You have confirmed to me that my concerns were valid...I took Ajovy for 4 months for chronic vestibular migraine..I had no negative side effects whatsoever and one particularly positive effect in that it 'fixed' my IBS..for the first time in 40 years I have normal bowel movements.....BUT I didn't stay on Ajovy b/c I am 73 and I'm thinking that I now, more than ever, need the vasodilatory effects of CGRP. ......... While the Ajovy did render me VM free 2 additional days a month, giving me 10 VM free days vs 8 VM free days, it was not worth taking the risk that comes with inhibiting CGRP at my age.
Thank you. I was on Emgality for about a year, developed muscle pain and cramps, my PCP thought possibly post COVID myalgia or fibromyalgia, my Neuro took me off the Emgality, and said she had several other patients with the muscle pain on it. Now I’m on Quilipta daily, Nurtec rescue in addition to the Botox I’ve been on for 6 years. Muscle pain has improved to a large degree off the mab.
@@delphiniapickett2934 the benefits outweigh the risks for me. Cgrps are the only medication that have given me any relief from the 8 years of chronic migraine I’ve suffered with and the long list of medications and treatments I’ve tried.
Thank you for voicing these concerns. Exactly as youve said I've been blown off about the anxiety brought on by qulipta. This was the first migraine medication they tried to give me, as well as giving it to me even though I already have GI issues. I'm a young man and have decided that the risk is not worth the reward for me personally. There are a lot of unanswered questions about these blockers.
Another very informative talk! Although my main concern with CGRP-inhibitors is the reported negative effect on bone health (I have osteoporosis), before seeing your videos I was not aware of the digestive issues or the reported hair loss. I have experienced both of these symptoms, but didn't attribute them to taking Ajovy. After seeing a previous video of yours, I followed up with an email regarding the bone loss connection. Thank you for addressing these issues. I look forward to hearing any updates.
Thank you so much your work and trying to get this information out there. I have been suffering with chronic headaches for some time, and I have recently been tried on Nurtec and Emgality. I also happen to be a pharmacist and I find it so frustrating that these drugs haven’t been studied more in depth, and the side effect information is almost nonexistent. I have taken Nurtec on two occasions and had horrible insomnia the first night. The second time, I took it earlier in the morning, and slept better, but it didn’t help my headache. I decided to try the Emgality since it was slightly different (being a mAb) and my insurance had approved it. I started getting a headache within an hour or two after the dose. This was last Monday. I slept ok the first night. Since then, my head has hurt on and off. I only got about 2 mostly pain free days (Wednesday and Thursday). Then the headaches have intensified since then and I took a Maxalt on Saturday and today. The insomnia started more Tuesday night and Wednesday night was the worst. It has gradually improved since then, and I also restarted melatonin Friday night. I have had random anxiety, especially yesterday, that then inexplicably just went away. I think my resting HR has been up slightly the past week or so. My Apple Watch was giving me lots of days with readings in the 50’s, now it’s mainly on the 60’s. Lastly, at least Tuesday through Thursday night, when I was trying to sleep, I would randomly have to take a deep breath. I felt like it was activating some sort of alertness center in my brain, but I don’t know why I needed the deep breaths (maybe anxiety?). Due to some sleep deprivation, I was also exhausted and my head felt weird on Thursday. I see neurology tomorrow and will discuss all of this at my appointment. I do not intend on taking anymore of the these medications or any more in the same family. Since the half life of Emgality is 27 days, I will likely keep dealing with side effects for awhile. 🥴 Thank you again for this video and information. I have read other numerous of various side effects from these medications on Reddit and drugs.com. This is not where I should have to go find side effect information, and I greatly appreciate your efforts.
Thank you Dr Robbins your voice on this topic is much appreciated. Heart disease runs in my family. I have just lost my mum to stroke. She passed her migraine genes on to me. Thinking these are not for me. Botox will be my preference.
FATIGUE! I slept for a solid month after trial on the IV-CGRP. Serious sleeping, not out of bed, dozing or asleep. Tolerating Aimovig, and it helps moderate the migraine pain level, but all the others CGRP's have had this sleeping side effect for me to a greater or lesser degree.
