Nurtec

[NRGoo]

NURTEC-   MD prescribed for me this relatively new medication which is indicated for migraine headache. He told me he has another CH patient who took a dose a the start of a cluster period, with great success: aborted the cycle. I haven’t tried it, or purchased it yet, it’s very expensive w/ out Insurence. 

Has anybody here used this medicine for CH?   

[CHfather]

NR', if you put the word Nurtec into the search bar at the top right of any page, you'll see what people here have said about it.  No one reported having the success that your doctor's other patient had, for sure. It's important to recognize that mostly you are likely to see disappointments reported here, since people who have success are not particularly likely to come here to report it, so you're not getting the full picture. (In that regard, it's frustrating that some Nurtec threads tail off without closure, since it's impossible to know whether the treatment succeeded or not.)

It's my understanding that Nurtec is an abortive medication to stop individual attacks (migraine attacks, since as you say it isn't an approved CH treatment).  Is that how your doctor prescribed it (take it to stop an attack), or are you supposed to take it regularly as a preventive?  Aside from that patient whose cycle is reported to have ended, as an abortive Nurtec seems to be not nearly as effective oxygen or triptans.    

My goodness, it is expensive!  When you say "without insurance," if that means you have no insurance, that's one thing, but if you do have insurance but it won't cover it because it's not approved for CH, maybe you could try something like Emgality, which works in essentially the same way, on CGRP receptors, and is approved for CH.  If you decide to go ahead with this purchase, you can get it for a little less using a coupon from at goodrx.com.

Can we assume that you are using all the standard CH treatments -- oxygen, D3 regimen, etc?

[Juss]

Lilly Reveals Critical Barriers to Optimal Migraine Care and Insights from Novel Clinical and Patient-Centric Real-World Evidence, Supporting Lilly’s Preventative and Acute Treatment Portfolio at AHS 2021

(Read closely, galcanezymab was the top performer, and the bottom performers were the oral CGRP, at the very bottom-nurtec.

Lilly is the pharmaceutical giant that produces Emgality (galcanezymab), but in all honesty I am too damn lazy to pull and cite well over 10 studies of galcanezymab being the superior choice for CH. For once, a pharmaceutical giant is not toting a bunch of…
 

https://www.centralcharts.com/en/145854-lilly-and-co/news/3195189-lilly-reveals-critical-barriers-to-optimal-migraine-care-and-insights-from-novel-clinical-and-patient-centric-real-world-evidence-supporting-lilly-s-preventive-and-acute-treatment-portfolio-at-ahs-2021

 

From what I could pull, this is the only clinical trial not sponsored by Biohaven Pharmaceuticals on Rimegepant (Nurtec). This is from the venerable NEJM. Bare in mind none of the trials, I think I have reviewed all, were conducted on Cluster Headaches. Nothing looks impressive either. My background isn’t necessary, but friendly advice, if you need to pull celebrity status incessantly to promote a product, than you have zero basis to begin with. This we can learn from the SSRIs, which Dr. Kirsh proved worked no better than placebo.
 

https://www.nejm.org/doi/pdf/10.1056/NEJMoa1811090?articleTools=true

[Juss]

I should note that I support other CGRP use, as I unfortunately subjected myself to disability and the atrocities of CMS. Their formulary is restrictive and at one time you could receive fremanezumab (Ajovy), and now you can’t. That worked, but I develop a resistance and tolerance to everything but certain psychiatric medications that no doctor, nurse practitioner, or scientist can figure out. My point, don’t think that only Emgality will work. 

I know some with Cluster Headaches, not involved in here, that deal with the VA, and they notice results with Eranumab (Aimovig). 

What I don't see people discussing and what CH Father could fill in is the adjunctive therapy of Botulin Toxin. Botox with a CGRP-and I am not the only one who it appears to be efficacious past placebo. That is an area that I don't explore, as I stopped seeing Academic Teaching headache specialists, and neurologists; however, I keep current on CGRP for if you look into my pathophysiology posts, all the evidence substantiates it. I just get better results doctoring myself, on the sidebar.
 

