been seen on occasion.
- High or Low Blood Pressure: I’ve seen a few people, more with higher blood pressure. However, it hasn’t been a huge problem in general, and we’ve even had people with high blood pressure go on these medications without a major problem. Since blood pressure can go up for a number of reasons, sometimes the only way to know if a medication is causing it is to stop the medication and see if your blood pressure normalizes, bearing in mind that these medications have a long half life so it could take a while to get the answer.
- Hair Loss: this is a frequently seen side effect, but no one has any idea why, and it’s a real phenomenon. Sometimes we use Centrum Silver which is a multivitamin with some extra zinc, biotin, or certain B vitamins, but hair loss is a very, very tough thing to treat and understand.
- Vision Changes: we haven’t seen much of this. A lot of medications cause vision changes (e.g. amitriptyline, topiramate), but we’re not seeing this so much with the CGRP medications.
- Joint Pain: this is commonly being seen, sometimes even moderate to severe. In some people this improves but not in everyone.
- Tiredness/Fatigue: this is also commonly being seen, sometimes even moderate to severe. In some people this improves but not in everyone.
- Gastrointestinal Issues: in theory these medications may inhibit the healing of ulcers, and they do affect the GI tract because there’s a lot of CGRP in your stomach and GI tract. How much this is actually happening remains to be seen. The same goes for reflux (GERD) – a lot of people with migraine have reflux also so it can be challenging to know if the CGRP medications are aggravating or causing this. Also, in comparison with the anti-inflammatories, they appear to be safer on the gut in the long term.
- Auras: since these medications can somewhat get into the brain, they can potentially irritate the occipital nerve lobe which can start auras. For someone whose auras are severely worsened, losing vision, numbness or weakness, I would stop the medication. Daily auras can potentially turn into a stroke and we are concerned about that, particularly for those people who are on the birth control pill and/or who smoke. However, bear in mind that while the relative risk may increase, the absolute risk is still low.
- Breathing Issues: this is very rare and not reported much.
- TMJ or Jaw Problems: it is unlikely that these medications cause jaw problems.
- Tinnitus: this is very common with people who have migraine and unfortunately can happen with any medication. However, NSAIDS and anti-depressants are more likely to trigger tinnitus than the CGRP medications. If you get tinnitus, you should see an ENT.
- Mast Cell Activation Syndrome: Mast cells are a part of your inflammatory response system, and when activated they release inflammatory proteins. We call it the inflammatory soup (bradykinin, histamine and substance b). In some people these proteins are very active and constantly releasing, causing allergic type symptoms. Mast cells are very important in this whole immune cascade.
- Are the side effects we’re seeing something to be concerned about?
Most people have mild side effects to the CGRP medications, if they have any side effects at all. Also, to put it in context, ALL medications have side effects (e.g. topiramate can cause kidney stones, severe spaciness, anxiety, depression, and sometimes bipolar; anti-depressants have a whole slew of side effects; all the anti-convulsants and blood pressure medications used for migraine have a variety of side effects, particularly tiredness and weight gain). So, it’s not as if just because a class of medications has side effects in 10-20% of people that we’re necessarily going to stop using it. As with anything new, we will know more over time.
- Are side effects more common in people who have comorbid conditions such as fibro, etc.?
People with migraine often have a very sensitive central nervous system. We call these central sensitization syndromes, and people often have more than one of them such as: fibromyalgia, chronic pelvic pain, complex regional pain syndrome (CRPS), irritable bowel syndrome, POTS, TMD/TMJ. Most of our serotonin is in the GI tract, and the serotonin system with people who have migraines doesn’t work quite right, so we see a lot of IBS, cramps, reflux, constipation, diarrhea, etc. People who have 2 or more of these syndromes have a very sensitive central nervous system and are likely to have more side effects from certain medications, in particular the CGRP inhibitors, so it’s important to “go low and slow” when trying them. However, many of the more prevalent side effects we’ve seen are with people who don’t have sensitive central nervous systems but just have migraine; they start these medications and they get tired, have joint pain, constipation, or worse migraine.
- Have you seen an issue with healing inhibition, especially relating to surgery?
In theory CGRP medications can inhibit healing and decrease healing, and so in theory we should taper off before surgery. However, clinically we haven’t seen healing inhibition much at all or even heard of it.
- If a patient tries one CGRP inhibitor with no results but lots of side effects, is it worthwhile trying another?
That’s a million dollar question and I’ve written two studies, one on Aimovig and one on Ajovy and Emgality from clinical experience. I think that if people have a lot of side effects and/or lack of efficacy from either Emgality or Ajovy then they are likely to have the same or similar results from the other one since they both attach to CGRP. However, this is not yet proven, and in other classes of medication, if people don’t do well on one SSRI for depression, or one beta blocker for blood pressure, they may do well with another one. So, it doesn’t necessarily mean we just have to stop the medication, or not switch. In general, if people have side effects to Emgality or Ajovy, and they are more than mild, I’m not switching them to the other one because I’ve seen similar side effects when switching. Having said that, because Aimovig has a different mechanism by attaching to the receptor, I do tend to switch to or from that one.
- We have been told that these medications don’t cross the blood-brain barrier, but your articles intimate that there are some areas of the brain which are not protected. Can you please amplify on that?
As a whole, these are protected from going into the brain by the blood – brain barrier, but there are several crucial areas that are not protected from the blood – brain barrier such as the hypothalamus & the pituitary gland (where we have a lot of hormones) There are some hormonal issues which I think can happen that did not show up in the studies and impact things such as the menstrual cycle, depression, and anxiety. There’s also a part of the brain called the “area postrema” that’s not protected, and because this is the nausea center in the brain, and this can result in or aggravate existing nausea. Sometimes this goes away during medication use, but not always.
- In your opinion, do these medications potentially impact the immune system even though officially they have been “modified” so that this doesn’t happen?
The CGRP medications work on the immune system by dampening down the immune response. They specifically help reduce inflammation around the head which is theoretically caused by CGRP. However, we are not totally clear yet how these medications work, so there are a lot of questions.
- When do you expect the medication package inserts to be updated with these side effects?
The FDA is slow to change the labeling, and it may take a year to do this or even longer. We’re trying to effect this change sooner, and I’ve sent some letters to the FDA. March 31, 2019, Erenumab (Aimovig) FDA reports came out on FDA adverse effects website, FAERS. They had 12,000 side effects reported since May 2018, with about 1,200 of them being serious. It is unlikely that all of these are caused by Aimovig rather than being coincidental, but there is still a significant amount of side effects that should be included in the package insert. A lot of doctors are not aware of the potential side effects because the original insert doesn’t list them, so they say, “There’s no side effects,” even when patients are reporting to them. That’s a problem – we’re not legitimizing what the patient despite the insert having an unrealistic side effect profile. What is interesting is that the efficacy profile seems to be holding true, but the side effects one needs updating.
CONTRAINDICATIONS & SAFETY
- Are these meds contraindicated for people with an immune condition such as CVID or lupus?