Thank you for this. I was a little concerned once on qulipta and nurtec when i would see frequent rises in my blood pressure and stress levels. Not sure if these will wear off or if i should try another medication. Tried so many already and cgrp were only ones to get rid of my pain
While I agree that we should be cautious in Patients with a theoretical risk profile for CGRP mAB adverse effects, I strongly disagree that research "hasn't looked at that". Especially kidney function and cardiovascular events are, maybe next to real-world efficacy and disease-modification, one of the hot topics around those medications. Another limitation is, that this video does not explore the fact that real-world data show that adverse effects are usually linked to the enteric system (Obstipation being by far the most common). The beta-CGRP peptide and receptors make up the majority of the enteric nervous system's CGRP population. And considering kidney function, a great "side effect" is the high reduction in acute medication intake. So far even 5 year-real-world data studies do not show a high amount of major adverse effects. But as they are a relatively new drug class, we do not have 10-year + data of course. In my opinion expert opinions on theoretical adverse effects should not be ignored, but 5-year-real-world data show an overwhelming benefit (don't forget that Migraine has one of the highest DALY aross all diseases) and good tolerability. Thus, patients should be informed (as always) and high risk individuals frequently screened (a high cv risk profile should always be closely monitored anyways). Muñoz‑Vendrell et al, 2023 conducted an interesting study about safety and tolerabilty with a cohort of Patients with a high cv risk profile: Median age 68 years, 40% dyslipidaemia, 40% hypertension, 8% diabetes, and 6% previous cardiovascular ischaemic disease. A total of 25% of patients presented adverse effects, all of them mild. Headache and medication intake frequencies were signifcantly reduced. My department also has a database of patients usings CGRP mAB. Around 75% did not experience/report side effects so far, 8% Obstipation, 4,5% injection site reactions, 4,5% loss or "thinning" of hair. So far one patient out of >600 reported sharp chest pain. While not ap-specific and without correlation in routine cardiologic check-ups, we explored the theoretical cv-risks with CGRP mAB and during a treatment break she decided to switch to another prophylactic drug class. Less effective in her case but still having a good reduction of burden of disease and she feels saver.
I knew I shouldn't have taken this. Im waiting for an MRI. I should not have taken migraine medication. Im so upset... especially without an official migraine diagnosis
Wow I was told its extremely safe. No interaction etc. Because I stated I'm scared and extremely nervous because im very sensitive to meds. Im also diabetic with ckd. Im never taking this again. Especially when I haven't been diagnosed.
You have confirmed to me that my concerns were valid...I took Ajovy for 4 months for chronic vestibular migraine..I had no negative side effects whatsoever and one particularly positive effect in that it 'fixed' my IBS..for the first time in 40 years I have normal bowel movements.....BUT I didn't stay on Ajovy b/c I am 73 and I'm thinking that I now, more than ever, need the vasodilatory effects of CGRP. ......... While the Ajovy did render me VM free 2 additional days a month, giving me 10 VM free days vs 8 VM free days, it was not worth taking the risk that comes with inhibiting CGRP at my age.
Is the study of migraines and heart issues
Thank you. I was on Emgality for about a year, developed muscle pain and cramps, my PCP thought possibly post COVID myalgia or fibromyalgia, my Neuro took me off the Emgality, and said she had several other patients with the muscle pain on it. Now I’m on Quilipta daily, Nurtec rescue in addition to the Botox I’ve been on for 6 years. Muscle pain has improved to a large degree off the mab.
Might stay off CGRP meds.
@@delphiniapickett2934 the benefits outweigh the risks for me. Cgrps are the only medication that have given me any relief from the 8 years of chronic migraine I’ve suffered with and the long list of medications and treatments I’ve tried.
OMG same happened for me, I'm trying to decide which o want to deal with less.
Thank you for voicing these concerns. Exactly as youve said I've been blown off about the anxiety brought on by qulipta. This was the first migraine medication they tried to give me, as well as giving it to me even though I already have GI issues. I'm a young man and have decided that the risk is not worth the reward for me personally. There are a lot of unanswered questions about these blockers.
Qulipta is a gepant, right? Isn’t that different from a cgrp blocker?
Another very informative talk! Although my main concern with CGRP-inhibitors is the reported negative effect on bone health (I have osteoporosis), before seeing your videos I was not aware of the digestive issues or the reported hair loss. I have experienced both of these symptoms, but didn't attribute them to taking Ajovy. After seeing a previous video of yours, I followed up with an email regarding the bone loss connection. Thank you for addressing these issues. I look forward to hearing any updates.
