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LennyC

Aimovig, new CGRP inhibitor

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So I started my episode around mid-July, quickly ramped up to 4x hits a day, avoided triptans as much as possible with O2 and 5hr Energies - go to be a bit too much, started a dexamethasone taper a little over 2 weeks ago, have 3 days left of 4 mgs a day - no headaches while on dex.

My neuro got me signed up for new Amgen CGRP monoclonal inhibitor, took my first 70 mg dose this morning.

In the past, sometimes the dex taper broke my episode, but sometimes not. 2 years ago, I used MM to do it, working on getting some more if possible in case all this new stuff doesn't work.

I'll keep y'all in the loop. The injection itself was easy, way less painful than Sumatriptan injection.

 

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Thank you so much for letting us know, Lenny'.  Hoping for the best for you, and looking forward to learning anything about the Aimovig.  I hope maybe the dex taper will stop your cycle again.  Did your doctor tell you anything about the likely effects of Aimovig -- Is it supposed to stop a cycle pretty quickly, or mainly be a longer-term preventive?  Will you be going back regularly for injections, even if you're out of cycle?  Is it as expensive as has been reported in some places (~$7,000/year, as I recall)?  I'm really praying that Aimovig's going to do what it's been said to do. 

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If I can get my cycle to quit, I'll do whatever out-of-episode prophylaxis is available - I've burned through almost everything else. Over the past 20 years, I've been on Topamax, Depakote, Keppra, Verapamil, Lithium, Lamotrigine, Lacosamide, and Oxcarbazepine. I've done 1 g Depacon Infusions with Solumedrol. I did Botox every 3 months for 1.5 years. I've done occipital and temporal nerve blocks.

The beast always returned. I recently has about a 2 year break - on zero drugs - after a MM bust and having a little left over for every 2 month boost x 4 rounds.

 Which brings us to now - I have excellent insurance, and the Aimovig Ally program will keep my costs down for at least a year - so if I don't see any adverse events from doing the monthly shots, I'll keep doing them until the HAs return, then re-evaluate. If my episode doesn't break from the dex, I'll be busting again.

As to the mechanism of action of the CGRP inhibitor - it is supposed to reduce number of hits and intensity. CGRP is a "messenger" type neural chemical, whose message is typically "pain". It's one of three secondary chemicals that intensify migraine pain, after the activation of the serotonergic receptors at the outset of the headache. It's entirely possible that this mechanism will have more relevance to chronic cluster than episodic, but we'll see. 

As to the cost - nobody should be paying $7000/year for this or any drug. If you have any sort of commercial insurance, there is co-pay assistance through Amgen. If you don't have insurance, you should apply for full-on patient assistance programs. Paying full cash price for branded drugs can be avoided most of the time. Start with pparx.org if you need help.

Lenny

Edited by LennyC

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So it's been about 2 weeks since my Aimovig injection, and about 11 days since I last took any steroids. I've been basically HA free, except for one weird thing yesterday. I felt like I was about to get hit - kip 2 ish - and I slammed a 5hr energy, which is my typical protocol. It got a little worse, maybe kip 3/4, and then leveled off, didn't go after the O2 since I was driving. after about 1/2 hour, I noticed my left eye tearing (HAs always on my left side). Usually I don't get the other symptoms (eye tear, nose stuffy, tooth pain, etc.) unless my HA gets to a kip 6/7. I wonder whether the Aimovig blocking CGRP kept the pain down, but the collateral symptoms came anyway. Weird, like I said. I also revived my ketogenic diet a few days ago, and even my shadows are gone. Not that I'm going to have any red wine anytime soon -------

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Just an update, still headache free. There are now three different MABs available for the CGRP pathway - Aimovig, Emgality, and Ajovy. If you haven't tried one yet, please do. It might be a life changer. My 2 cents, I'm not sure if it would break a cycle, so if you are in the throes of a major cycle, I'd start a steroid taper and the MAB at the same time to break/prophylax the cluster episode.

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