The immune system and migraine go way back. In 198I, when I was new in practice, I became convinced the immune system was the key in headaches. We did some studies on Helper Suppressor Cells and found some interesting things. CGRP works on the neuro-immune system and is an immune blocker, dampening down the immune response. With migraine, we get a lot of inflammation around the head with a release of inflammatory proteins that feed to the bottom of the brain then go up into the brain stem and the brain itself. If we can cut that inflammation out and block CGRP from starting the inflammation, it can theoretically help the migraine attacks. However, it’s not always clear how something works or what is happening. For example, the CGRP medications have a long half-life (around a month), and once you’re at a steady state they should last quite a while in your system. We’ve had a number of patients where the medications stop working after a week or two. Theoretically, that shouldn’t happen! This tells me, there’s a lot we don’t know about why these work and why these don’t work. So, in short, there’s no absolute contraindication with immune deficiency, CVID, Lupus or Rheumatoid Arthritis that we know of yet, but we are monitoring it.
- What are your thoughts on lower doses for people who are very sensitive to meds in general?
I’m big on lower doses in general. The problem with these medications is that except for Aimovig we only have one dose available. Technically with Emgality you’re supposed to do two of the shots the first time (a loading dose), but I tend not to do that in case people are sensitive to it. I’d rather start low and take another month or two for it to work than risk side effects.
- What are your thoughts on the safety of CGRP medications for patients with faulty heart valves, congestive heart failure, stroke, thrombosis, or other cardiovascular conditions?
We don’t know conclusively, but so far this has not proven to be a problem. However, with stroke in particular, I think that in someone who is post-stroke or at high risk for stroke I would tend not to use these. I have seen reports of strokes in a few people, but this is out of 300-500K people, so it is likely to be fairly rare, but it’s a consideration. Also, in congestive heart failure or other cardiovascular conditions it’s a million dollar question! If someone has bad arteries in their heart or are high risk for heart attack, I have not been using these medications. In reality, we haven’t seen very much in the way of heart problems with the CGRPs, but that’s not that it can’t happen, or that it won’t happen in the future.
- Do you recommend a “wash-out” period for patients who are not experiencing success before they try a different CGRP medication? What about those who stop due to side effects?
Every doctor does this differently. I tend to wait 5 weeks after the last dose of CGRP. Some doctors are waiting two months or even longer, others are more cautious if the switch is due to side effects, and some are waiting one month and not worried about it. Clinically we have not seen a problem switching so far.
- Can these medications be used with other biologics?
There are some people with Rheumatoid Arthritis on Humira or Enbrel, or Multiple Sclerosis on monoclonal antibodies. We haven’t seen too much in terms of interactions with these, and theoretically they can be used together.
- Can they be used in combination with Xarelto or people who have blood factors that lead to coagulation problems?
Xarelto and Coumadin are blood thinners and there haven’t been contraindications yet. For those with blood factors, probably these drugs do not increase risk. However, we don’t know yet if there are going to be rare side effects emerging.
- Are the CGRP medications ok to take if you have a history of cancer?
In theory we haven’t seen a reason why they should be contraindicated.
- Are they contraindicated with a pituitary adenoma?
The CGRP inhibitors do get into the Pituitary, where all your crucial hormones are, particularly growth hormones in kids and the thyroid hormones, so these can be affected. So far there have not been studies done on this and that is an area of concern.
- Can we combine these with other drugs?
The good news with CGRPs is that there are no real drug interactions with all our oral drugs such as Inderal, Amitriptyline, and the Triptans. They also don’t hurt the big organs such as the liver or kidneys because they aren’t cleared through them but rather are metabolized through the lymphatic system.
- If someone is not responding to 70mg Aimovig have you had success by increasing it to 140mg?
A person isn’t getting much benefit on 70mg of Aimovig we would increase to 140mg. We used to have the 2-70mg injections, now this has now been replaced by the single 140mg injection which puts us at a little bit of a disadvantage because it limits our ability to prescribe 70mg every 2 weeks for those who stopped responding at the two week mark each month. That prescribing was off-label, and I’m not sure that even worked, but this option has now been taken away from us.
- We have heard reports of people responding to the medications and then the efficacy wearing off each month before the next dose. Have you seen that and why would that be?
These medications have long half lives in the body, taking around a month to be at 50%, so in theory they shouldn’t stop working once they have built up in the body. However, in some people they appear to work and then stop working after 2-3 weeks. This theoretically shouldn’t happen and just goes to emphasize that there is so much we don’t know yet. In general, when this happens we have not seen an increase in efficacy again and we tend to switch medications. However, bear in mind that there are a lot of triggers that come into play with migraine, so the change could also be impacted by things such as the weather, etc.
- What is your experience with people who initially respond but then stop after a few months?
In my studies, sometimes they stop working. I think that pretty much at the end of two months you can predict what is going to happen going forwards, but this is not always the case. Right now, we don’t know why certain people stop experiencing success after several months.
- How do we know whether someone is going to respond to the medication or not?
In my experience, the first two months generally give an indication for how people will respond going forwards. If someone has done really well they are probably going to continue doing well, and vice versa. However, this is not always the case. I like to give these medications two or three months, and I don’t think it’s necessary to wait 6 months to know. I’m studying any predictors of why people might have an excellent response vs non response – 0, 10 or 15% response. The only predictors out of the 20 items we looked at so far that seemed to predict poor response are daily opioid use and severe refectory headaches (severe generally meaning decades of headaches, multiple medical problems, central sensitization syndromes like fibromyalgia, and a history of treatment resistance). These patients are less likely to respond.
- Is it possible to have the CGRP stop the pain of migraine but not the other symptoms such as nausea, photophobia, etc.?
That can happen, just as with the triptans or any other medication.
- Have you seen success with traumatic brain injury, cervicogenic headache or occipital neuralgia?
I have not seen success in this area. In general, if patients have not had migrainous-type headaches, or if they have daily chronic headache without migraine features, these medications do not seem to work. The same is likely to be true for cervicogenic caused headaches and occipital neuralgia.
- Does it help body pain that comes with migraine?
If the body pain is associated with the migraine and happens during the migraine attack, often any drug that helps with the migraine will help the body pain also.
- Are you having any success with Hemiplegic migraine or basilar migraine?
Hemiplegic migraine causes severe neurologic deficits or problems usually on one side, coordination and visual problems, numbness, and weakness, lasting about 20-30 minutes. I tend to stay away from the CGRPs for these patients because I think the risk for stroke is too high. Hemiplegic migraine is tough to treat. Sometimes we use preventatives like Valproic, beta blockers, or amitriptyline which might cut down on the cortical spreading depression and the brain firing, as well as anti-convulsants such as verapamil. The two most commonly used medications for hemiplegic migraines appear to be Verapamil and Depakote. For basilar migraine I think there are more side effects possible, and in particular I worry about stroke, so I don’t tend to use these medications for basilar migraine even though it’s not officially contraindicated yet.
- Have you seen any success with people who have cluster headaches, either episodic or chronic?
