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QUESTION: Does anyone know about "CGRP monoclonal antibodies" and the new FDA approve med "Aimovig"? My Headache specialist thinks I should start taking it, free trial available. Considering I've had terrible Cluster Headaches now for 15 years with no real preventative relief, this new med sounds quite interesting. I've got the preventatives down pat but this is supposed to have good preventative potential. HELP any Advice or experience to share?

My Headache Specialist thinks it will be covered, the first 3 months are given for free and then only a $10 co-pay for the next 9 months from what she told me. Doctors have applications/paperwork that needs to be completed and signed by them certifying you have migraines or Cluster Headaches. So talk to your headache specialist, I'm sure they will help you.

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I know a clusterhead in Denver who's participating in the CGRP trials and he has had very good results!  As to pricing, I saw a piece on the morning news show last week about it and uninsured cost for the treatment is estimated at $6900/year!!

Good luck!

Dallas Denny 

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Hey Pwrnapper,

I don't think Aimovig (erenumab) has been approved by the FDA for cluster headache unless you're a participant in one of the studies.  Have you tried the vitamin D3 regimen at the following link?

http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708

Near as I can figure, over 800 CHers have started this regimen and the efficacy is not that shabby.  80% of CHers who start this regimen experience ≥70% reduction in the frequency of their CH.  50% of the CHers who start this regimen experience a complete cessation of CH symptoms... all in the first 30 days.  Some in the first week or less.

Download the treatment protocol at the above link.  It contains the latest published results.

Take care,

V/R, Batch

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Thanks for your reply and I will check on the FDA requirements for Aimovig. And YES, I've been on 10,000 units of Vitamin D for over a year now, difficult to tell if it helps since I also get Botox and SPG injections, take other supplements too. But I am continuing with it, can't hurt.

 

Pwrnapper

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Aimovig has just been approved for migraines so far. It was only tested on migraine patients. The "equivalent" CGRP being studied by Eli Lilly reported pretty good results in their study for episodic clusters. It didn't meet the success goals for chronics although that doesn't mean it can't help people with clusters. It may be more difficult to get your insurance company to cover it for chronic clusters.

If you can get your doctor to write a prescription and go thru the Amgen/Novartis program to get the free injections, I think its a great opportunity.

We'll see what type of programs Lilly comes up with once their medication is available. There is a lot of negotiating still to take place as far as insurance companies approving or not, discount programs offered by each manufacturer and pricing.

https://investor.lilly.com/news-releases/news-release-details/lillys-galcanezumab-meets-primary-endpoint-phase-3-study


The initial pricing set by Amgen is pretty damn reasonable if you ask people involved in this sort of thing. The original pricing schedules looked like they might fall into the 10,000 - 15,000.00 per year range. As Denny quoted, its set at $6900.00 a year. If you compare that to what many of the other migraine/cluster meds cost, and how many this one treatment may be able to eliminate, (DHE nasal spray was retailing between $3300.00 and $5000.00 A MONTH) the insurance companies can actually save a bundle of money and more importantly, these meds can eliminate a lot of pain and suffering.
It took a lot of patient advocacy to get the pricing down to where it ended up. This pricing should keep the CGRPs off the highest tiers on insurance formularies. This will make it much easier to get approved.

The safety panel so far looks very good. Thousands of people have been on these meds for quite a while and the most often reported side effect was injection site soreness. BUT, it will take a lot more data retrieval over several years to make sure there are no long term effects.
There hasn't been any testing yet regarding pregnancy and CGRPs so its recommended that women that are pregnant or thinking of becoming pregnant should not use the CGRPs at this time.

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