Frilling Posted June 12, 2019 Share Posted June 12, 2019 Has anyone tried the newly FDA Approved Emgality shot for Episodic Cluster Headaches? If so, how has it been working? According to the FDA 300 mgs is needed for an onset of an attack. Quote Link to comment Share on other sites More sharing options...
Pmcali1 Posted June 14, 2019 Share Posted June 14, 2019 I went to my neurologist today and she informed me it was approved yesterday by the FDA for CH and will be available for prescription (300 mL) Monday. She had samples of the migraine 130 mL doses that I took two of. Supposedly it takes a few weeks to a month to start working. I’ll keep you posted. 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted June 14, 2019 Share Posted June 14, 2019 (edited) @Frilling emgalitiy is a preventative not an aborter for an acute attack. In the emgalitiy study they found that 70% of the users saw a 50% reduction in HA. Hope you’ll be the lucky one it completely gets rid of the CH. keep us updated. Edited June 15, 2019 by Freud Quote Link to comment Share on other sites More sharing options...
Freud Posted June 15, 2019 Share Posted June 15, 2019 Just because it doesn’t cross the brain blood barrier doesn’t mean it can’t be effective. If it exerts its effectiveness. systemically on circulating CGRP thus lowering the total concentration in the body Quote Link to comment Share on other sites More sharing options...
jfrillin Posted June 22, 2019 Share Posted June 22, 2019 Thank you all for your feedback. From the responses i got i am not feeling very optimistic anymore. I was very excited when i saw the news release about it. I thought to myself....FINALLY!! I have a husand & daughter that deals with this nightmare. Now, i feel like the bubble has burst yet again. Quote Link to comment Share on other sites More sharing options...
jon019 Posted June 22, 2019 Share Posted June 22, 2019 (edited) ….Henry Ford used to say " whether you think you can...or you think you can't...you're right"....always a good idea to solicit opinion...but there is only ONE way to truly know....every med and every strategy I ever tried I went in believing "THIS is the one"....that way I knew if it didn't work it wasn't because I didn't give it a FAIR shot.... Edited June 22, 2019 by jon019 1 Quote Link to comment Share on other sites More sharing options...
gore2424 Posted June 22, 2019 Share Posted June 22, 2019 Hi everyone. I have been chronic for 20 years but my neurology Dr. thinks outside the box and had me try the Emgality. Its a once a month 120 mg/ml single dose injection prefilled pen 2 per box.She had me take 2 first month then 3 the next three months. Being chronic didnt help me except put me to sleep for days which I will take that sleep as a win. I am really hopefull the other headaches types will get the relief they deserve. Also in each box is a savings card for up to 12 months free if you have commercial insurance. Terry Quote Link to comment Share on other sites More sharing options...
Campbell27 Posted November 17, 2019 Share Posted November 17, 2019 The new monthly prescription level seems to be moving up to 300Mg/mo. I’ve been collecting data from other sources and have found neurologists increasing their dosages to that level. The results are significant with many patients reporting 75% - 100% reduction within 3 weeks It’s something to check out. Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted November 17, 2019 Share Posted November 17, 2019 These new CRGP drugs may be very helpful in managing clusters. There have been consistent positive reports of success with these drugs. They have to be used in higher doses than for migraine patients and we still don't know if episodics need to take all the time or only when in cycle. There are also "indication limitations" for competitive products like Amovig (indicated for chronic migraines). The biggest concern is these medications are very new and we have zero long term safety data. In contrast D3 seems safe and individual reports are encouraging. Busting has an enormous amount of safety data from the recreational world and individual reports are generally positive. Its all a work in progress and sometimes its better to dance with the devil you know. If you are driving "between the lines" of life then O2 remains the most logical abortive assisted occasionally by imitrex like meds and the CGRP drugs may be the best prescription preventative we have available. 1 Quote Link to comment Share on other sites More sharing options...
