OUCH(UK) Organisation for the Understanding of Cluster Headache


Advice Line

0800 6696 824

Emgality … First FDA approved drug proven to reduce the number of attacks!!

2 posts / 0 new
Last post
#1 Thu, 09/05/2024 - 19:07
Last seen: 2 weeks 4 days ago
Joined: 09/05/2024 - 18:54

Emgality … First FDA approved drug proven to reduce the number of attacks!!

Looking for any information or feedback! 
After a brutal change in my CH recently I was referred to a specialist at my local hospital (Yes someone who specialises in CH!!) very rare in my area! 
my GP and his lack of understanding around the condition had been rationing me to a maximum of 2 sumitriptan subcuts! Being unable to treat my attacks seem to exacerbate them and quite honestly was beyond devastated at how dibilitated i was feeling! 
so specialist has prescribed huge backup supply of emergency jabs! 
she has also put me forward for and had funding accepted to start on Emgality, a drug that is apparently the first FDA approved drug proven to reduce the number of attacks! A subcut taken every four weeks. Have done some research.... some people have reported it to have changed there lives whilst others feedback was sort of middle line. 
curious to know if anyone else has started on the emgality therapy and what there thoughts are? 
I cried half way through my appointment because quite frankly for the first time in a VERY long time I felt understood! So upset with mismanagement CH patients endure due to lack of understanding around the disease! I have never felt the relief i had having a discussion with this lovely lady! Hoping Emgality may offer some long awaiting preventative treatments! 

Sun, 19/05/2024 - 11:16
Last seen: 1 week 2 days ago
Joined: 29/03/2023 - 00:01

Hi that sounds amazing!  I'm with you on the total lack of understanding and support we CH sufferers endure, I also cry with frustration and relief during neuro appointments. I've not heard of the new drug you mentioned but am always glad to hear of any new advancement available being a chronic CH sufferer for 40 years.  Keep us posted....much love x

Login to add comments

Share This

© OUCH(uk) 2024 | email: info@ouchuk.org
Registered Charity No. 1091919 | Registered in England Company No. 04339368