Yes hair loss. They won't tell you. $$$
Thank you so much your work and trying to get this information out there. I have been suffering with chronic headaches for some time, and I have recently been tried on Nurtec and Emgality. I also happen to be a pharmacist and I find it so frustrating that these drugs haven’t been studied more in depth, and the side effect information is almost nonexistent. I have taken Nurtec on two occasions and had horrible insomnia the first night. The second time, I took it earlier in the morning, and slept better, but it didn’t help my headache. I decided to try the Emgality since it was slightly different (being a mAb) and my insurance had approved it. I started getting a headache within an hour or two after the dose. This was last Monday. I slept ok the first night. Since then, my head has hurt on and off. I only got about 2 mostly pain free days (Wednesday and Thursday). Then the headaches have intensified since then and I took a Maxalt on Saturday and today. The insomnia started more Tuesday night and Wednesday night was the worst. It has gradually improved since then, and I also restarted melatonin Friday night. I have had random anxiety, especially yesterday, that then inexplicably just went away. I think my resting HR has been up slightly the past week or so. My Apple Watch was giving me lots of days with readings in the 50’s, now it’s mainly on the 60’s. Lastly, at least Tuesday through Thursday night, when I was trying to sleep, I would randomly have to take a deep breath. I felt like it was activating some sort of alertness center in my brain, but I don’t know why I needed the deep breaths (maybe anxiety?). Due to some sleep deprivation, I was also exhausted and my head felt weird on Thursday. I see neurology tomorrow and will discuss all of this at my appointment. I do not intend on taking anymore of the these medications or any more in the same family. Since the half life of Emgality is 27 days, I will likely keep dealing with side effects for awhile. 🥴
Thank you again for this video and information. I have read other numerous of various side effects from these medications on Reddit and drugs.com. This is not where I should have to go find side effect information, and I greatly appreciate your efforts.
Thank you Dr Robbins your voice on this topic is much appreciated. Heart disease runs in my family. I have just lost my mum to stroke. She passed her migraine genes on to me. Thinking these are not for me. Botox will be my preference.
Couldn’t they test CGRP levels prior to administering these therapeutics?
I was thinking the same thing!!
FATIGUE! I slept for a solid month after trial on the IV-CGRP. Serious sleeping, not out of bed, dozing or asleep. Tolerating Aimovig, and it helps moderate the migraine pain level, but all the others CGRP's have had this sleeping side effect for me to a greater or lesser degree.
Dont ever go back on it ever
Was this Vyepti that was the IV CGRP that you tried?
Thank you so much for this information…
Thank you for this. I was a little concerned once on qulipta and nurtec when i would see frequent rises in my blood pressure and stress levels. Not sure if these will wear off or if i should try another medication. Tried so many already and cgrp were only ones to get rid of my pain
I thought qulipta was a gepant and different from a cgrp?
So is migraine is untreatable ?
While I agree that we should be cautious in Patients with a theoretical risk profile for CGRP mAB adverse effects, I strongly disagree that research "hasn't looked at that". Especially kidney function and cardiovascular events are, maybe next to real-world efficacy and disease-modification, one of the hot topics around those medications.
Another limitation is, that this video does not explore the fact that real-world data show that adverse effects are usually linked to the enteric system (Obstipation being by far the most common). The beta-CGRP peptide and receptors make up the majority of the enteric nervous system's CGRP population. And considering kidney function, a great "side effect" is the high reduction in acute medication intake.
So far even 5 year-real-world data studies do not show a high amount of major adverse effects. But as they are a relatively new drug class, we do not have 10-year + data of course.
In my opinion expert opinions on theoretical adverse effects should not be ignored, but 5-year-real-world data show an overwhelming benefit (don't forget that Migraine has one of the highest DALY aross all diseases) and good tolerability. Thus, patients should be informed (as always) and high risk individuals frequently screened (a high cv risk profile should always be closely monitored anyways).
Muñoz‑Vendrell et al, 2023 conducted an interesting study about safety and tolerabilty with a cohort of Patients with a high cv risk profile:
Median age 68 years, 40% dyslipidaemia, 40% hypertension, 8% diabetes, and 6% previous cardiovascular ischaemic disease. A total of 25% of patients presented adverse effects, all
of them mild. Headache and medication intake frequencies were signifcantly reduced.
My department also has a database of patients usings CGRP mAB. Around 75% did not experience/report side effects so far, 8% Obstipation, 4,5% injection site reactions, 4,5% loss or "thinning" of hair. So far one patient out of >600 reported sharp chest pain. While not ap-specific and without correlation in routine cardiologic check-ups, we explored the theoretical cv-risks with CGRP mAB and during a treatment break she decided to switch to another prophylactic drug class. Less effective in her case but still having a good reduction of burden of disease and she feels saver.
I ended up with small fiber neuropathy from a loading dose of Emgality...
Thank you
I knew I shouldn't have taken this. Im waiting for an MRI. I should not have taken migraine medication. Im so upset... especially without an official migraine diagnosis
Wow I was told its extremely safe. No interaction etc. Because I stated I'm scared and extremely nervous because im very sensitive to meds. Im also diabetic with ckd. Im never taking this again. Especially when I haven't been diagnosed.
If you are not sure don't do it
Hopefully you didn’t get side effects 🤞
What was the outcome of the MRI?
Shilling for the botox industrial complex 🤔
Botox been good for me
Helpful for many with bad migraines.