We have had some luck with cluster headaches and Emgality in particular has some potential. Emgality was just FDA approved for preventive treatment of episodic cluster headaches. I had one chronic cluster patient go “off label” on Aimovig. He had a 50 year history of severe headaches every day and he’s had no headaches for 4 months on Aimovig which was amazing, since nothing else had worked!
- In those patients who are not super-responders but have some positive response, are you seeing increased efficacy at the six month mark or longer?
That can happen. Some people are better at 6 months than at 2 months.
- Are you seeing the same efficacy as seen in the trials, even though the side effect profile is very different?
The side effects profile is turning out to be very different than the studies and there are a lot of reasons for that. However, the effectiveness profile is around the same. In short, about 50% of people get about 50% relief or better. There’s a group of people (around 10-15%) who have an excellent response. Then there’s a group who get zero response. If you’re an excellent responder, it’s wonderful, but for those who have had severe refractory migraine for many years then even a 20-25% improvement can change your quality of life.
- What is the placebo effect and how much does this come into play?
The placebo effect comes into play quite a bit, but it tends to go away over time, often around 2-3 months. There’s also the “nocebo” effect which works in the opposite way. There’s also placebo by proxy where for example if a parent says a medication worked really well for them I’m more likely to give it to their 18 year old daughter – this isn’t just placebo by proxy, but there’s also a genetic component with parents and kids and drugs. This works vice versa so that if something was terrible for a parent I won’t give it to their child.
- Do these medications help with New Daily Persistent Headache (NDPH)?
This is always more severe and tougher to treat. The CGRPs could work if the new daily persistent headache has more of a migraine type component, however, if it’s just chronic daily headache: aching, hurting with no throbbing component or associated symptoms like sensitivity to light and sound, they are less likely to help.
- What about using them with Medication Overuse Headache (MOH)?
I think MOH is over diagnosed and poorly defined. A lot of people are designated with MOH or rebound headaches, but is it true? Many people may be using a lot of medication, but to prove that they have MOH from that medication is not easy to know; we have to take a careful history and take them off the medication to know for sure. It’s complicated and easy to confuse “medication overuse” with “medication overuse headache.” Over-diagnosing MOH stigmatizes people, especially when we don’t give them enough abortive medication and preventive medications have not helped. Only about 45% of people find a preventative that works long term and which they can tolerate. In short, the CGRPs can work even if you have MOH and even without stopping the other medications. They give us another tool that is invaluable.
- There is a lot of discussion about whether the injections should be taken every 28 days or once a month. In your experience and opinion is there a preferable way or is it ok to be flexible?
I think that it shouldn’t be a big problem which specific day you take it on within that range.
- Should we wean off after a year?
We used to do this with some drugs in the past and take what we call a “drug holiday” for a certain amount of time. However, with the CGRPs, there’s no evidence that this will help or is necessary. What I’m worried about are the long term side effects, because mostly what we have been talking about are the short term ones. We don’t know right now whether there will be serious long term side effects. There is some pretty decent data on Aimovig for 5-6 year usage, but it’s a very limited number of patients. The question is, over 10-20 years, and once we go over a million patients, what’s going to happen? We don’t know the answer to that. CGRP does a lot in the body, which is why I don’t want to use them in kids under age 18 or even 20 if we can really help it. We don’t know hormonally your long term issues. Hopefully we’ll get lucky and won’t have any serious long term issues, but that remains to be seen.
IN THE PIPELINE
- What are the differences between the three CGRP inhibitors currently approved and eptinezumab, the IV version expected to be approved early 2020?
The three that are out are subcutaneous injections. Alder has one expected to be approved early 2020 which is intravenous every 3 months. It’s a little stronger according to the data and it works reasonably well. In addition, it could work faster since the administration is different.
- What are the gepants?
The gepants, which are expected to start being FDA approved late 2019, are small molecule CGRP inhibitors. They do penetrate the blood brain barrier and so may have more side effects; however, they also have much shorter half-lives. They are mostly going to be used to abort or stop a headache in progress and the efficacy remains to be seen. The most important thing is that they don’t shrink the arteries, unlike the triptans, so someone at high risk for heart problems or stroke may be able to take them. It will probably be tried in people where triptans have not worked or who cannot take triptans.
- If the CGRP monoclonal antibodies aren’t working, are the gepants likely to work?
They work differently. They are both CGRP inhibitors but that doesn’t mean the gepants necessarily won’t work if the monoclonal antibodies don’t. What I have unfortunately seen from the studies on some of the gepants is that the effectiveness is relatively low so they are unlikely to be a huge miracle for anybody, however they may be worth trying. In addition to these, there is another medication expected to be approved by the end of 2019 called Lasmiditan. This is NOT a CGRP inhibitor and is more like a triptan but doesn’t affect the heart. Lasmiditan causes dizziness as well as other side effects, and may also not be as effective as the triptans, so unlikely to be any great miracle, but could provide a great option for those who can’t take triptans or who don’t respond to them.
- Can we combine the gepants with other drugs?
The small molecule gepants do go through the liver so we’re going to have to do liver tests.
Do these medications not work for cervicogenic headache because CGRP is not released in these?
It’s not that simple. You can sue, if certain criteria are met.
I’ve spoken to two well regarded lawyers, both agreed a suit could be possible in the USA, but much more difficult in Canada, where we are.
It’s definitely worth looking into if you’re American.
My dad was a medical malpractice lawyer for 50 years so I learned a lot about lawsuits from him.
When the FDA approves a drug it’s understood that not all side effects can be known just from the relatively small number of patients in the trials. American law says a lawsuit like this is not intended to punish but to compensate so there would have to be lasting and pretty serious damages from the side effects. If you really wanted to sue though, you could absolutely get an American lawyer for the lawsuit if the drug maker is American, it wouldn’t matter that you are from Canada. Good luck if you choose to do so but one only has in most cases 2.5 years to bring a lawsuit.
I do wish more thorough studies had been done before these were released to the public. I had great success with Emgality for a bit over a year, then it gradually faded out until I finally stopped use for a month before switching to Aimovig this month. It hasn’t completely kicked in yet, but neither did Emgality at first. I had constipation at first with Emgality, and have it now with Aimovig. But after reading this several times now- I don’t know which is worse, being dead from side effects, or as well as dead from the migraines.
Wait, yes I do. Now that I’ve been able to experience life as an almost normal person, it’s cruel to find out they didn’t bother to find out if it was safe or sustainable.
Nurtec is $1,000 for those 8 pills, and my doc and I have already agreed it would be something I’d have to take atleast every other day for any hope of success.
Thinking back to the doctor decades ago who no longer wanted to deal with me because the extent of my imitrex use scared him is a joke in comparison to the side effects presented here.
I’m wondering if there’s a correlation between CGRP medications and Reactive Hypoglycemia. This seems to be one of the only sites acknowledging some of the side effects. I was taking Emgality for 3.5 years and recently diagnosed with Reactive Hypoglycemia after a year of feeling unwell and struggling to find answers. Wondering if there are other cases of this.
