Migraine - Aimovig and Cardiology or Pulmonology

Posted by msb18 @msb18, Jun 14, 2019

Hi – I'm being sent to a cardiologist and a pulmonologist. Since my final Aimovig 140mg dose in January 2019 (I'm still having injection site pain and muscle spasms this long after last dose), I become very short of breath easily. My GP ran bloodwork to rule out blood clots and heart failure. Results were good. However I'm EXTREMELY short of breath (having to lean against bathroom counter while I brush my teeth), become lightheaded and woozy. CGRP is the primary vasodilator and essential to the cardiovascular system. Additionally, you can develop antibodies to Aimovig which would potentially cause immune system problems.

I have never, ever been winded like this. Never in my life. Aimovig is the only change in more than a year – no change to other meds, diet, weight. The doctor watched my blood oxygen level fall from 98% to 94% with brisk walking inside the office and my heart was pounding and I had trouble catching my breath. He's not ruling out exertional asthma but, he's concerned that Aimovig may be causing problems with my cardiovascular system. I try not to worry but, I bent down to put my dog's leash on this morning and instantly became winded. I've been hoping that AIMOVIG will leave my system now that I'm 154 days since last dose and that my breathing will return to normal.

I understand to some extent what CGRP antagonists can do now that I've read so many research reports and have seen concerns expressed by specialists. It's really scary to go through this. I do have an albuterol inhaler (to try, to see if it helps) but, I'm not noticing much improvement.

Any input from other CGRP antagonist patients, especially Aimovig would help. Has anyone on Aimovig developed shortness of breath, become easily winded?

Interested in more discussions like this? Go to the Brain & Nervous System group.

@lisalucier

Hi, @msb18 – wondering when you will be having the calcium score test you mentioned? Will the doctor put you on something else for the migraines, since the erenumab (Aimovig) was potentially prompting your shortness of breath?

@hedjhog – You mentioned a traumatic brain injury (TBI), so I wanted to invite you to also participate in this discussion on that topic https://connect.mayoclinic.org/discussion/adult-life-after-a-tbi.

You said you had some of the shortness of breath, as well, hedjhog, but that you are reluctant to change anything at this point. Did your doctor by chance have any comments on your experiencing this symptom while taking the erenumab (Aimovig)?

@russy – since you switched from treatment with erenumab (Aimovig) to galcanezumab (Emgality), how are your symptoms?

@quazar – due to your experience with some racing heart with erenumab (Aimovig) injections, are you going to continue with the injections, or ask to be changed to another medication?

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Re: Aimovig injections – since i have NDPH, not migraines, my neurologist had to fight to get approval for me to try it at all. Because of the cost, the Powers That Be didn't want to give it to me without the "correct" diagnosis. Ultimately, since nothing else has worked, I was approved for max 3 doses. The 3rd dose was a double dose. Since there were no positive effects, we didn't push for any further doses. My neurologist said if it was going to work at all, it would have worked by/with the third double dose. But my pain levels were unchanged. I recall that another drug I tried had similar heart racing side effects. I think it was Venlafaxine, but that one also had a bunch of other side effects that made it impossible to try long term. It also provided no relief or change. I've pretty much exhausted the list of treatments – even my long term use of CBD tinctures and capsules has not provided any noticeable benefit re: NDPH (plenty of other interesting benefits, as well as learning that I have an adverse reaction to THC). My sister still suggests electroconvulsive therapy to "reset" my brain. I never can tell for sure whether she's kidding (sisters, you know LOL), but with as often as she's suggested it, I think she's serious. I'll have to ask my neurologist about that.

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@quazar

Re: Aimovig injections – since i have NDPH, not migraines, my neurologist had to fight to get approval for me to try it at all. Because of the cost, the Powers That Be didn't want to give it to me without the "correct" diagnosis. Ultimately, since nothing else has worked, I was approved for max 3 doses. The 3rd dose was a double dose. Since there were no positive effects, we didn't push for any further doses. My neurologist said if it was going to work at all, it would have worked by/with the third double dose. But my pain levels were unchanged. I recall that another drug I tried had similar heart racing side effects. I think it was Venlafaxine, but that one also had a bunch of other side effects that made it impossible to try long term. It also provided no relief or change. I've pretty much exhausted the list of treatments – even my long term use of CBD tinctures and capsules has not provided any noticeable benefit re: NDPH (plenty of other interesting benefits, as well as learning that I have an adverse reaction to THC). My sister still suggests electroconvulsive therapy to "reset" my brain. I never can tell for sure whether she's kidding (sisters, you know LOL), but with as often as she's suggested it, I think she's serious. I'll have to ask my neurologist about that.

