Phantom99 Posted July 6, 2020 Share Posted July 6, 2020 My doctor suggested to give this new medication a try. He said it is mainly for Migraines but it could help for Cluster headache as well. Also, has anyone tried Aimovig medication? Quote Link to comment Share on other sites More sharing options...
kat_92 Posted July 6, 2020 Share Posted July 6, 2020 @Phantom99 im so hesitant when they say “it helps with migraines and possibly clusters too”. Clusters behave so differently and I’m always scared any disturbance from an unknown medication will make it worse. I don’t know. I would pass on it kat 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted July 6, 2020 Share Posted July 6, 2020 @Phantom99 Aimovig is one of the CGRP class of medications that have been developed over the past several years.....from the reports I've seen it's overall results are much like other cluster pharma meds....works for some and not for others I'm sad to say. Emgality is another one of the CGRP meds and actually has a dosing protocol specifically aimed at clusters...again, doesn't seem to work for all but from what I've seen, it has a higher efficacy than Aimovig. Dallas Denny Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 6, 2020 Share Posted July 6, 2020 Phantom, just a note that if there's a topic you're wondering about, you can search for it using the search bar at the top right of each page. I'm not saying that you shouldn't ask questions, but sometimes you can get a lot from a search, too. Quote Link to comment Share on other sites More sharing options...
Dr. Julie Posted July 7, 2020 Share Posted July 7, 2020 10 hours ago, Phantom99 said: My doctor suggested to give this new medication a try. He said it is mainly for Migraines but it could help for Cluster headache as well. Also, has anyone tried Aimovig medication? While I would normally say that drugs don't often crossover well migraine-to-cluster, in this case Nurtec is a CGRP receptor antagonist to the same effect as Emgality. They have a different mechanism to achieve the same purpose. Nurtec is a binds/blocks the receptor while Emgality uses antibodies to sequester the signaling molecule so it never triggers the receptor. I think it remains to be seen how well it works and whether one approach is better than the other but several people here could give you feedback. Since Nurtec is blocker I expect you'd have to take it more often (it will turn over faster) and Emgality is monoclonal antibody which usually lasts ~3-4 weeks, depending on target. So if you want to try it, maybe look at costs/insurance when you pick. If you tried Emgality with no success then I'd have low expectation from Nurtec, sorry. Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 7, 2020 Share Posted July 7, 2020 Nurtec is an abortive, Emgality and others are preventives. Nurtec's materials specifically say "Not for prevention." Quote Link to comment Share on other sites More sharing options...
signals61 Posted July 30, 2020 Share Posted July 30, 2020 My doctor also suggested I try Nurtec at my annual last week. I picked up the script today and I've been doing as much research as I can get my hands on. Like @kat_92, I'm suspicious when it targets migraines but doesn't specifically mention clusters. I reviewed their web site and couldn't find a single mention of cluster treatment. Also, literature says it can take anywhere from 1-2 hours for pain relief, so if I'm using it as an abortive, I don't know that that helps much. That said, it says it prevents them for 48 hours after. That could be good. They seem real proud that it reduces the biggest problems associated with migraines: Noise Sensitivity, Light Sensitivity and Nausea. Great, but like most of you, I don't have those symptoms with my cluster attacks. @CHfatherI found one line of discussion that indicated the maker is filing with the FDA to have it listed as a preventive, and that some headache specialists are already prescribing it that way even though the current FDA guidance specifically says its not. My pharmacist freaked out when I filled the script - I also refilled my sumatriptan at the same time and the pharmacist was emphatic that I not take them both. I honestly had not intended to, but if Nurtec doesn't work, I want my good friend standing by and ready. But I did get curious, so I looked up the drug interactions on drug.com and it said none exist. OK, nice to know, but I think if the situation arises, I'll avoid taking the chance. I do have oxygen tanks, but find they are only useful for mild attacks. In any case, that will be my backup if Nurtec doesn't work tonight. I'll wait a couple days before going back to the triptans. The only thing I'm puzzled over - if Nurtec works for 48 hours, why would I wait for my 1:30 AM attack? Why not take it now? Decision made - I'm going to start a dose tonight before bed - I'll post my experience in a couple days... 2 Quote Link to comment Share on other sites More sharing options...