Hi Dr. Robbins,
Due to having dealt with ischemia of the colon twice I’ve been prescribed Nurtec. It’s been a game changer. Recently due to needing more than the 8 pills my insurance approved I’ve been switched to the preventative Qulipta with Nurtec as my abortive since I can not take vasoconstrictors. Is this combo safe since they are both gepants?
Very informative article, thank you!
I was shocked to see Mast Cell Activation Syndrome mentioned. I have chronic migraine and MCAS. Can you elaborate more on the relationship between the CGRP injections and MCAS? Neither my immunologist nor my neurologist have mentioned this before. Emgality and Aimovig did not help me, but I’ve had a decrease in frequency and severity with Ajovy.
I suffer from cluster headaches, classic pain migraines, and chronic vestibular migraines. I started on Emgality, but then my insurance made me switch to Aimovig. After 5 months on Aimovig, I felt the pain migraines were slightly better, but the VM flared up (motion sickness/nausea) and the constipation was unbearable. They just switched me to Ajovy, so in a few months, I can write up a comparison on all three! Anyway, I saw mast cell activation has been reported. Does that more specifically include a burning sensation and/or flushing of the skin side effect?
Mast cell activation could involve flushing yes, but is not a major side effect of the CGRP monoclonals; but this class of meds has more reported side effects than any class in history…Lawrence Robbins, M.D.
I am thinking of stopping emgality. I have been on it for two years, I have gained weight (at least 20 pounds) I am only 5ft tall so that’s a lot for me, and as I am writing this today I am incredibly bloated, which happens often days after my injection. I am exhausted more so in the mornings, I used to walk 4 miles daily, no way can I do that now. I was biking when it was cooler, 8 miles 4 days a week, still no weight loss and I have heart palpitations now. Over the summer I am having a new thing, heat intolerance (I live in Florida), I came home from a morning bike ride and threw up, it felt similar to heat exhaustion. When I first started Emgality for 6 months I had sinus/sore throat problems but that went away. My migraines went away, I thought this was amazing, but all these other issues are insane to deal with. With my migraines I get severe dizziness, visual disturbances and Emgality has been salvation for that but not worth this hell. I have brain fog, I have issues finding words, and there are days I just feel out of it. I grew up with severe nausea with dizziness that was always ‘hmm, maybe the flu’ my neuro thinks it could have been migraine. I had hiatal hernia repair, gal bladder disease in my 20’s, I am 47 now, had a hysterectomy too. Oh and I have a meningioma, but it’s small, stable, in the middle of the brain and the neuro doesn’t think it is causing any issues. I just want to feel somewhat normal again and not drag around this weight. I am concerned about the heart palpitations too, never had that until this injection. Dr. Robbins, I am glad you are posting all this information, because it can be hard to find. Oh I also couldn’t manage oral medicines as I have diverticulosis that has flared, and have never tolerated many meds. In fact, pain meds are a no go for me. The only saving grace for my nausea and anytime I have had surgery, instead of pain meds I was always given phenergan, the only thing that ever worked. I tend to throw up anything else and have been told I have an intolerance to many drugs. One more thing, I have dry eyes now, severely, I have been tested for autoimmune (Sjogren’s) but the dr says nothing showed in the blood work. I forgot to mention I started getting severely dry eyes and very swollen lids a year in, also never had that before emgality. Maybe a coincidence, I don’t know if anyone has reported this as a side effect but I always had wonderful eye health. Stuck me on restasis, so far 3 months in, no change. I just feel like it’s all snowballing, one problem solved in exchange for new ones.
Weight gain and autoimmune symptoms are commonly observed due to the CGRP monoclonals(along with may other adverse effects). These are useful drugs, but due to the side effect profile I think they should probably be reserved mostly if people have failed 5 other approaches, including Botox (Botox is equally effective but with few adverse effects)….L.Robbins, M.D.
Actually, Botox has not been effective for me at all and I’ve tried it 7 times and with different doctors and different protocols. I’ve had migraines since I was 7 and I’m 57 now. I also have several autoimmune diseases & FM all since I was 22 .
Emgality helps somewhat and Ubrelvy helps a lot; no other drugs have ever helped my migraines
I have had migraines since I was 6. I have been diagnosed with several kinds. I have taken all kinds of meds. I was diagnosed with the genetic disorder Ehlers Danols Syndrome when I was 40. That explaimed some things. I have some gastro issues that goes hand and hand with my EDS. Oral medication does not work well with me due to my gastroparesis. I was averaging 20-25 migraines a month and still managing to work full time. Nothing like carrying those plastic vomit bags from the hospital every where you go. I thought the Ajovy shot was great. I was on it for about 18 months. My migraines went down to about 2 a month. I didn’t even have those mild low break through headaches. Head was clear. It was so nice. I put on 50 lbs. My weight has never really flucuated. It has been crazy. Thankfully i had ran blood work before I started the shot. I was also tired all the time. I am a person who is always on the go even when I had a migraine. I could barely keep my head up. My doctor ran blood work and found that Ajovy had killed my thyroid. It was producing nothing. I wasnot on anything new and I could 100% say it was due to this shot. I was cold all the time, my hair was coming out, my nails were super thin, I was having horrible brain fog. I have been off now for 18 months and I am still not back to normal. I am on multiple meds trying to get my body back in order. I am still 23 lbs over weight (better than 50). Doctor and I are strugglinng to get my body back to normal. We are both hopping my thyroid isn’t completely dead and I can eventually get off the meds but we don’t know. We both reported the information to the FDA but it has yet to be listed. I am in a support group for migraines and several people have had thyroid issues. So this is a side effect they are not reporting. Blood work should be mandatory before starting these meds and while taking them.
Hi Dr. Robbins,
I have been taking Ajovy for the past 10 months and I have been migraine free for over 3 months. However, I have noticed extreme fatigue settling in as well as anxiety and depression in the past 1-2 months.
My question to you, are you hearing more about these kind of side effects with Ajovy?
Thanks for the question and answers on CGRP antagonists research it has been very helpful.
Am really glad I found this information. I am a multiple ischemic stroke survivor and also have had multiple aneurysms and craniotomy surgeries to try and deal with these, 3 surgeries so far for 4 aneurysms one, on the ICA just below another clipped, not being able to be treated other than temporary wrapping. Some of these surgeries were classed as dangerous and very complicated. One resulted in SAH and numerous other problems which has, along with ischemic strokes, left me with multiple areas of gliosis, encephalomalacia and disability.
I have been given Ajovy to use each month for the past 4 months. I had success with Botox injections however they were canceled by the hospital. Since having Ajovy I have had numerous side effects. I am scared using Ajovy etc since I’ve really suffered and so has my family from being left such a mess after health issues. I have chronic pain also from numerous things. The fact that I have Cerebral Small Vessel disease also and Ajovy is considered a vasoconstrictor or something like that should I be given this medication to use? I cannot cope with anymore strokes or brain issues let alone surgeries. My family, I don’t want to burden them anymore with yet more problems.
