kat_92 Posted February 8, 2021 Share Posted February 8, 2021 Hey guys. My doc wants me to participate in a amovig trial in a few months. I’m considering it. Does anyone have info on its affects on busting, or if it even works for clusters? What I have read online isn’t very promising. Thanks! Kat Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted February 8, 2021 Share Posted February 8, 2021 I gave it try a couple of years ago. I was well into a challenging cycle and gave it a 3 month trial. My cycle stopped for 18 months and when it reared its ugly head this past August I tried it again without any relief. After the Amovig I tried Emgality for three moths without any relief. In retrospect I belief the first Amovig trial corresponded witht eh end of my cluster cycle and it gave the illusion of success. I never had side effects from Amovig but emgality made me feel pretty crappy (flu like) for a day or two after injection. When you read the studies For this class of meds (a least Emality) they talk about reduction of frequency\intensity with 30% relief being the threshold. For me that's not worth the huge expense esp when other things have the potential to work better (D3, busting, o2, steroids, triptans) Every intervention has its ups and downs and often it seems like trying to hit a moving target. Sometimes the beast wins. 1 Quote Link to comment Share on other sites More sharing options...
jon019 Posted February 8, 2021 Share Posted February 8, 2021 (edited) ...hi Kat...can't speak to the effectiveness of amovig or it's effect on busting, but have been in clinical trials for another condition .. ....if you can work it around a busting schedule, or are willing to pause busting if need be, i would strongly encourage participation for the following reasons: ....#1...with a bullet...it might work! ...if it doesn't work, you have identified yourself as a potentially willing trial participant, for a defined condition, and they already have all of your pertinent personal data. recruiting for trials is a tedious, difficult, expensive undertaking....making participants a valued "commodity". once you are in the system, your chances for future opportunities goes way up. (added note, another one of the reasons i always encourage finding a HA specialist...they have knowledge of/access to trials...) ....Pebbles is absolutely correct...and the cost:benefit ratio may not work....but trials are ridiculously expensive and the sponsors motivation can be to your benefit...sometimes free, sometimes at reduced rate/couponed, sometimes you get access to meds that others don't (primary and adjuncts)... ....for the same reasons (trial sponsor cost/efforts/rewards in money and treatment successes) trial patients are treasured and (at least in my case) get boutique level care....with a care coordinator. means immediate access to docs and appointments and referrals and lab/procedure results and and and. careful, it might spoil ya to the regular assembly line..... ....trials are no guarantee of any better result than "standard of care"....that was the case for me. however, the information obtained is priceless to researchers/providers...finding out what doesn't work can be just as important as what does. the information obtained can be used to direct/redirect future efforts.....and the knowledge that you might be helping someone else down the line can be REALLY rewarding..... best jonathan Edited February 8, 2021 by jon019 2 1 Quote Link to comment Share on other sites More sharing options...
Cast Iron Posted February 18, 2021 Share Posted February 18, 2021 Hi Kat, I was also in cycle when I tried Aimovig without any relief, but also without any side effects. This year I tried Emgality, again in full cycle, to no avail/side effects, just like Pebbles. These anti-CGRP meds may not work, or maybe are not strong enough to cancel out a cycle, but from what I read and hear is that it is intended as an preventive med. While I was in cycle my neuro and I actually hoped it could also work as an abortive to get me out of cycle, but in hindsight we both believe it is not designed that way. In the trail groups I was in, 4 out of 10 experienced the real benefits from it, preventing CH with just one round of shots every month. If there are no financial obligations, I would certainly participate in the trail, and hopefully you are out of cycle when you start. Alex 1 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted February 20, 2021 Author Share Posted February 20, 2021 @Cast Iron so emgality is $2,300 with insurance. Unless that cures my clusters forever, I’m not doing it. That’s just absurd to buy a medication that may or may not work. So I will be turning down the emgality. I’m still considering amovig. Not sure on the price there either. Also, I am chronic. MM have been the only relief I’ve gotten thus far :/ kat Quote Link to comment Share on other sites More sharing options...
Cast Iron Posted February 21, 2021 Share Posted February 21, 2021 @kat_92 Fully understand that. The Aimovig is in the same order as Emgality here in the Netherlands, round 620 euro per shot. It is not covered by insurance though, so for me it would break the bank. I am chronic too and nothing really helps to get me out of cycle, but if it had been successful, i would seriously consider this, but both weren't. Hope you have PF days Alex 1 Quote Link to comment Share on other sites More sharing options...
Capt. Jeff Posted February 22, 2021 Share Posted February 22, 2021 I was able to receive the Emgality free for a year (sorry forgot why). Tried it the first time, bam CH. Tried the next month, same thing TRIGGERED the CH.!! Some reason I tried it the 3rd month, same results. Stopped taking.... Quote Link to comment Share on other sites More sharing options...
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