Hey All,
I hope everyone is feeling well!
I meet with my doctor at Cedars Sinai on the 17th. We discussed potentially trying out some of the new migraine drugs if it worked well with her other “normal/traditional” migraine patients. Anyone already on it? And if so, what have you noticed?
There are already a couple of threads for Aimovig - let’s focus on Ajovy in this Topic. I’ve amended your question.
Are Ajovy and Aimovig different drugs ?
I believe so, Ajovy just got approved by FDA in September 2018. That’s not long so not surprised we haven’t seen any posts about it previously? However, presumably same ‘family’ of drugs with similar therapeutic action?
My neuro recently prescibed Ajovy. My migraine journey began 13 years ago. For five of those years an ENT and neurotologist diagnosed it as Menieres. After five years of misery but no hearning loss they determined it was migraines. My current neuro has been treating me for 6 years and he has been a lifesaver (literally). My original cocktail was Atenolol, Effexor and Topamax. Sterioids were used as a rescue for tough breakthroughs. After two episodes with kidney stones Topamax was replaced with Lamictal. The Lamictal has not been as effective. My neuro would like for me to try the Ajovy. He has had great results with other patients. I have not been able to find a lot of information on the drug. There seems to be some issues with serious side effects. Please let me know if you have had any experience with this med - good or bad.
My Neuro is also warming me up to the idea of these drugs. He says that its not as well studied for MAV, but in theory there is decent chance it would help me since I’ve been getting benefit from Verapamil and Topomax.
A bit nervous though, I would feel a bit like a guinea pig…
Could be very valid reason for that, Erik … I guess you’d be one? Or maybe you could look on it more as a ‘pioneer’. Mmm. Look at it this way if somebody hadn’t been brave enough to taste human urine, the World might still be waiting for a cure for diabetes. Helen
It’s so new guess there isn’t that much info about yet. Don’t know about this site. Ididn’t much like the sound of issues relating to ‘hypersensitivity’. That doesn’t sound good news for migraineurs to me. Helen
http://www.evaluate.com/vantage/articles/news/teva-tries-make-something-out-nothing-ajovy-approval
In my reading my impression has been that Ajovy and the other anti-CGRP drugs had very few side effects. The article that was linked mentioned “injection site” issues, which don’t sound daunting. I guess you have to learn to inject yourself properly. The prohibitive factor with these drugs is, as many are aware, the currently outrageous cost.
Although in the U.S. it seems private insurance is covering them now for the most part. There are some hoops to go through, but this is what my Neurologist said a couple weeks ago.
I know one person who is doing well on Ajovy for vestibular migraines. Still only one month in and early days.
As an update…I had my first injection on 1//31. Prior to the injection I was apprehensive about side effects and trying a drug only on the market for a few months. My cousin is a nurse and she gave me the injection. It did sting but I have had worse. I am sure it makes a difference if someone experienced gives the injection over self injection. It has been 48 hours and I have not had any side effects. I did not have any injection site issues - not even redness. I have had some vertigo but no more than normal. I am cautiously optimistic. The real test will be in two weeks when I begin to wean off Lamicatal. I will keep you posted!
Good luck. Do keep us posted.
I am considering trying Ajovy. When you say you know one person doing well, does that mean they are symptom free?
Of course, currently, all these injectables are still very new and not widely available much depending on where you live and,in some instances, how deep your pockets prove to be. I understand Ajovy, which manufacturer recommends is only used in people having at least four migraine days per month, has yet to receive EU approval as of February 2019 so presumably isn’t yet available in Europe. The other recently much publicised drug, Aimovig, has been rejected by NICE for use by the UK NHS on grounds of expense and although available privately at a cost of £385 monthly is restricted to people who suffer four days migraine per month and who have already failed three oral preventatives, similar to restrictions applied to Botox I understand. No doubt this will change with the passage of time but meanwhile proves frustrating for many. Helen
it appears that at long last and albeit with some stipulated restrictions funding will be made available for Ajovy, aka Fremanezumab.
Last paragraph very informative in its way. Treatment will be stopped if migraine frequency does not fall by 30% after 12 weeks.
www.dailymail.co.uk/health/article-8101947/Chronic-migraine-sufferers-new-drug-20-years.html
1 week on Emgality for me, I haven’t had to pay at all so far.
Going right back to the title of this thread I really can’t imagine there are many people in the UK currently being encouraged to take Ajovy. Seems GPs don’t even know it’s exists. I quizzed a new one to me at my own practice last week and she has yet to hear of any injectable preventatives. So NICE have approved one which is now available on the NHS subject to restrictions and certain criteria having been met but it seems somebody has yet to tell doctors in the NHS of its existence. Sounds about right.
My doctor mentioned Ajovy as a possible medication after we give nortriptyline a good try. At 30mg so far and haven’t had an episode in a few weeks. But I too did not like the side effects mentioned for Ajovy, so not eager to try it.
Might I ask what country you live in? Not I suspect the UK.
Side effects of Ajovy? What side effects have you heard about/discovered? I was of the impression the beauty of these injectables was they bypass the gut and there were none other than the possibility of a sore injection site maybe. Must admit I thought that improbable.