I was told that a was safe, no side effects, and would stop my migraines without any issues. It hasn’t stopped them although duration and severity seems to have lessened a little. Side effects! Ugh nausea, digestive issues, bloating etc, weight gain is ridiculous. A really big issue. I feel that due to damage of one temporal lobe, encephalomalacia, being very close and causing issues with hyperthalamus, olifactory etc that it’s causing weight gain and some other issues to be more prominent. I have gained an average of 5/6 kg per month. That’s huge. Crazy thing is I am not seeming to eat really much more than always. I’ve never been this heavy. I’m a small built person and this weight gain is really uncomfortable and quite painful. Hair loss is also bad. I get quite dizzy or off balance more so than prior and a few other things too.
Life is hard enough day to day without adding more problems. I’m tired of everything causing more issues especially after being told it’s fine for me to take. The neurologist who gave me the Ajovy was well aware of my health history.
Sorry for the long comment. I do not articulate as well as I once did.
Cecilia, it has significantly, yes. Now, with bp meds it is around 111/60, so the cardiologist is going to remove me from bp meds.
I am a Retired, board certified registered nurse. I am 72 and have suffered migraines since my 30s. Working with my neurologist I started taking Emgality injections 6 months ago with so far a complete resolution of my migraines! I will take Ubrelvy 50 mg for a breakthrough headache of which I have had only about 3 milder headaches in the last 6 months. I have experienced a worsening of my constipation, but I can deal with this with OTC bowl preps. and increasing my fiber.
As I am on Eliquis for treatment of my A-Fib. I could no longer rely on NSAIDS for pain relief as they increase bleeding time as well. The CGRPs do not have that effect and have come to my rescue! My blood pressure and heart rate have not been effected.
Needless to say I am grateful for these CGRPs!
YESS THESE HAVE BEE VERY GOOD FOR MANY PATIENTS; DESPITE MY CRITICISMS AND ISSUES, WE DO PRESCRIBE THE CGRP MONOCLONALS; BUT I DO THINK, BECAUSE OF THE ADVERSE EFFECTS, THEY SHOULD BEHIND BOTOX AND OTHERS, NOT FIRST LINE….DR. L.ROBBINS MD
I’m a 44 year old respiratory therapist who has suffered with migraines for over 20 years. Have tried pills, injections, botox, O2, dietary changes, & improving my sleep hygiene. Nothing touches it. I have daily headaches that last most of the day with migraines popping in approx 15 days a month. Debilitating migraines. Qulipta was my PCP’s miracle drug of choice to try next. Been on 60mg daily for almost 6 months now & I will say~ not even the start of a headache have I felt since day 2 of the med! It was life changing!! Until I started feeling “OFF”? So exhausted with chronic aching all over. Almost like the flu 24/7. At first I chalked it up to not feeling well, maybe Covid, maybe the vaccine? It couldn’t be the one pill that’s resolved all my head pain?!!! I’m convinced it is. It’s now day 5 off this med & slowly the fog is starting to lift. Depression, anxiety, panic attacks, OCD, high blood pressure, missing work & daily life due to be confined in bed since getting dressed takes everything out of me & I hurt everywhere. Not to mention constipation, selling of hands, feet, and ankles. All side effects of this drug that I ignored because I was finally migraine/headache free! But my body started shutting down to the point I could no longer ignore it and now my headaches are back.
Miserable with a pounding head & light/smell sensitivity? Or miserable because I feel like I’m dying & can’t be an active part of my own life?
Why should I have to choose?
The long term effects of Qulipta are still unknown, but the 6 month effect was hell enough for me to learn my lesson.
Prescribe/Take with caution please!! This is not the wonder drug they are marketing.
Interesting. I was on Ajovy and my blood pressure spiked to 183/125 and I’ve never had high bp in my life. After switching to Qulipta a few months ago and Ajovy slowly metabolizing out of my system, my blood pressure is actually going back to normal. The cardiologist is considering removing me from bp meds if it continues to drop even lower. So far so good, knock on wood.
Same here except with Emgality. I’m going to discontinue to see if that is indeed the cause. Has your blood pressure gone down?
I am taking both Ajovy and every-other- day Nurtec. My migraines are now extremely rare, and milder, and I have been very pleased. I had previously tried both Aimovig and Emgality, and had initial success that waned after a few months. Nurtec had never worked as an abortive for me, but seemed very helpful as a prophylactic.
I had been unaware of the side-effects reported here and had never connected my recent arthritis-like joint pain with my migraine treatments. I’m glad to have run across this discussion, and I will be including this angle in my discussions with my doctors.
I’m wondering how common it is to use both medications, and how concerned I should be about increased risk of side effects from using both. I’m now thinking about backing off from using both and seeing how I do with only one or the other. I’m leaning toward pausing the Ajovy and trying Nurtec every-other-day by itself and seeing how I do.
I’m very surprised to read here that people are reporting ongoing side effects after discontinuing these monoclonals. I’m curious what the mechanism could be, and what the frequency of these reports may be.
Overall, I’m excited to have these new tools in my cabinet and I will have to pay more attention to how these therapies are evaluated as time goes on.
I am one that has ongoing joint pain from 5 doses of Nurtec. With each dose I took the joint pain became worse. I finally linked it to the Nurtec. But the effects are long term for me. I’m still having the same joint pain and stiffness and am coming up on one year. I am seeing a rheumatologist who now thinks it is PMR. I think it is as well. Triggered by the Nurtec. CGRP inhibitors cross over the HPA axis and can suppress cortisol. I think that is what happened. I hope it goes away with time. PMR can last years. Or lifetime. I wish I never tried the Nurtec. I regret it. I want my life back and living with joint pain daily stinks. The only relief is prednisone which has unpleasant long term side effects. My advice is that if you are experiencing joint pain at all I would stop all CGRP medicines. I wouldn’t wish this on my worst enemy.
Yes this has been seen with the monoclonals but not so much due to the pills (gepants)……..as usual the formal trials failed to pick this up as a side effect….L.Robbins
I have had a non stop 24 7 head pain for 32 years. Several years ago I was diagnosed with NDPH. I have tried countless remedies none have worked yet. My neurologist has recommended Erenumab injections. In my research I have not found anyone with NDPH that has had any positive results. Do you know of anyone using Emenumab for NDPH with any positive results? Mine is the refractory type. Any info would be helpful.
I have tried Aimovig. Ajovy, and Emalgity. Unfortunately, no improvement. I didn’t notice any side effects within some slight weight gain with Emalgity.
However, I was put on Vyepti. The day of the infusion I suffered a severe headache. They seem to have increased and more frequently more severe. Is this even possible. I don’t understand this. I am reaching for steroid packs. Could us really make migraines worse? Why?
Too nice and well written article, much useful and beneficial. Keep posting the valued content like this !
Everything You Need to Know About Calluses and Corns
I wonder if more doctors should be prescribing Nurtec or other oral CGRPs rather than the monthly shots, due to many of these side effects and the very long half-life of this class of medication. I refused any of the shots and chose Nurtec instead and have greatly decreased incidence and severity of my 25+ years of migraine. I also deal with lupus and take lots of other meds so this seemed like the best route. Hopefully my new insurance will continue to cover it in 2022 (another major challenge for migraine sufferers).
