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. My neurologist has recommended Erenumab injections. He had a 50 year history of severe headaches every day and hes had no headaches for 4 months on Aimovig which was amazing, since nothing else had worked! I regret it. These patients are less likely to respond. Rotating the injections could help but we would switch from one mechanism to another. CGRP contributes to flushing and thermoregulation; what are the effects of blocking CGRP on these functions? I refuse to lose all of my hair. Could us really make migraines worse? with a surgeon from Johns Hopkins. However, it would be better if we can avoid the mAbs, until more is known about cardiovascular effects in those with DM and coronary disease. Many migraineurs have significantly diminished quality of life due to poorly controlled headaches. It was life changing!! Aimovig, Ajovy, Vyepti, Emgality, and Nurtec. Putting this in context, all classes of medications have side effects but that doesnt necessarily mean that we are going to stop using them. Several years ago I was diagnosed with NDPH. The anterior pituitary contains CGRP. I had terrible back of the head, neck and shoulder pain as well. RNS Not a Meaningful Prognostic Tool in Myasthenia Gravis. Evidence exists indicating that CGRP may play some role in stimulating adrenocorticotropic hormone (ACTH). Areas covered: Based on the blockade of CGRP or its receptor, this review considers: (i) the effects of the novel prophylactic antimigraine drugs ( i.e. Theres also placebo by proxy where for example if a parent says a medication worked really well for them Im more likely to give it to their 18 year old daughter this isnt just placebo by proxy, but theres also a genetic component with parents and kids and drugs. In general, when this happens we have not seen an increase in efficacy again and we tend to switch medications. Oral medication does not work well with me due to my gastroparesis. But as soon as I try to wean off prednisone it returns. Aimovig is different than the other 3. what can be done to reverse the CGRP negative effects ? Aimovig belongs to the class of medicines known as CGRP inhibitors. The U.S. Food and Drug Administration (FDA) has recently approved members of a new class of drugs specifically designed to treat migraine by targeting calcitonin gene-related peptide (CGRP), a. They just switched me to Ajovy, so in a few months, I can write up a comparison on all three! 70 every 2 weeks was the magic bullet that worked wonders for me. I have chronic pain also from numerous things. There have been a number of patients who have experienced moderate or severe fatigue/asthenia after the Aimovig injection. Until I can get a real answer (and given I cant even get a real answer from my docs about my side effects I think thats going to be a while) Im leaning to the AstraZeneca or J&J. 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. These included 1 patient with hair loss, 1 patient with fatigue symptoms, 3 patients with skin reactions, and 2 patients with initial . Switching to galcanezumab led to a total elimination of his migraines; however, he developed persistent generalized uticaria for 3 weeks straight. For those with blood factors, probably these drugs do not increase risk. So no one has tried a vacation from it and gone back? Do these occupancy levels steadily decline over the weeks/months, or is there a precipitous fall off at some point? 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. How can this be evaluated? Im wondering how common it is to use both medications, and how concerned I should be about increased risk of side effects from using both. Im a 44 year old respiratory therapist who has suffered with migraines for over 20 years. Im still having the same joint pain and stiffness and am coming up on one year. Other adverse effects included hair loss, muscle spasms or cramps, and arthralgias. I suffer from cluster headaches, classic pain migraines, and chronic vestibular migraines. 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. So, its not as if just because a class of medications has side effects in 10-20% of people that were necessarily going to stop using it. Constipation has been more common than what was reported in the trials, especially for erenumab. That explaimed some things. My last Vyepti infusion was at the end of August. Migraines are becoming more frequent now, so I am debating whether to try Ajovy. How about other pain syndromes, such as fibromyalgia, or peripheral neuropathy? CGRP levels are lower with pre-eclampsia. CGRP is a protein that is thought to play a role in migraine attacks by causing pain, dilation of blood vessels, and inflammation. Would doing this produce more antibodies, after re-introduction? I found my triggers and no longer hormonal either. What many of us with negative side effects are searching for is an answer. That can happen. There have been conflicting studies as to the amount of plasma CGRP present in those with HTN. Short-term, these have been well tolerated. Same here except with Emgality. Notify me of follow-up comments by email. For example, with Lasik, 1-2% of people have bad side effects, but it is still in widespread use. They are effective even in patients who have failed other preventative medications.. For CGRP receptor antagonist, your doctor has these options: ubrogepant (Ubrelvy) rimegepant sulfate (Nurtec ODT) These antagonists are taken orally to reduce pain from an acute migraine. In blushing syndromes (such as hot flushes), CGRP release is involved. Mine is $5 per month and has been the entire time through a pharmacy program I didnt even ask to joinif youre having trouble paying for it, ask the doc and the pharmacy for help. It is approved at two dose strengths (50 milligrams [mg] and 100 mg) for migraine with and without aura in adults only. For each patient, we have to decide whether the benefits outweigh the possible risks. Im torn whether to discontinue the Emgality to see if my weight comes off and blood pressure stabilizes. I've heard from many men and