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@quazar There is a headache device sometimes called the
'migraine pacemaker' – it's a neurostimulator. It appears to be useful with certain headaches like cluster headaches. Has your doctor discussed this device with you? The device is implanted most often in the chest (not deep) with leads going up to the temples and forehead. Some patients have had excellent results. It's a same-day procedure. I looked into it for my chronic intractable migraines but, stats show it works better for other types of chronic headaches.

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I stumbled upon these comments researching breathlessness and Aimovig, Nutec etc. Oh my – absolutely terrible breathlessness. I really think the FDA should be be advised. The breathlessness occurred within 48 hours of the first injection. Told my primary I thought the injection was the cause but he was very concerned and I was put through a big battery of cardiology tests costing thousands. (All negative) Recently my neurologist prescribed Nurtec and said it "was different." It's not – I took Nurtec twice and I'm experiencing the same symptoms, and it takes months for the breathlessness to abate.. So frustrating.

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I am new to this site, but started having headaches Feb 2021 that occurred 5-7 days a week, This went on for months. I was tried on the "old standard" meds b/c my insurance would not cover Amovig until I had three "failures" with older treatments. So, tried on triptan which helped stop the HA, but there is a limit of 10 doses per month. Then tried on amlodipine low dose. It helped some, but developed one of the side effects of peripheral edema which resulted in developing Achilles tendinitis, so I had to stop jogging. Then I was tried on topiramate (topomax). I told my newly found neurologist this might be a risky med given my other med conditions of depression and generalized anxiety disorder. His only reply was "you want to get rid of your headaches don't you?" I took it for 7 days and my Migraines increased in frequency and intensity almost immediately. I stopped that med and looked for another neurologist. Finally found a new nurse practitioner who was with a neurology group and specialized in headache related problems for that group.. B/C of 3 med failures and a MRI, I was now approved by insurance for Amovig 70mg sc q28days. My headaches immediately stopped. I was really thankful. The after 3 months in Jan of 2022, my asthma suddenly flared with severe shortness of breath. Over the next 3 months, I was tried on a Prednisone "burst" 2 times with no relief. So found a pulmonology group and was assigned to a nurse practitioner in April 2022. After a series of CT scans and MRI's , she recommened Xolaira . I was hesitant after reading the side effect profile. So went to the Mayo clinic in June 2022 for a 2nd opinion. The senior associate consultant saw me for 5 minutes after the fellow resident completed his exam. One of their conclusions was that this was NOT an asthma related exacerbation. However in the progress notes the fellow resident recommended DULERA be started (a monoclonal antibody similar of Xolara). I never got to have a follow up consult with the "fellow" b/c of a gaff in communication. The clerk left a message at my home land line 400 miles for Mayo. So upon arriving home, realized I had missed my follow up review with the "fellow". He tried to call me a couple times , but I was out running chores. So, I have been essentially be left in limbo. In the meantime, I talked with me wife about where to go from here. We were lost. I researched Amovig and noted that the half life was 28 days and steady state was reached anywhere from 3 to 5 half lives. That matched perfectly with my Amovig. With no where to turn and no guidance, I decided the Lord sent me to Mayo for some reason and that was to find the one bread crumb I needed. So, I did not give myself the June 7th dose of Amovig. Since then my asthma symptoms have improved greatly. Not perfect , but it's only been 10 days. But I am able to return to jogging with no ill effects. Additionally my asthma seems quieted down significantly. Some wheezing intermittently, but nothing like 10 days ago. I am still using Levalbuterol MDI prn before jogging and the Levalbuterol high flow nebulizer twice a day along with Dulera 250 mcg/5mcg 2 puffs twice a day. But my asthma has improved by 30-50%, and even a little greater at times. Since the half life of Amovig is 28 days, it will take another 18 days before 50% of the drug is out of my system. We'll see what happens, but I am hopeful. I am terribly disappointed in the physician follow up at Mayo. Really sad. The gauntlet seems impenetrable. Can't even get an appt with the fellow when I return July 12,13 for a few more tests. However, staff folks were great. Courteous, helpful, polite, and very knowledgeable regarding their jobs (lung tests, blood draws, CT, clerical folks, etc.). So we,ll see how things go. Hopefully, I can avoid Xolara and continue to improve asthma wise. . HA's are starting to return, so not sure how that will play out.. That's my story so far.