CHfather Posted July 30, 2020 Share Posted July 30, 2020 Thank you for keeping us informed. Hoping you'll have some good (or great) news. Quote Link to comment Share on other sites More sharing options...
signals61 Posted July 30, 2020 Share Posted July 30, 2020 Early review - Took the Nurtec last night - I was just starting an attack, but it wasn't in full bloom. As you all may know, it's a dissolving pill, so you just put it under the tongue and let it melt. It has a light mint flavor, not unpleasant.Fully dissolves in about a minute. True to the literature, within an hour the pain was gone. So not as fast acting as the triptan injection, but it did seem to be effective and without the heavy chest sensation I get from the triptan. The only side effect I may have had - I had a hard time falling asleep. Hard to tell if that's just the stress of the day or the meds. (Actually one of the the things I like about triptans, they make it easy to fall back asleep.) For me, the beast predictably comes two or three times a night, in my sleep. First attack is usually like clockwork at 1:30 AM. Random attacks happen during the day or late evening. So the big test was, would I make it through the night without the beast knocking me out of bed? Mostly, yes. I woke once, but not from pain. I did have a mild attack when I woke on schedule in the morning. I settled that one with 5 minutes on the O2 tank. Again, according to literature, if you do get an attack, the intensity should be reduced, so this is also consistent. So - next thing to look at - according to the literature, I should get through 48 hours with no attacks. We'll see after tonight. Stay tuned. 1 Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted July 30, 2020 Share Posted July 30, 2020 It will be interesting to hear reports of how this is working for folks. First I will be curious how it is covered by insurance since there is no data on clusters. It will also be interesting from a cost effective standpoint if taking daily or a couple times a month is similar to monthly injections. Be aware this drug will stick around later in the presence of calcium channel blockers like verapamil and prednisone may accelerate metabolism. Experience still gathers on the CGRP class of medications for use in clusters. I suspicion the mechanism of action the drug takes will make a difference. If nothing else is helpful and you have access I vote "hell yeah, give it a try". 2 Quote Link to comment Share on other sites More sharing options...
signals61 Posted July 31, 2020 Share Posted July 31, 2020 All good questions @Pebblesthecorgi What I can tell you right now regarding cost/insurance: My doc and I really didn't consider it at this point. The first script wound up being free with a doctor provided coupon. The pharmacy listed the retail price before the coupon at $1003.99. GoodRx says I can get it as low as $864 (retail without coupon or insurance). A package contains 8 pills, and that's supposed to last 30 days. Maybe for the average migraine sufferer, sure. But for us CH folks, at best, that's 2 weeks (assuming it holds true to the data, 1 pill every 48 hours). If my insurance doesn't cover it, at least partially, I won't be getting a refill. At that price point I can't justify the cost! If it accelerates my metabolism, I'm ok with that for the moment. I don't take verapamil as it did nothing for me and I already take atenolol (beta-blocker) for blood pressure. The beta-blocker increases weight gain, so an increased metabolism might offset that - it might also cause my BP to rise (I'll keep an eye on that). And that could explain the difficulty I had getting to sleep last night. I did ask my doctor about Emgality, the once a month injection. He didn't seem enthusiastic, but said he'd write it if this one didn't work out. (I suspect he had a sales guy in from BioHaven pushing Nurtec, but no one from Eli Lilly has been around to make such offers for Emgality. In any case, Emgality lists on GoodRx for $559 with a coupon. Still only going that route if insurance covers most of it. 1 Quote Link to comment Share on other sites More sharing options...
signals61 Posted July 31, 2020 Share Posted July 31, 2020 Personal experience update: Nurtec was effective for the first 24 hours or so, but didn't make the 48 hour goal. Last night, within the 48 hour window of initial medication, the first visit of the beast came at the usual 1:30 AM time. I think it was not as intense as usual. Pain only, no rhinorrhea, conjunctival injection, or lacrimation, and I spent 10 minutes on the tank before heading back to bed. Normally I'll get three visits during the night, but I'm on the tail end of my cycle right now, so I can't use the reduced attack count as a guide. So maybe it still had some kick left in it? Not sure. Tonight I'm going to wait for the beast before medicating, just to see how fast it actually works. I probably won't update again unless something radical is noticed. I'll keep using it for the next couple weeks till its gone. Bottom line for me is, if insurance doesn't cover this it's a moot point. Sumatriptan is faster , cheaper and much more predictable, oxygen is a good backup. Considering the retail cost, I'm disappointed in my results so far. 1 Quote Link to comment Share on other sites More sharing options...