I don't suggest the aforementioned without insurance unless you are Bezos. I don't think I am allowed to put the wholesale prices on here, but I doubt many can fork the bill. 

I hope that @CHfathercan enlighten about Botox, as he is the genius. For me, they are symbiotic and you need both to deliver results. He would know, as he is the one most in the loop. I would hate for you to pay the huge copays on things that aren't necessary. 

[jon019]

33 minutes ago, Juss said:

I don't suggest the aforementioned without insurance unless you are Bezos. I don't think I am allowed to put the wholesale prices on here, but I doubt many can fork the bill. 

....that's the point...most of us have limited time/resources/opportunities/$ so it behooves to prioritize attempts based on likelihood of any measure helping. years ago i had a neuro who was involved in an ultimately successful botox trial for migraine (early one maybe), who refused my participation in the trial because "it doesn't work for CH". free woulda worked but, i followed out of interest anyway....as other clusterheads have tried and occasionally continue to. the sucess rate for CH, per mostly anecdotal in my experience (and i suspect research-wise), is very poor. made my choice easy...no telling what level of desperation would get me there....but never did.....

....sure, share the price, inquiring minds would love to know....

[Juss]

I know that the yearly wholesale acquisition cost of Erenumab 140mg and Fremanezumab 625/225mg are $6,900. OR, $575 per month for the monthly injection. Some sources claim that the rest of the mAbs are $8,500 per year or more.

In other words, while subjective, and I understand if people don't take my side, we should not overburden our insurance until exhausting known options. Further, I feel insurance should only be for catastrophic expenditures. These drugs need wholesale, sliding-free market options.

Know source wants to state the final cost of Botox to the taxpayer or insurance, all of it is speculative and all sources exceed $5,820 a go. 

These aren't cheap options and without proper testing, it's tough for me to say. I admit to being one that used to jump on board the latest novel treatment, when I had the Cadillac Health Care, now I question what I did to my brain and body. My point is, why do you think so many resorts to Vitamin M? I don't get on board b/c it doesn't work (for me) and because I am taking my approach which will take years of research but by all means, I support and stand tall who just use Vitamin M.

Worse, we haven't discussed copays. I hear of people paying a 1/3 of the drug price. I posted a comparison to the novel drugs from the 90s. They pull this mess in the psychiatric world. The best is and always will be a drug from the 1940s, Lithium.

 

 

[CHfather]

15 hours ago, Juss said:

What I don't see people discussing and what CH Father could fill in is the adjunctive therapy of Botulin Toxin. . . . 
I hope that @CHfathercan enlighten about Botox, as he is the genius. For me, they are symbiotic and you need both to deliver results. He would know, as he is the one most in the loop.

Juss,

When I first joined this board, almost exactly eleven years ago, I was desperate to help my daughter (the person in my family who has CH).  That's why I picked the screen name that I have.  There was a guy who was furious with me, and let me know that in a very harsh PM, because he thought I was trying to make myself sound like something special, I guess like the "father" of CB or something.  Farthest thing from my mind, but he wasn't having it.  (He was generous enough to write me an apology, a few years later, for that and some other irritations he had with me. I have always been touched by that decency on his part (Brian, if you're listening. . . ))

I mention this because I think you might have me confused with the guy who is indeed the "father" of this board, Bob Wold, whose screen name is Psiloscribe, and who perhaps is a genius in terms of knowing things about CH.  I have no knowledge about Botox, and don't think I have posted anything about Botox, except maybe to point someone to the research here and there. 