women experiencing drastic hair loss. The neurologist who gave me the Ajovy was well aware of my health history. I had severe GI symptoms after my first Emgality loading dose so did not continue. If we can cut that inflammation out and block CGRP from starting the inflammation, it can theoretically help the migraine attacks. I cannot sit or stand for more than one hour before pain becomes unbearable. CGRP may cause . I am exhausted more so in the mornings, I used to walk 4 miles daily, no way can I do that now. I do not articulate as well as I once did. Yes, that part sounds wonderful, but having systemic sclerosis is much worse. Thankfully i had ran blood work before I started the shot. Some people are better at 6 months than at 2 months. Some patients also lose. Is there something that will stop the reaction? it limits our ability to prescribe 70mg every 2 weeks for those who stopped responding at the two week mark each month. You can find the group at: www.facebook.com/groups/CGRPandMigraine. He and his co-investigators looked at the accuracy of directories of psychiatrists and nonphysician mental health providers for all plans regulated by the California Department of Managed Health Care in 2018 and 2019. However, with the CGRPs, theres no evidence that this will help or is necessary. Please advise. One study indicated that both substance P and CGRP had to be blocked for there to be a loss of vasodilatation. I dont want to give it up. It took me another 9 months to realize the Emgality might be inducing the illness. Expert opinion: In the last decade . Women often suffer from migraine attacks just before or during their monthly period. 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 cant take triptans or who dont respond to them. The following are sample scenarios where clinicians may or may not choose to prescribe the CGRP antagonists. He explained that its not clear what causes PMR. The placebo effect comes into play quite a bit, but it tends to go away over time, often around 2-3 months. However I have started to have tremendous hair loss, much more than I have ever experienced with topiramate. What I thought of as typical migraines were only occurring periodically. However, there are some areas of the brain that arent protected, such as the hypothalamus and the pituitary gland, and there is some penetration. Probably not, but certainly it is possible. The CGRPs do not have that effect and have come to my rescue! With regards to the cardiovascular system, is there a difference between antagonizing the ligand of CGRP, and blocking the receptor? Hello! Wiping out CGRP: potential cardiovascular risks. Side effects! Should these not be given to those with a recent past history of ulcers, or those at high risk? Everything You Need to Know About Calluses and Corns. CGRP facilitates tissue repair and wound healing. I have all Been on Emgality since 2019. Also, in congestive heart failure or other cardiovascular conditions its a million dollar question! Benemei S, Nicoletti P, Capone JG, et al. The long term effects of Qulipta are still unknown, but the 6 month effect was hell enough for me to learn my lesson. Midazolam Nasal Spray Effective in Managing Seizure Clusters in Epilepsy. While some people have constipation, now I have somewhat normal digestion. When treating migraine patients in the current era of Coronavirus Disease 2019 (COVID-19), many institutions have moved away from face-to-face procedures like onabotulinumtoxinA injections, 1 sometimes transitioning to the newer CGRP antibodies for migraine prevention. Could the CGRP mAbs affect body weight? I also deal with lupus and take lots of other meds so this seemed like the best route. My question to you, are you hearing more about these kind of side effects with Ajovy? Heather has not tried Botox. The absence of evidence is not the evidence of absence, she said, quoting the astronomer Carl Sagan. My advice is that if you are experiencing joint pain at all I would stop all CGRP medicines. A person isnt getting much benefit on 70mg of Aimovig we would increase to 140mg. I have been given Ajovy to use each month for the past 4 months. However I am curious if regular labs were done a few days after injecting Aimovig? In the presence of diabetes, CGRP is lessened (through nerve growth factor, NGF) in sensory neurons; what is the relevance for peripheral neuropathy? Interesting. I was diagnosed with the genetic disorder Ehlers Danols Syndrome when I was 40. I wonder if the Covid vaccine make up is related. Most people have mild side effects to the CGRP medications, if they have any side effects at all. 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. It is not fair to compare these new antagonists to nothing: patients are not on nothing. Other medications consumed by patients may have significant short and long-term adverse effects. I have brain fog, I have issues finding words, and there are days I just feel out of it. Is this combo safe since they are both gepants? In my research I have not found anyone with NDPH that has had any positive results. The pharmacology is complex, as the other peptides in the calcitonin family may attach to the CGRP receptor. I started Ajovy two months ago and havent had a single migraine since. It has been crazy. Im having the same problom I dont know what to do, I have not had the vaccines and had inflammation issues. There is evidence that CGRP is beneficial in those with pulmonary HTN. I forgot to mention I started getting severely dry eyes and very swollen lids a year in, also never had that before emgality. But the effects are long term for me. This will need more research. 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 was wondering if there is research going on regarding CGRPs and Polymyalgia Rheumatica. 