Jenn B Posted January 22, 2021 Share Posted January 22, 2021 I'd be curious to hear how people's experience with Nurtec is going given that this thread was from 6 months ago. I was recently diagnosed with "difficult to diagnose" headaches. I have long thought I suffered from CHs, but my symptoms aren't quite textbook. I found this forum and just last week had an appointment with one of the headache doctors recommended here (Dr. Mauskop at NY Headache Center). He said that while uncommon, it's not unheard of that I don't fall neatly into one category. I have some symptoms of cluster but also some symptoms of migraine. He said the good news is that there are only a few medications that are effective for both. He suggested Nurtec to replace the Imitrex I've been using, which really knocks me on my ass and leaves me with some unpleasant side effects. Unfortunately, I don't have any drug coverage with my health plan. This leaves me unable to use the drug manufacturer's discount card. I also make too much money for financial assistance ($36K is their cutoff). The drug goes for about $900 for 8 pills. Dr. Mauskop is sending me a couple of samples to try so I can see if it works before I even consider forking over that kind of money. The "good" news is I only get about 20 migraines a year, in about 5-6 cycles that last up to a week at a time (the headaches come on around the same time each day but often skip a day or two in each cycle). So I could probably get away with 8 pills for the whole year, which may be worth it if it really stops it in its tracks. Curious to know what others' experience is. Thanks! Jenn Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 23, 2021 Share Posted January 23, 2021 (edited) 3 hours ago, Jenn B said: He suggested Nurtec to replace the Imitrex I've been using, which really knocks me on my ass and leaves me with some unpleasant side effects. I don't have anything to say about Nurtec, except to mention that just yesterday a person posted that s/he was recently prescribed Nurtec: https://clusterbusters.org/forums/topic/7465-newbie-to-group-advice/?tab=comments#comment-71856 I looked at goodrx.com, where there are often free coupons for lower prices for things you can get at standard pharmacies, but the lowest price there was $886.62. I did want to mention that a possible antidote to being knocked on one's ass by Imitrex (and to most of the other side effects) is to use less of it each time. Most people only need about 2mg to stop an attack, and the injector holds 6mg. Many people disassemble the autoinjector so they can give themselves smaller doses. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Some folks can get it in vials with syringes so they can measure out their own doses. Some do fine with a triptan nasal spray, which has fewer side effects. Do you have oxygen? Are you doing the D3 regimen? Edited January 23, 2021 by CHfather 3 Quote Link to comment Share on other sites More sharing options...
Niki Posted February 9, 2021 Share Posted February 9, 2021 Emgality has given me my life back. I tried Aimovig with no success. The Emgality every 3 weeks has given me a few days a week with no migraines, which is unheard of for me. Prior to Emgality, I tried everything else in the market with no success. Give Emgality a shot, regardless of some negate reviews. Each person is very different in what works for them. Quote Link to comment Share on other sites More sharing options...
CHMatt Posted August 1, 2022 Share Posted August 1, 2022 My doc had me try Nurtec for some of the residual bad shadows I get during bad cycles, and it actually gets me almost 24 hours without a cluster in a cycle where I was getting 5+ attacks a night. I does not last me the promised 48 hours, but right now I'm pretty happy with 24 hours with a cluster. Niki - thrilled Emgality helped you! Emgality actually seemed to make my already bad cycle worse - more frequent and (shockingly) more intense. Granted, correlation doesn't mean causation, but not willing to try it again given how long it stays in your system. Quote Link to comment Share on other sites More sharing options...
mit12 Posted August 2, 2022 Share Posted August 2, 2022 I am taking Nurtec every other day as a preventative. It has really slowed down the migraine hits and the clusters have been stopped so far. 3 Quote Link to comment Share on other sites More sharing options...
CHMatt Posted August 11, 2022 Share Posted August 11, 2022 My 24 hours without a cluster on Nurtec was a one-time thing and hasn't been repeatable. It does help me with persistent shadows or migrainesce headaches between attacks, though. Quote Link to comment Share on other sites More sharing options...
Allison Posted January 13, 2023 Share Posted January 13, 2023 Going to try nurtec as soon as insurance approves. Having a terrible cluster cycle that keeps ramping up. Headache every 45 mins all night long. On verapamil and just boosted pred to 24 mg bid for few days. Have oxygen which aborts but so many headaches in a row that no sleep and pain. Hesitant to do emgality as have reacted poorly to drugs in past and that is long acting injection. Triptans make me feel so bad have not used in past years. Will post about nurtec. Fingers crossed Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 13, 2023 Share Posted January 13, 2023 Wow Allison, so sorry to hear you're being slammed like that! Will be eager to learn of your results with nurtec. Fingers crossed big time here too for it to do the trick for you. Hit us up for discussion of additional (often very effective) non pharmaceutical options to complement your nicely non pharmaceutical O2 if needed, and please continue to stay safe - avoiding prolonged prednisone use. 2 Quote Link to comment Share on other sites More sharing options...
mit12 Posted January 13, 2023 Share Posted January 13, 2023 Follow up. I have been on Nurtec going on 6 months 1 every other day as a preventative. Migraines are about 1/2 as before the Nurtec and only had 1 bout with Clusters. So far I am happy with the results. 4 Quote Link to comment Share on other sites More sharing options...