I was on Emgality and then Vyepti. The Vyepti caused bad side effects including joint pain, delayed gastric emptying and nausea, and substantial hair thinning.
My doctor and I decided we should discontinue the Vyepti due to these bad side effects. My last Vyepti infusion was at the end of August. My GI symptoms and joint pain have resolved, but my hair is still falling out. Is this normal?
My doctor prescribed Nurtec which I haven’t started taking yet since my insurance just approved it. Will Nurtec also be likely to cause hair thinning?
what can be done to reverse the CGRP negative effects ? I have all
The same side effects as others. Hair loss, joint pain,extreme fatigue , constipation, raynauds , heart murmur, celiac , thyroid cyst. Can CGRP be administered to help improve immune system?
I wish there was an answer to this. I wonder if Amgen is researching this.
Dr Robbins, I have seen and my daughter has experienced that after a period of time taking the injectable CGRP they wear off. This has happened twice.
Question: have you seen success where the person rotates back after a period of time and it is successful again?
Yes that can happen or switch to an oral gepant. Nurtec or Quilipta. Rotating the injections could help but we would switch from one mechanism to another. Aimovig is different than the other 3
Dr. Robbins. Thank you for bringing the side effects to the attention of physicians and to the many patients that are searching for answers with severe side effects as I myself am. I am still suffering with severe joint pain and swelling 6 months after stopping Nurtec. After reading many comments about the side effects from CGRP inhibitors, my question to you is what can be done to reverse the CGRP negative effects ? I fear this is permanent. Our doctors don’t know what to do as they, as you say, they look at medicine insert and it only states nausea as side effect. Obviously this is not true as you have brought out the many other side effects occurring. What many of us with negative side effects are searching for is an answer. How do we get this stuff out of our bodies?
“… it limits our ability to prescribe 70mg every 2 weeks for those who stopped responding at the two week mark each month. That prescribing was off-label, and I’m not sure that even worked…”
It did work, and is exactly what I had to do since 140 wore off about a week before my next dose was due and 70 was even worse. 70 every 2 weeks was the magic bullet that worked wonders for me.
in response to joint pain from emgality and also from Nurtec: we have seen this definitely from Emgality and the other injections(monoclonal antibodies), but not so much at all from Nurtec or Ubrelvy; we will have to wait and see if there is a connection to Ubrelvy or Nurtec….
If Nurtec is a CGRP like emgality than itis it possible then Nurtec is causing joint pain and inflammation? Is there something that will stop the reaction? My GP suggested it was from the Nurtec and said it could be a Type IV hypersensitivity which affects Tcells and immune system. Is there something to stop this reaction. He did not know.
Thanks for this article it is well described about the problem and would be helpful for individuals who are suffering with the same.
thanks……I use the monoclonals but as somewhat a last resort, due to the AEs
It is possible that Emgality triggered it, or that it was a coincidence; we need further studies on this of course……CGRP is very important in many organ systems, and we are blocking it without really knowing the consequences…..
Emgality completely took away my migraines which I have suffered from all my life at the rate of over 50% of the time. (I’m 55 yrs). Shortly after beginning this medication, I started having Reynauds and my fingers began swelling. After being on Emgality for a year, I received a diagnosis of systemic sclerosis (scleroderma). It took me another 9 months to realize the Emgality might be inducing the illness. I discontinued Emgality about 5 months ago. I still haven’t gotten a migraine (or even a headache). Yes, that part sounds wonderful, but having systemic sclerosis is much worse.(I now have lung fibrosis in addition to other health issues). I pray I have a chance for a reversal of this illness if the Emgality effects can be reversed. I can’t believe the drug is still affecting me after 5 months of not taking it. Either it is still in my body, or the effects are permanent. I hope to be kept in mind and contacted for any unpdated information. Thank you
I started Ajovy two months ago and haven’t had a single migraine since. But around the same time I started the injections I started getting on and off severe lower back pain. Pt isn’t really working and I don’t know what to do. Could it be from the Ajovy?
It is possible the low back pain could be related, but that would be a very unusual side effect….and low back pain is ubiquitous, we were not meant to walk around on only 2 feet…
I was put on Aimovig (140) and Nurtec in January and I am having life changing results. 37 years worth of migraines and other headaches, including Occipital Neuralgia and Trigeminal facial pain and headaches. What I thought of as typical migraines were only occurring periodically. Most of my pain and headaches were coming from my trigeminal nerve with pain along the side of my nose and cheek but also deep into my head, somewhat triggering my vagus nerve (I believe). I had terrible back of the head, neck and shoulder pain as well. These included migraine like symptoms as well, nausea, sensitivity to light, sound, smells, etc.
I also have a variety of other medical conditions and was diagnosed with Central Sensitization Syndrome as was mentioned in the above interview. I had tried countless meds of all the kinds mentioned as well as Botox, Cranial Manipulation, and the Dr sticking a long Q-Tip dipped in lidocaine up my nose during an attack. Nothing has ever helped me. Imitrex only helped on one type of headache and not all the others I had and I had to give it up as it was causing a rebound effect.
Finally, after all this time, and living hell, I have something that actually works. I am getting 75-90%, maybe even 95%, reduction in pain and symptoms. I am able to greatly reduce a pain medication I’ve been on for 20+ years. On top of this, I have been able to stop taking a bile acid sequesterant medication (Colestipol) that was helping control bile acid diarrhea. While some people have constipation, now I have somewhat normal digestion. I’m wondering if my diarrhea could have been caused by excess CGRP.
I don’t really know how to put to words how amazing this has been for me. I never expected such good results and I really never expected to have my digestion improve. It’s very mind-blowing. My fingers are crossed for continued success. For anyone with multiple medical issues, and long term migraines/headaches, I hope that this interview doesn’t discourage you from trying these meds. I think I’m at the right place in my life, and mental health, to have hope again. It’s been a long road and I am so grateful for these drugs.
How long does it take for my body to go back to “normal” after stopping Ajovy?
Is there a way to safely get Emgality out of your body if you are experiencing sever side effects from it?
no, unfortunately it takes a long long time…up to 4 or 5 months actually….but symptoms diminish over time….
I’ve had severe joint paint and severe leg pain and swelling from Emgality for almost 2 years after taking only the first loading dose of Emgality. No relief in sight and all doctors/specialists are stumped. I cannot sit or stand for more than one hour before pain becomes unbearable. I spend most of my time lying down to prevent pain. This has caused strain on my back from lying in different positions in bed for hours at a time. I’ll never do any migraine injections again.
I’m desperately looking for a way to counteract this medicine as well. I did have a few weeks relief with steroids but searching for answers too.
I started Nurtec in March. I woke up with joint pain in the thumb joint of both my hands. It became worse and then it added my hip and neck joints. I didn’t relate it right away to the Nurtec. I got the Moderna vaccine and got a migraine and was taking Nurtec several times throughout the week following vaccine. Each time the joint pain was worse. It was so bad I couldn’t touch my hands. That’s when I thought it has to be from Nurtec. It was the only thing new. The joint pain started prior to the vaccine so wasn’t the vaccine. I stopped the Nurtec but have been struggling with the joint pain and inflammation ever since. I went to rheumatoid doctor. They put me on prednisone which helps tremendously. But as soon as I try to wean off prednisone it returns. All tests for RA are negative. The only tests positive are inflammatory tests which go to normal while on prednisone. I think this is a reactive arthritis reaction to the Nurtec.