If I were to need anything to convince myself that I am not a genius, it would be your posts, which I ponder from time to time, not only because of their content, which I generally can't grasp (but which I am glad to see that others, such as Bosco', Shaun', Jeebs, and jon' are learning from, so they can help teach me/us), but because they illustrate to me that I only know "a lot" about the most conventional things related to CH -- oxygen, meds, RC seeds, and a couple of others -- and the advice I share is nowhere as sophisticated as it perhaps could be.  I have been telling myself to go back and thoroughly read your posts and links so I could at least be a little smarter, and with some free time I hope to undertake that project. 

(You reminded me of one of my favorite lines from a novel I liked quite a lot, by John Lanchester.  The narrator, who one slowly comes to realize is completely nuts, is very jealous of his brother, who many consider to be a genius.  The narrator says, "I myself have always disliked being called a 'genius.' It is fascinating to notice how quick people have been to intuit this aversion and avoid using the term."

[Juss]

I did get you confused with Bob and have propensities to do such things-my mistakes. Regardless, someone else did address the Botox issue and it is best to take the advice or consensus of the group (why I recommended an opinion). I admit to experimentation, we are all desperate, but I am paying for it in numerous ways. I'm on the extreme and that is why I ask for opinions on such serious matters as this. Good luck. It is manageable but can take years. I don't bullshit a bullshitter.

[mit12]

I am trying Nurtec because I have Migraines at least 3 times a week. I believe that my situation is a little different than most CH suffers as I have never had a CH without having a migraine first. My doctor described my situation as a migraine headaches with cluster events. I always said that I believe if I can get controll of my migraines I can be CH free. I will be contacting my Insurance on Monday to see if they cover Nurtec. If my insurance covers it I will keep you guys informed with my results.

[Juss]

7 hours ago, mit12 said:

I am trying Nurtec because I have Migraines at least 3 times a week. I believe that my situation is a little different than most CH suffers as I have never had a CH without having a migraine first. My doctor described my situation as a migraine headaches with cluster events. I always said that I believe if I can get controll of my migraines I can be CH free. I will be contacting my Insurance on Monday to see if they cover Nurtec. If my insurance covers it I will keep you guys informed with my results.

I appreciate and respect your approach, and it is one that I take. Keeping my baseline headache in check prevents migraine, preventing migraine appears to prevent the Cluster Headaches. That stated if limited by a formulary, you are footing the bill, and most can't afford that. 

While not scientific, by following that logic I have about eliminated my Cluster attacks. Best of luck, it's a matter of process, experimentation, and trial & error (never exact).

I wish someone could explain how to eradicate the incessant exhaustion associated with CFS/FMS on the sidebar. 

[mit12]

An update,

Well insurance is weird, doc prescribed 16 for a month 1 every other day. Insurance only pays for 8 a month! I called the insurance and told them that Nurtec does not work well for me as an abortive but it seems to be doing great as a preventative medication taking it every other day. Well guess what, they cover every other day if I get a 3 month supply????  (So guys call your insurance and ask questions it can’t hurt) So I am getting 48 tabs for $90. I have been taking it for almost 1 month now and I have been migraine free and no Clusters so far. I am hoping that It keeps the migraines in check because like I have said before I have never had a Cluster without having a migraine first. I will keep the updates coming. 

[CHfather]

1 hour ago, mit12 said:

I have been taking it for almost 1 month now and I have been migraine free and no Clusters so far.

!!!!!!!!!!

[spiny]

Oh Mit, that is awesome!!  Just made my evening dude. 

Congratulations on your success with insurance too!! Way to go!!

I am sure that CHF will hang onto this for the future!!  He is really great at that stuff.

[Juss]

Insurance keeps a lid on its formulary, accounting, and assessment approaches. I had the opportunity to take an advanced accounting course in accounting for CMS expenditures and should have taken it. To say that is esoteric would be an abuse of language. They have methods and reasons for everything. 

Good luck with your success. You must be on private sector insurance? Well, if you can call it that. Regardless, that is great to hear and why I tell people to try it if it is covered or affordable. 