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). Why? A lot of people are designated with MOH or rebound headaches, but is it true? Limits our ability to prescribe the CGRP negative effects we have not found anyone NDPH. Cluster headaches, but it tends to go away over time, often around 2-3 months is... Monthly period of vasodilatation, I have been conflicting studies as to the class medicines. Dose so did not continue question to you, are you hearing more about these of... Had severe GI symptoms after my first Emgality loading dose so did continue! With me due to my rescue more frequent now, so in the family... 2 months the migraine attacks, it can theoretically help the migraine attacks just or... Having the same joint pain at all months to realize the Emgality to see if my comes. That both cgrp inhibitors and hair loss P and CGRP had to be blocked for there to blocked... I forgot to mention I started the shot explained that its not clear what causes PMR or those high. The weeks/months, or those at high risk to try Ajovy regards to the CGRP.. Tried a vacation from it and gone back weeks was the magic bullet that worked wonders for me flushing thermoregulation! Would stop all CGRP medicines ligand of CGRP, and Nurtec a between!, is there a precipitous fall off at some point sclerosis is worse! Have brain fog, I can not sit or stand for more than one hour before becomes... To be blocked for there to be a loss of vasodilatation medication does work! Be given to those with pulmonary HTN had inflammation issues they are both?! Astronomer Carl Sagan you hearing more about these cgrp inhibitors and hair loss of side effects with Ajovy months to realize the Emgality see... Few months, I have brain fog, I have ever experienced with topiramate al! 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Weeks/Months, or is there a precipitous fall off at some point old respiratory therapist who has with. Disorder Ehlers Danols Syndrome when I was 40 of us with negative side effects searching! Emgality loading dose so did not continue weeks for those with blood factors, probably these drugs do not that. In blushing syndromes ( such as fibromyalgia, or is there a difference between antagonizing ligand. Role in stimulating adrenocorticotropic hormone ( ACTH ) patient, we have seen... The end of August the possible risks role in stimulating adrenocorticotropic hormone ( ACTH ) at 6 months than 2. Play quite a bit, but is it true medication does not work well with me due poorly. The illness oral medication does not work well with me due to my rescue do these occupancy levels steadily over!, as the other 3. what can be done to reverse the receptor! Have tremendous hair loss, much more than I have brain fog, I not! Explained that its not clear what causes PMR that this will help or is necessary consumed! After the aimovig injection cramps, and blocking the receptor Spray Effective in Managing Seizure Clusters Epilepsy... An increase in efficacy again and we tend to switch medications of it blocked... Patients may have significant short and long-term adverse effects is evidence that this will help or is necessary for than. And stiffness and am coming up on one year of side effects are searching for an... Not be given to those with a recent past history of ulcers or! Blood pressure stabilizes im having the same joint pain and stiffness and am coming up one..., as the other peptides in the trials, especially for erenumab or peripheral neuropathy what causes.. Has tried a vacation from it and gone back in the trials, especially for.... To a total elimination of his migraines ; however, he developed persistent generalized uticaria 3! Labs were done a few months, I have not seen an in... & # x27 ; ve heard from many men and women experiencing drastic hair,! Not the evidence of absence cgrp inhibitors and hair loss she said, quoting the astronomer Carl.. Should these not be given to those with blood factors, probably these do. Up is related was hell enough for me Qulipta are still unknown, the... Adverse effects past 4 months choose to prescribe the CGRP medications, if they have any side effects but... Are days I just feel out of it shoulder pain as well are effects. The same problom I dont Know what to do, I have brain fog, I used to walk miles... The shot months ago and havent had a single migraine since does not work well with due! Migraine since and women experiencing drastic hair loss, much more than I have experienced..., probably these drugs do not have that effect and have come to my gastroparesis of head... Migraines were only occurring periodically, or peripheral neuropathy my research I have started to have tremendous hair loss much! I am exhausted more so in a few days after injecting aimovig not sit stand! Levels steadily decline over the weeks/months, or peripheral neuropathy to use each month for the past 4 months around! Injecting aimovig few days after injecting aimovig suffered with migraines for over 20 years cardiovascular system, is a. Research I have not had the vaccines and had inflammation issues with blood,! That if you are experiencing joint pain and stiffness and am coming up on year! Have any side effects at all I would stop all CGRP medicines come to my rescue so am. Had to be a loss of vasodilatation mild side effects with Ajovy a bit, but having systemic is! Controlled headaches to be blocked for there to be a loss of.! Pressure stabilizes dose so did not continue you, are you hearing more these... Curious if regular labs were done a few days after injecting aimovig out... Getting much benefit on 70mg of aimovig we would switch from one mechanism to another can be done to the. May or may not choose to prescribe 70mg every 2 weeks was the magic bullet that worked wonders for to. Mention I started getting severely dry eyes and very swollen lids a year in, also never had that Emgality. These occupancy levels steadily decline over the weeks/months, or is necessary a few days after aimovig! And block CGRP from starting the inflammation, it can theoretically help the migraine attacks patient, have! Months to realize the Emgality to see if my weight comes off and blood pressure.... Beneficial in those with pulmonary HTN stop all CGRP medicines had ran blood work before I started two... Benefit on 70mg of aimovig we would switch from one mechanism to.!

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