It is more likely your Covid vaccination that has caused this inflammation and not Nurtec. Many diseases are popping up in people from the vaccinations.
I’m having the same problom I don’t know what to do
I have not had the vaccines and had inflammation issues
So a year in and waning results with Emgality, the only choice would be to switch to Amiovig? It was Heaven at first; migraines since a child after TBI. There’s a great deal of life I either missed out on or failed to find joy in. I’ve been more alert,more active, more alive in the past yr than ever. Even with the noted efficacy decline, so far, it’s still better.
So no one has tried a vacation from it and gone back? Is there any risk in doing so, or is that yet another unknown? If only that headaches wull return, that’s already happened, so I’d be willing to try. I am leary of Amiovig based on SE, as I seem sensitive to a lot of meds. On the other hand, a neuro put me on paroxitine decades ago. It obviously didn’t work,but attempts to stop using it have been unsuccessful to disastrous, so it seems I’m stuck with it.
I am selfish – after decades of barely living, I’ve had a pretty terrific year. I don’t want to give it up.
I’ve been on Nurtec for over a year. My hair has and is falling out like crazy. I’m down to 25 percent of my hair.
I’ve ruled out everything. Intensive blood work, dermatologist, scalp treatments, vitamins, acupuncture you name it.
I’ve been researching the heck out of everything. I’m down to Nurtec. It’s the only thing left on my cause list. I’ve stopped taking it. How long does it take to be out of your system? I’m super hydrating to help flush it and hoping the handfulls of hair in the shower stop.
My Neuro wants to replace it with Ubrelvy which is another CGRP. I’m not going to take it and will try to find another rescue. Too bad as Nurtec worked really well for me. I refuse to lose all of my hair
I’m so glad you’re not going to take another one. They won’t admit what the problem is.
Has there been any further conclusive research on possible long-term effects since this article was published? I had severe GI symptoms after my first Emgality loading dose so did not continue. Migraines are becoming more frequent now, so I am debating whether to try Ajovy. Would rather not go through the GI issues again though.
Greetings, I am fortunate to read this before going on any of the above. Yesterday, I had a Telemedicine appt. with a surgeon from Johns Hopkins. I was referred to see if a Release Surgery would be prudent for me as nothing has worked for Bilateral-Occipital Neuralgia. I have FM, Hashimoto’s, Sjogren’s, probably stroke and IBI, OA to name a few of the other bigger issues. I no longer suffer from migraines. I found my triggers and no longer hormonal either. I do have tension variety and FM tender scalp points all over my head and neck. I am 67 years old and had a severe bicycle accident at age 30 and whiplashes (several). The one that broke the camel’s back was when I was stopped at a stoplight with my head greatly turned left as that was the direction of my turn. A woman ‘tapped’ me from behind. That was 1996 and my life was changed and not in a good way. After going through the comments and teaching (answered questions from the interview), I cannot fathom why (with my history) this JH doctor recommends trying Aimovig or Amgality. The usual side effects are what I already deal with me and the ‘less likely to respond’ section describes my life. Please advise.
That’s really surprising and interesting because I’ve had migraines since I was 7 ( I’m 57 now) & like you I also have Hashimoto’s, Sjogren’s, & Fibromyalgia & I also have psoriatic arthritis & small fiber neuropathy. emgality has helped me & ubrelvy helps a lot. neither Aimovig nor Nurtec worked for me
Thanks for this! Two questions:
1. Are there any recent updates on this information, particularly side effects? I need something to share with my doctor. I’ll use this, but something more current with new numbers would be even better.
2. Is there any way to counter the effects of the cgrp antagonists? I’m still suffering from cognitive issues, joint pain and GI issues almost two years later. It would be great to attack the root of the problem.
I took Emgality for several months with a decrease in migraines, but developed a rash, severe hypertension, hair loss,severe exhaustion/fatigue, weight gain and auditory symptoms-I heard voices and sounds that weren’t there. I’m an RN and was told constipation was the only side effect. I wonder if the Covid vaccine make up is related. Should I take it?
I worry about the mRNA vaccine as well. Until I can get a real answer (and given I can’t even get a real answer from my docs about my side effects I think that’s going to be a while) I’m leaning to the AstraZeneca or J&J.
I had so-so results on Aimovig but major constipation. Switched to Ajovy 18 months ago and life has never been better. I take it every 28 days. I haven’t experienced any side effects and feel like I have a life again. I do worry about long term effects so I regularly read your articles and others. Mine is $5 per month and has been the entire time through a pharmacy program I didn’t even ask to join…if you’re having trouble paying for it, ask the doc and the pharmacy for help. There are programs out there
I am thinking about a suit against the company that makes Ajovy.
Constant headaches 24/7 since I took it.
I feel like I am in a living hell of pain.
Same here with Emgality !
Jill and Dahlia – have you stopped taking the meds and the symptoms persist?
I’ve been on Emgality for about 18 months. It’s been a life-changer for migraines. I haven’t even filled my Imitrex in months. Nearly zero migraine. Unfortunately, I’ve had new onset hypertension. I’ve always had low blood pressure but since starting this Emgality, it’s taking two meds to control it. I’ve also gained 20 pounds with no other change to diet or exercise. I’m torn whether to discontinue the Emgality to see if my weight comes off and blood pressure stabilizes. I don’t miss my migraines.
Unfortunately, one cannot have a lawsuit against a drug company because one gets bad side effects from a drug
So I have undifferentiated connective tissue disease with a lean more towards lupus. I’ve been using Ajovy for 6 months and it absolutely works wonders for my migraines; however, I have developed a worsening flare reaction and feel that soon I will have to discontinue. My injection sites are now so swollen, red and itchy. On top of the large wheal (we’re talking 6 inches wide and 6inches tall which then will spread out over days to be like a foot wide) has blisters and is very hot. Definitely headed more towards a systemic reaction in time. I’ve been continuing to use despite this reaction because dang it- it works. I’m on prednisone and I pop a Benadryl. However, the past two months I’ve noticed that the Ajovy is causing me to have lupus flares. Intense joint pain, fatigue, malar rash, fever, headache (not migraine, but lupus headache), right eye pain (I possibly have SICCA syndrome and that eye gets dry and painful with flares) so increased swallowing difficulty too. I know some meds can cause medication induced lupus, but can medications make lupus worse? I’m on Plaquenil, prednisone and flornef so I’m kind of covered pretty decently for my lupus. Anyway, I think more studies on people with autoimmune disease is in order, after all, it is believe that migraines are autoimmune in nature. Autoimmune disease likes to bring friends. Trust me I know since I have a few. ? anyway, I will probable discontinue the medication after I talk to my neurologist and rheumatologist because I’m pretty sure it’s making my lupus worse. I can’t afford to have flares. I’ve just recovered from pericarditis and pleurisy. All the valves in my heart are leaky and I’m only 33. I want to grow old with my husband and lupus is killing me.