REPLY
@fox1

I am new to this site, but started having headaches Feb 2021 that occurred 5-7 days a week, This went on for months. I was tried on the "old standard" meds b/c my insurance would not cover Amovig until I had three "failures" with older treatments. So, tried on triptan which helped stop the HA, but there is a limit of 10 doses per month. Then tried on amlodipine low dose. It helped some, but developed one of the side effects of peripheral edema which resulted in developing Achilles tendinitis, so I had to stop jogging. Then I was tried on topiramate (topomax). I told my newly found neurologist this might be a risky med given my other med conditions of depression and generalized anxiety disorder. His only reply was "you want to get rid of your headaches don't you?" I took it for 7 days and my Migraines increased in frequency and intensity almost immediately. I stopped that med and looked for another neurologist. Finally found a new nurse practitioner who was with a neurology group and specialized in headache related problems for that group.. B/C of 3 med failures and a MRI, I was now approved by insurance for Amovig 70mg sc q28days. My headaches immediately stopped. I was really thankful. The after 3 months in Jan of 2022, my asthma suddenly flared with severe shortness of breath. Over the next 3 months, I was tried on a Prednisone "burst" 2 times with no relief. So found a pulmonology group and was assigned to a nurse practitioner in April 2022. After a series of CT scans and MRI's , she recommened Xolaira . I was hesitant after reading the side effect profile. So went to the Mayo clinic in June 2022 for a 2nd opinion. The senior associate consultant saw me for 5 minutes after the fellow resident completed his exam. One of their conclusions was that this was NOT an asthma related exacerbation. However in the progress notes the fellow resident recommended DULERA be started (a monoclonal antibody similar of Xolara). I never got to have a follow up consult with the "fellow" b/c of a gaff in communication. The clerk left a message at my home land line 400 miles for Mayo. So upon arriving home, realized I had missed my follow up review with the "fellow". He tried to call me a couple times , but I was out running chores. So, I have been essentially be left in limbo. In the meantime, I talked with me wife about where to go from here. We were lost. I researched Amovig and noted that the half life was 28 days and steady state was reached anywhere from 3 to 5 half lives. That matched perfectly with my Amovig. With no where to turn and no guidance, I decided the Lord sent me to Mayo for some reason and that was to find the one bread crumb I needed. So, I did not give myself the June 7th dose of Amovig. Since then my asthma symptoms have improved greatly. Not perfect , but it's only been 10 days. But I am able to return to jogging with no ill effects. Additionally my asthma seems quieted down significantly. Some wheezing intermittently, but nothing like 10 days ago. I am still using Levalbuterol MDI prn before jogging and the Levalbuterol high flow nebulizer twice a day along with Dulera 250 mcg/5mcg 2 puffs twice a day. But my asthma has improved by 30-50%, and even a little greater at times. Since the half life of Amovig is 28 days, it will take another 18 days before 50% of the drug is out of my system. We'll see what happens, but I am hopeful. I am terribly disappointed in the physician follow up at Mayo. Really sad. The gauntlet seems impenetrable. Can't even get an appt with the fellow when I return July 12,13 for a few more tests. However, staff folks were great. Courteous, helpful, polite, and very knowledgeable regarding their jobs (lung tests, blood draws, CT, clerical folks, etc.). So we,ll see how things go. Hopefully, I can avoid Xolara and continue to improve asthma wise. . HA's are starting to return, so not sure how that will play out.. That's my story so far.