Allison Posted January 18, 2023 Share Posted January 18, 2023 On 1/13/2023 at 4:58 PM, Bejeeber said: Wow Allison, so sorry to hear you're being slammed like that! Will be eager to learn of your results with nurtec. Fingers crossed big time here too for it to do the trick for you. Hit us up for discussion of additional (often very effective) non pharmaceutical options to complement your nicely non pharmaceutical O2 if needed, and please continue to stay safe - avoiding prolonged prednisone use. Thanks,insurance denied nurtec and ubrelvy. Bought ubrelvy bc at wits end. Tsking off label starting sat pm. Taken every night. No headaches, slept every night since starting. Beast still there,have that ghoust feeling but no actual headaches. Want off pred but afraid to taper too fast. Had to cut hours at work to part time bc cycle was so intense. This is first time since Christmas i have not had a headache night. Was getting btw 4 to 8 attacks all night long. Going to try pushing insurance for nurtec. Mayo clinic doing phasr 2 trials but i do not qualify bc of current drug use. At this point i will drain my savings for this drug. Afraid to try emgality bc lasts so long and have had several drug reactions in the past Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 18, 2023 Share Posted January 18, 2023 5 hours ago, Allison said: At this point i will drain my savings for this drug. I'm familiar (from many years ago) with that draining of savings for CH meds routine. Well OK with me back then it was more like "put 'em on the credit card and quickly rack up some astonishing debt", but I'm sure lots of us are all too familiar with the desperate motivation behind such moves. Hoping for best results for you with the pushing of insurance for Nurtec. Meantime the less expensive and more natural preventives that you'll find legions of us swear by as most effective, plus most sustainable (personal health-wise) are busting and the D3 regimen, which can be complementary side by side treatments, or pursued separately. If you haven't looked into it yet, busting info is found at the blue 'New Users Please Read Here First' at top of page ^^^^^^. 2 Quote Link to comment Share on other sites More sharing options...
Allison Posted January 21, 2023 Share Posted January 21, 2023 On 1/13/2023 at 5:56 AM, Allison said: Going to try nurtec as soon as insurance approves. Having a terrible cluster cycle that keeps ramping up. Headache every 45 mins all night long. On verapamil and just boosted pred to 24 mg bid for few days. Have oxygen which aborts but so many headaches in a row that no sleep and pain. Hesitant to do emgality as have reacted poorly to drugs in past and that is long acting injection. Triptans make me feel so bad have not used in past years. Will post about nurtec. Fingers crossed Quote Link to comment Share on other sites More sharing options...
Allison Posted January 22, 2023 Share Posted January 22, 2023 On 7/29/2020 at 8:17 PM, signals61 said: My doctor also suggested I try Nurtec at my annual last week. I picked up the script today and I've been doing as much research as I can get my hands on. Like @kat_92, I'm suspicious when it targets migraines but doesn't specifically mention clusters. I reviewed their web site and couldn't find a single mention of cluster treatment. Also, literature says it can take anywhere from 1-2 hours for pain relief, so if I'm using it as an abortive, I don't know that that helps much. That said, it says it prevents them for 48 hours after. That could be good. They seem real proud that it reduces the biggest problems associated with migraines: Noise Sensitivity, Light Sensitivity and Nausea. Great, but like most of you, I don't have those symptoms with my cluster attacks. @CHfatherI found one line of discussion that indicated the maker is filing with the FDA to have it listed as a preventive, and that some headache specialists are already prescribing it that way even though the current FDA guidance specifically says its not. My pharmacist freaked out when I filled the script - I also refilled my sumatriptan at the same time and the pharmacist was emphatic that I not take them both. I honestly had not intended to, but if Nurtec doesn't work, I want my good friend standing by and ready. But I did get curious, so I looked up the drug interactions on drug.com and it said none exist. OK, nice to know, but I think if the situation arises, I'll avoid taking the chance. I do have oxygen tanks, but find they are only useful for mild attacks. In any case, that will be my backup if Nurtec doesn't work tonight. I'll wait a couple days before going back to the triptans. The only thing I'm puzzled over - if Nurtec works for 48 hours, why would I wait for my 1:30 AM attack? Why not take it now? Decision made - I'm going to start a dose tonight before bed - I'll post my experience in a couple days... Hi, trying nurtec. Afraid of emgality, once its in its in. 2 nights in a row no headache. On pred and verapamil, decreasing pred. Took nurtec near bedtime Quote Link to comment Share on other sites More sharing options...
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