My pain intensified so much on Aimovig. My blood pressure has been out of control too. I wish I knew how to fix it because it really does seem exacerbate connective tissue disease.
Dr Robbins, i wish i had found this website last year! I was prescribed aimovig after having severe headaches triggered with traumatic brain injury/ whiplash and then more triggered with menstrual cycle. After no headache meds worked my neurologist suggested aimovig since didn’t want to take long term meds. I only took one shot and after 2 weeks of no headache I ended up with severe depression, anxiety, fatigue to the point that I couldn’t come out of bed. I thought i was going to loose my mind.I had to go to the ER to do iv supplement for low calcium. I had hx of hypocalcemia with hypthyroidism for years but never experienced depression/anxiety/OCD in my life and i strongly feel that when aimovig was given it messed up my calcium level and had some effect on my brain to trigger psychiatric symptoms that i never had. It has been over a year but i still feel those mood issues are not completely gone and will have few days off and on. I don’t have anymore headaches except around hormonal changes.
I really wonder if any info on calcium level with aimovig and when it should completely go away. What is the treatment for mood symptoms triggered by aimovig.
And let me tell u i am myself a physician /psychiatrist and never knew I could have these symptoms when given a headache medication. Appreciate your response.
I’d love to get some advice on how to address the cognitive issues as well. Anxiety, depression, brain fog and memory issues since I first took Aimovig almost 2 years ago, and it’s never really cleared up, though I stopped taking it after the third injection. What can be done to fix it?
I have been on Aimovig for 12 months and have had a 50% improvement but stopped 4 months ago due to cost and constipation and hair loss !
My migraines are back to 14 a month and that’s not counting headaches on top , so feeling very down !
I am worried about blocking CGRP as I am 64 yrs old and have stroke and heart attacks in our family !
What advice do you have for me as I don’t know what is best ? Thank you ? Heather
The CGRP mAbs carry certain risks; unlike Botox, which is very safe. The Ajovy and Emgality are much less likely to cause constipation than Aimovig; but the other side effects remain about the same, in my opinion. Hair loss is one side effect. If you look at the top of our Homepage, I have a number of articles on this under the CGRP header. Certainly cardiac and stroke is a concern, but only time will tell how much of a concern. L.Robbins
Hello! I was justbprescribed Aimovig and am reading that it has been causing hair loss. As someone who already suffers from hair loss would it be a recommendation to stay away from it? I get intense Cervicogenic headaches that present as migraines(c4/c5 – c5/c6 discs abutted to spinal cord) and am looking desperately for a relief however I really would like to not lose all of my hair ?. Any advice will be appreciated.
YES THESE CAN CAUSE HAIR LOSS BUT IT IS NOT COMMON; and when a drug causes hair loss, almost always when we withdraw the drug the hair returns and is ok……..
Try going to an upper cervical spine specialist. I was 8 degrees off. I have not gotten another cervicogenic headache.
Good morning, I have been on Aimovig for 2 years now and have had great success. I have had side effects but I’ll take them over migraines any day. However I am curious if regular labs were done a few days after injecting Aimovig? I have regular lab work and 4 days post the doctor said my lab work was so out of sorts he didn’t know how I was standing. I retested a week later and everything was fine but I found it pretty interesting.
This is exactly why I’m scared to take it myself. I could be writing your post Heather. Chronic daily headaches migraines also. The price is too much for me to handle w/o stopping food
Hello, I have been on Emgality for 9 cycles and it has truly changed my life. I also take Topamax and Inderal. I am 50 yes old and have been treated for migraines since I was nine and have been in medication for most of my life. However I have started to have tremendous hair loss, much more than I have ever experienced with topiramate. Will this side effect go away in time, or is the only recourse to remove the medication?
Unfortunately one of the side effects not mentioned was affordability and not being covered by insurance such as Medicare. The pharmaceutical companies don’t really care if you die, because if you can’t afford it, you have no value to them at all. Their public persona of finding ways to improve your quality of life, is nothing but hyperbole and BS; it’s more about gouging the patient and lining their pockets, they wouldn’t care if you died in a ditch because you could not afford $8,400 a year for one medication. Anyway, you forgot to mention THAT side effect…
We desperately need price controls on drugs in the U.S. In context, the CGRP meds are cheaper than the others in the monoclonal antibody group(Humira, for instance, for arthritis is $3000 plus per month); that is not to say they are cheap by any means; we need controls….
Th pharmaceutical companies offer assistance for people that can not afford these drugs. Ask your doctor or google their websites.
You cannot get help from the pharmacy companies if you are on Medicare. It is not legal.
That has changed. Inquire about this by reading patient assistance guidelines on the pharmaceutical company’s website. I have Medicare and receive patient assistance for Qulipta and Ubrelvy. I also qualified for Emgality.
If you’re prescribed Emgality, submit an application for financial assistance to LILLY CARES FOUNDATION. I have Medicare A and B but not D and was within their income limits, and was approved.
Assistance is prohibited for Medicare patients and anyone on a government health plan, state, City, and federal. Some assistance was offered by one company but you had to spend over $2000 yearly first regardless of low income.
Dr. Ribbons. I was wondering if there is research going on regarding CGRP’s and Polymyalgia Rheumatica. After almost 2 years of joint pain and stiffness following taking Nurtec I have now been diagnosed with PMR. I just had double hip replacement surgery and the surgeon said it was not from osteoarthritis but PMR and synovitis. I tested negative for all forms of autoimmune including RA, seronegative RA, psoriatic, Lukas, gout etc. He explained that it’s not clear what causes PMR. Age and maybe adrenal insufficiency as prednisone works immediately as it did with me. I wonder if suppressing the HPA axis with the CGRP triggered it for me. I am also 59 so may be producing less cortisone naturally because if my age. It would be helpful if they studied this and linked it to PMR as I never had this prior to Nurtec and it came on overnight and was worse with each dose I took. I wonder if there is a link and that is older migraine sufferers should avoid CGRP’s because it could trigger PMR. Thanks for your comments.
I have this exact same thing! Exactly to a T…. 55yrs and Synovitis of the knees following very severe inflammation triggered by Aimovig, still have it a year later, and I’ve heard of others with permanent damage. I also have Addisons treated via low dose steroids. This article is so valuable, I knew there were more SE’s than published, the FB forums are FULL of people reporting horrible SE’s… waaay higher than any literature so far.
At age 38 I had left hip go out at 39 my right now 40 it’s my right knee. Dr said Avascular necrosis. Blood flow to the joints has stopped. I’ve been searching far and wide as to why. Just last week I found a subreddit about Emgality side effects. Been on Emgality since 2019. Hair loss high heartrate anxiety depression… never put 2 and 2 together cuz the injection “had no side effects “
Came off Ajovy 3 months ago, still have bad anxiety side effects. Which hormones do I need to get checked? Thanks
Well said Jon!
If you stop taking Qulipta, does your joint pain go away or am I stuck with it forever?