Jump to this post

Hello @fox1 and welcome to Mayo Clinic Connect. I want to start off by recommending you reach out to the Office of Patient Experience to resolve the communication issue you had with regard to scheduling your follow up appointment. Staff are available to discuss comments or concerns you may have regarding your medical care at Mayo Clinic.

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

How are you feeling now with the absence of Amovig?

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@fox1

I am new to this site, but started having headaches Feb 2021 that occurred 5-7 days a week, This went on for months. I was tried on the "old standard" meds b/c my insurance would not cover Amovig until I had three "failures" with older treatments. So, tried on triptan which helped stop the HA, but there is a limit of 10 doses per month. Then tried on amlodipine low dose. It helped some, but developed one of the side effects of peripheral edema which resulted in developing Achilles tendinitis, so I had to stop jogging. Then I was tried on topiramate (topomax). I told my newly found neurologist this might be a risky med given my other med conditions of depression and generalized anxiety disorder. His only reply was "you want to get rid of your headaches don't you?" I took it for 7 days and my Migraines increased in frequency and intensity almost immediately. I stopped that med and looked for another neurologist. Finally found a new nurse practitioner who was with a neurology group and specialized in headache related problems for that group.. B/C of 3 med failures and a MRI, I was now approved by insurance for Amovig 70mg sc q28days. My headaches immediately stopped. I was really thankful. The after 3 months in Jan of 2022, my asthma suddenly flared with severe shortness of breath. Over the next 3 months, I was tried on a Prednisone "burst" 2 times with no relief. So found a pulmonology group and was assigned to a nurse practitioner in April 2022. After a series of CT scans and MRI's , she recommened Xolaira . I was hesitant after reading the side effect profile. So went to the Mayo clinic in June 2022 for a 2nd opinion. The senior associate consultant saw me for 5 minutes after the fellow resident completed his exam. One of their conclusions was that this was NOT an asthma related exacerbation. However in the progress notes the fellow resident recommended DULERA be started (a monoclonal antibody similar of Xolara). I never got to have a follow up consult with the "fellow" b/c of a gaff in communication. The clerk left a message at my home land line 400 miles for Mayo. So upon arriving home, realized I had missed my follow up review with the "fellow". He tried to call me a couple times , but I was out running chores. So, I have been essentially be left in limbo. In the meantime, I talked with me wife about where to go from here. We were lost. I researched Amovig and noted that the half life was 28 days and steady state was reached anywhere from 3 to 5 half lives. That matched perfectly with my Amovig. With no where to turn and no guidance, I decided the Lord sent me to Mayo for some reason and that was to find the one bread crumb I needed. So, I did not give myself the June 7th dose of Amovig. Since then my asthma symptoms have improved greatly. Not perfect , but it's only been 10 days. But I am able to return to jogging with no ill effects. Additionally my asthma seems quieted down significantly. Some wheezing intermittently, but nothing like 10 days ago. I am still using Levalbuterol MDI prn before jogging and the Levalbuterol high flow nebulizer twice a day along with Dulera 250 mcg/5mcg 2 puffs twice a day. But my asthma has improved by 30-50%, and even a little greater at times. Since the half life of Amovig is 28 days, it will take another 18 days before 50% of the drug is out of my system. We'll see what happens, but I am hopeful. I am terribly disappointed in the physician follow up at Mayo. Really sad. The gauntlet seems impenetrable. Can't even get an appt with the fellow when I return July 12,13 for a few more tests. However, staff folks were great. Courteous, helpful, polite, and very knowledgeable regarding their jobs (lung tests, blood draws, CT, clerical folks, etc.). So we,ll see how things go. Hopefully, I can avoid Xolara and continue to improve asthma wise. . HA's are starting to return, so not sure how that will play out.. That's my story so far.

