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Phantom99

Nurtec medication?

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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? 

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@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

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@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 

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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. 

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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. 

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Nurtec is an abortive, Emgality and others are preventives.  Nurtec's materials specifically say "Not for prevention."

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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...
 

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Thank you for keeping us informed.  Hoping you'll have some good (or great) news.

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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.

 

 

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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".

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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. 

 

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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.

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