Cyclic Vomiting Syndrome Message Board
Sign up Calendar Latest Topics
 
 
 


Reply
  Author   Comment  
scooky1

Registered:
Posts: 58
Reply with quote  #1 
I heard about "Aimovig" (erenumab-aooe) on a morning TV show GMA or one of those, the drug is a once a month self injectable for migrain (very expencive) has anyone tried it for CVS?
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 879
Reply with quote  #2 
I have heard that a couple have, but not if it worked for them. There was another medication just like Aimovig approved by the FDA a couple days ago. Should help bring the price down. Right now, even migraine sufferers are struggling to get it. But someone somewhere will eventually try it for CVS. Especially if their CVS is migraine driven, like my son’s. The more we control the migraines, the more his cvs is controlled.
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
scooky1

Registered:
Posts: 58
Reply with quote  #3 
Blynda
You say "maigrain driven episode" I have been liveing CVS for 25 years and was told from the begining that CVS was a form of maigrain, an "abdominal maigrain" and thats why we use meds like sumatriptan "imatrex" what do you mean when you say maigrain driven episode? Aimovig is a once a month injection and quite spendy, I hear there is one clone and another that will come on line soon. I have been in the ER and been admited about 10-11 times this year so far. if I can get it approved by the insurance co. I'll  be the lab rat. the last time I tried the new "cure" drug for CVS was "amatriptaline" not good! side affect tenitus (loud hissing in my head for life) I would chance it all to be free from the monster.
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,585
Reply with quote  #4 
This med was only very recently approved and has a patent for 20 years.

Abdominal migraine means that pain is more predominate than vomiting.  I am told that the term "abdominal migraine" is no longer being used.  Dr. Felsiher describes the two terms as merely semantics, one being more pain prevalent and the other being more vomiting prevalent.  

There might be other more affordable migraine medications that might help you.  

With CVS, Amitriptyline is usually the first preventative medication tried.  Some who do not do well on Ami do better on Nortriptyline.  Both are in the tricyclic family (Despiramine is another member of that group).

If you have tried various migraine meds as a preventive with no improvement, and your doctor agrees, maybe the dug company would be interested in supplying the med to you to see if this med might help abdominal migraine.

One of my kids is getting a monthly injection of a newer costly medication for an off label use. She is doing fabulous on the medication, and the pharmaceutical company supplies at no cost.  Her insurance kept rejecting her doctors appeal and finally supplied the med. 

Have you tried the supplements?  You might find an improvement.  Be sure to talk with your doctor first.  Most doctors just say the supplements won't do you any harm and most people find they do better on them.



__________________
ginny CVSA Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 879
Reply with quote  #5 
There can be other co-morbid conditions in conjunction with CVS. Migraines and Mitochondrial conditions for example. I think that abdominal migraines may be a more medically acceptable and is probably back on the uprise for being used medically due to CHS(cannabinoid Hyperemesis Syndrome) confusion. 

Dr. Boles differentiates the two terms by saying if the abdominal pain is the prevalent symptom, its abdominal migraines. If vomiting is the primary symptom then he would call it CVS. 

If they let you test it and you are responsive, we would love to here about it.

I know that you can get at least the first 2 doses of Aimovig from the company with an RX from your Physician.  We have learned that it is not a medication that my son can take due to an underlying blood condition that causes issues with clotting. Since Aimovig is meant to adhere to Globulins, this can cause increase clotting. So for people with auto-immune conditions, I would also suggest checking with a Rheumatologist or immunologist before beginning Aimovig.. Our Neurologist was not aware that this could be an issue for clotting or auto-immune conditions. So still new enough for us(personally) to be cautious. 

But some doctor will try to use it "off-label" for difficult cases. Especially with a new similar medications being approved, and others on the horizon. It will bring down the price and open the availability. 