S.E. Posted November 18, 2019 Share Posted November 18, 2019 Emgality "does it play well with others?" I was Chronic for 1 1/2 years then busted and have been attack free for 1 1/2 years now. I still have daily shadows ha but have learned to except the inconvenience. Not a day goes by with out me worrying the four- six attacks lasting 2-3 hours coming back. My doc wants me to try Emgality and I'm concerned it will ruin my dose of 3 g wait 5 days do another 3 g. I have it down to 40-45 days when I start felling pain behind my eye I dose. Has anyone stopped busting to try Emgality and did you wait for an attack to abort or did you take it prophylacticly. I feel greedy having found busting but it's been some long rough trips( smaller doses didn't seam to work) and they come around quickly. I'm hopping to read of people having success with Emgality and how they transitioned from busting. SE. Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted November 18, 2019 Share Posted November 18, 2019 No real data or much anecdotal information on this topic. Most of our suspicions about "blocking agents" come from self reports. Most of the substances implicated in blocking are active at the serotonin receptor in the central nervous system or have some psychotropic effect. The CGRP injections do not seem to cross into the brain (blood brain barrier) so unless they can influence metabolism of busting agents peripherally it should be ok to use the two together. We have scant data on CGRP inhibitors especially in areas we are interested. There is no long term safety data. Sometimes it is best to stick with the devil you know. Quote Link to comment Share on other sites More sharing options...
fireface Posted November 19, 2019 Share Posted November 19, 2019 (edited) I’m into my 5th. week of an episodic cycle. I just got my second month 300mg Emgality shots. I have been totally pain free since week 2. I’m optimistic. My cycles usually last a minimum of 3 months. I have to pay $600 a month for the shots, but if it continues to work this well, I’m good with that. I even went away this last weekend without an O2 tank. I would have never done that with any other cycle. The neurological center I go to (Michigan Head pain & Neurological Institute - MHNI) was one of the trial centers for Emgality. They say test results were very successful. I have to agree, so far. Edited November 19, 2019 by fireface 2 Quote Link to comment Share on other sites More sharing options...
Pebblesthecorgi Posted November 19, 2019 Share Posted November 19, 2019 Thanks for the report, I hope it continues to work for you Quote Link to comment Share on other sites More sharing options...
docjavadude Posted November 22, 2019 Share Posted November 22, 2019 Even though (according to every teacher I have ever had) there are none, this likely IS a stupid question. Does it matter what time of day one injects Emgality? My first set of three syringes arrived today. Besides ensuring the medication is room temperature, does it matter if I inject in the morning, afternoon, evening, bedtime? Thanks for indulging the silly questions... Quote Link to comment Share on other sites More sharing options...
jon019 Posted November 23, 2019 Share Posted November 23, 2019 ......actually an excellent question...it CAN be VERY specific and important to the med in use ....best bet to ask your Pharmacist (or any pharm, seems they're in every grocery store). they get doctorates (about 8 yrs of school) these days.... and (unless it's Costco and they can't be bothered) are more capable than most docs providing just how much detail you want/need..... ...if you get your meds mail order, they have pharms on staff specifically for patient consult...besides a good practice...it's the law! 2 Quote Link to comment Share on other sites More sharing options...
docjavadude Posted November 23, 2019 Share Posted November 23, 2019 The pharmacist's counsel was a) it doesn't really matter, but b) it's never bad to take new medications in the morning (ones that don't have a specific dosing time) in case there are side effects. Makes sense that we'd more likely notice any effects if we're awake to see/feel them. Thought that was good, and "doh!" (somewhat obvious) advice. So the injections were made this morning. Keeping fingers crossed that it helps break this torturous cycle! 2 Quote Link to comment Share on other sites More sharing options...
jon019 Posted November 23, 2019 Share Posted November 23, 2019 ...and once you learn the side effects for a med, if any, you can adjust accordingly. I know one clusterhead who was able to find some success with Topamax (topiramate)...aka dopeymax ....by taking at night before bed...thus avoiding the majority of debilitating side effects most report... ...let us know how Emgality goes for you!.... Quote Link to comment Share on other sites More sharing options...
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