[mit12]

Well last night had a pretty bad migraine. It is a little depressing but like every thing else we deal with I need to look at the positive. 1 migraine in a month is way better than at least 3 per week! 

[Juss]

I understand and have crap days, but I refuse anything new and without substantial backing. And on that note, I refuse all abortive medications. I'm trying to avoid taking any medication unless it is to prevent me from going mental.

My parents are in their 70s and have impeccable health because they refuse medications unless essential, and then only on the shortest duration as possible. That is the philosophy I am taking, and the results are impressive.

I use nutraceutical approaches (not herbal medicine and snake oil) to treat my issues as much as possible, to each its own. Good luck in finding relief. Sometimes it is a process and sometimes it is a vicious circle.

[mit12]

Juss,

I am going to be 60 in April and have suffered with migraines from my early teens on. The list of meds that have been tried to help control the headaches is amazing. With each new wonder drug there is a new hope that the 45 plus years of suffering will come to an end. It was not until my early 20s that the clusters started. I was misdiagnosed for years as just migraines. When I finally started getting treated for clusters I finally got some relief. What I have learned along the way is nothing seems to work for long. I try to stay positive and not get depressed but this roller coaster ride we call life is hard to keep a smile on your face.  
 

I would like to thank everyone of you for your support and encouraging words. Until the next up date hope you all have happy holidays. 

[mit12]

Well one more week added to the no headache list. I hope it keeps going. 

[Juss]

Congratulations. Avoid the triggers and you may go weeks more. Fingers crossed. 
 

Also, I have the same problem with developing immunity to drugs. Don’t lose hope, I find the ones that stay working are ones that give you that holy shit effect. What I mean is, you know on the first try if it is going to help. I think I'm approaching 100 drugs that I have tried, with all the medical conditions I have, and of those, 4 were holy shit drugs and still work miracles. This may be your break.

Oddly enough, all of my holy shit drugs target sodium channels and are for multiple purposes and a broad spectrum of diagnoses. They are Lithium ER, Toprimate, Lamotrigine, and Naltrexone.
 

25 years wasted to figure out which four could treat intractable migraine/Cluster, Fibromyalgia, Impulse Control Disorder, Borderline Personality Disorder, Mixed Bipolar Severe, Panic Disorder w/ Panic Attacks in partial remission. Go figure. Again, I wasted millions (in insurance) tons of hospitalizations, when four dirt cheap meds can treat it all. 

Always keep hope, sometimes it takes finding a Nurse Practitioner (if legal to practice by themselves in your state). Functional NPs are amazing, but a down and dirty bypass are to hire a psych NP, they are often holistic oriented and understand a considerable amount about nutrition. Doctors are not required to take a nutrition course in their training. 

[jon019]

7 hours ago, Juss said:

Doctors are not required to take a nutrition course in their training. 

....yeah, it's one of those annoying electives you blow off...like "Headache 101"....

[Juss]

I should state that I talked to a PA friend if required most doctors take a single course in nutrition. And @jon019lmao, if that ain't the truth. As I have said a million times, I got better results giving up and doctoring myself. I know one med that helps. Until they change the laws, I don't need to see a neuro to get it. 

[mit12]

Update time, Another week headache free! 

[Bejeeber]

On 12/15/2021 at 4:23 AM, Juss said:

Doctors are not required to take a nutrition course in their training

Yet I still see the heavy eye roll inducing "always consult your doctor" regarding questions about diet, foods, nutritional supplements, etc. 

Hopefully the glaring omission in their training will be rectified (?), with some of them at least required to take the single course, but I've been in the mindset for a long time of why the hell would I consult a doctor on nutrition when it's practically assured that even their receptionist will be as knowledgeable, if not more, on the subject?

[mit12]

Another 3 weeks and it seems like I get 1 migraine every 2 weeks or so. Completely CH free since I started Nurtec.  I have always thought that if I could get controll of the migraines the clusters would stop. I sure hope this continues. 

Edited January 12, 2022 by mit12