My son uses similar methods of controlling his migraines and abdominal migraines. He takes daily preventative then has rescue meds. He uses Zomig. As the imitrex had side effects that exacerbated symptoms. So a lot of the time it is asking or telling the doctor that the meds is having negative side effects, or has lost it's efficacy. We went through the same thing with Zofran. It was not helpful or impactful for my son's vomiting at all. It's fine tuning and trial and error most of the time. 

Hope that was helpful.

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 879
Reply with quote  #6 
The new injectable that was FDA approved recently is AJOVY, by Teva Pharmaceuticals. http://www.ajovy.com 
__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 879
Reply with quote  #7 
And here is the third.. 

https://investor.lilly.com/news-releases/news-release-details/lillys-emgalitytm-galcanezumab-gnlm-receives-us-fda-approval

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
scooky1

Registered:
Posts: 58
Reply with quote  #8 
Thanks for the info and for being there, you guys are great!
Ok so I got the Aimovig and used it yesterday, 10-11-18 lets see what happens. I have been in the hospital 7 times in the last 3 months. (it was torture) I've had clusters of episodes before followed by periods of symptom free that can last for months as we all have. wish there was a test to see if this is working but I know it's just a wait and see what happens. this is not my first time to try a new drug that has promise, the last time was amitriptaline, that caused me to have "tinnitus" and that is for life, hope this one doesn't come with any surprises and wouldn't be nice to never have it happen again. oh yea, $500 a pop, hope the insurance co. will stick by me.
0
wynnak

Avatar / Picture

Moderators
Registered:
Posts: 879
Reply with quote  #9 
Scooky1... you can apply to the Company that produces Aimovig to get the first couple months covered. I have two in my fridge right now.. (don't tell, I don't want someone coming after me cause I have them). They are for me not my CVSer. But recent development in my personal health have a warning to not use it .. Yet. Becasue of the way it affects the system. Globulins and words that make no sense to people not in the medical field. 

I would love to hear how it goes.. I'm not sure how long it takes to reach efficacy. But it is suggested to use for 3 months before deciding. 

__________________
Blynda
Message Board Moderator
Monthly Support Call Moderator
0
scooky1

Registered:
Posts: 58
Reply with quote  #10 
Thanks Blynda
I will ask the maker about the free doses that would be good to have on hand. It would really suck if this med works and then the insurance stopped paying for it, they did that with another med I really need and now I can't get it anymore. (hyosiamine sulfate) spelling ? begging the insurance Co. now to change their policy, for the last 8 months. I use it for the esophageal  spasm's (so painful I have blacked out) feels like a heart attack, I asked a question some years if anybody else has that symptom and it was so long ago I forget what the response was but I've been having that chest pain one more often now and really need that med, again "wait and see" I used it for about ten years before they changed their policy. Hope this new one does the trick, I have been doing this for over 25 years so I don't really believe "Aimovig" is going to work but I was feeling so lucky I went out and bought two power ball tickets!
0
scooky1

Registered:
Posts: 58
Reply with quote  #11 
Aimovig update 10-31-18
Did not win power ball and just got out of a four day stay at the hospital (CVS) they say it takes a while for Aimovig to build up in the body. so I will continue with it, now the drug Co. that makes it is willing to give up to 5 or 6 months worth for free but you must apply for it with your Dr./ Dr's office. the way I understand it they won't just send everybody free samples since they retail for $500 per dose. good luck everybody!
0
ginny

Avatar / Picture

Moderator
Registered:
Posts: 4,585
Reply with quote  #12 
I hope this works for you.  I am so sorry about the four day admission.  I do hope you were well treated.

One of my kids is getting an off label med at no personal cost to her or her insurance.  I kind of assume her insurance will kick in.  This adult kid cannot be in sunlight or near windows. She reacts to lightbulbs. After around a couple months of treatment, she is now ok with some sun and hopefully will keep improving.  Her insurance turned her down around 4 times, and either she or her doctor contacted the pharm company.

Please keep us updated on your progress. 

__________________
ginny CVSA Moderator
0
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.