Jump to this post

This is very interesting information from fox1. I tried Aimovig for 2 doses which was 2 months. it did improve my daily migraines, however, it all but stopped my gut from working. Was lucky to poop after 4 days at a time. I thought I would adjust so I did the 2nd month – same results with gut shutdown. I'd rather have headaches every day. Triptans work for me and thankfully my neurologist is trusting me with them. I have Sumatriptan 100mg which I cut into 4 pieces so I take 25mg at a time – this gives 36 doses instead of the 9 that the insurance allows. I also have Rizatriptan which works best for me, Naratriptan is another that doesn't work so well so I use it for the 4 am trouble, Frovatriptan is another that takes forever to work so I use it during the night mostly so that I am settled and not moving around a lot. The triptan that is a life-saver and my last resort when the HA gets out of control is Sumatriptan 6mg INJECTABLE that comes in an auto-injector. It is a miracle drug for me. It works within 15 min. I don't use it unless I just am at my wits end or the pain is more than I can stand while I would have to wait until another of the triptans helped. Migraines are horrible and on occasion I am unable to distinguish them from tension since I get a really stiff neck – I use Tylenol if it turns out to be tension, sometimes ibuprofen but not often since I get a terrible stomach ache if I use it more than 2 days in a row. It is a 24 hr/day job just to manage this migraine stuff.

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How do I copy this to show my Dr?

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@amandajro

Hello @fox1 and welcome to Mayo Clinic Connect. I want to start off by recommending you reach out to the Office of Patient Experience to resolve the communication issue you had with regard to scheduling your follow up appointment. Staff are available to discuss comments or concerns you may have regarding your medical care at Mayo Clinic.

Office of Patient Experience
Mayo Building, lobby level
8 a.m. to 5 p.m., Monday–Friday
507-284-4988

How are you feeling now with the absence of Amovig?

Jump to this post

My symptoms are beginning to improve. (i.e. less shortness of breath and wheezing). It's been 20 days since my last dose of Amovig. Half life is 28 days, so we'll see where I go from here symptom wise. But noticeable improvement.

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@feb

How do I copy this to show my Dr?

Jump to this post

Sorry Kathy. I'm 72 yo and just get by with the new technology systems. I was able to highlight the story I was interested in and then press Control and "P" key on keyboard to take me to my printer and got a printout. Unfortunately the copy was in pretty small letters, so hard to focus on the report, but not impossible. That may work for you. Fox1

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@donnacarp

This is very interesting information from fox1. I tried Aimovig for 2 doses which was 2 months. it did improve my daily migraines, however, it all but stopped my gut from working. Was lucky to poop after 4 days at a time. I thought I would adjust so I did the 2nd month – same results with gut shutdown. I'd rather have headaches every day. Triptans work for me and thankfully my neurologist is trusting me with them. I have Sumatriptan 100mg which I cut into 4 pieces so I take 25mg at a time – this gives 36 doses instead of the 9 that the insurance allows. I also have Rizatriptan which works best for me, Naratriptan is another that doesn't work so well so I use it for the 4 am trouble, Frovatriptan is another that takes forever to work so I use it during the night mostly so that I am settled and not moving around a lot. The triptan that is a life-saver and my last resort when the HA gets out of control is Sumatriptan 6mg INJECTABLE that comes in an auto-injector. It is a miracle drug for me. It works within 15 min. I don't use it unless I just am at my wits end or the pain is more than I can stand while I would have to wait until another of the triptans helped. Migraines are horrible and on occasion I am unable to distinguish them from tension since I get a really stiff neck – I use Tylenol if it turns out to be tension, sometimes ibuprofen but not often since I get a terrible stomach ache if I use it more than 2 days in a row. It is a 24 hr/day job just to manage this migraine stuff.

Jump to this post

Constipation if the number one reason folks have to stop Amovig. In order for me to continue on this drug, I had to drink 36-48 oz of water every day and also took 300mg of docusate daily.
That was able to get me by regarding constipation issues. However, even with these two changes, my bowel habits noticeably changed probably due to the seemingly decrease in intestinal motility. If you ever decide to restart Amovig, this may be helpful. BUT you must take the docusate separately from all other drugs (at least 1 hr apart) to avoid interaction with other meds (i.e. decreased absorption) . And my daily dose may have been in excess, but that was the necessary dose for me to avoid the constipation issues for the most part. Also 2 fleet enema's over a 6 month period which would get things moving and avoid the possibility of impactation. Fox1

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