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Luis

Emgality

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Well guys, I am on emgality. I had a horrible attack yesterday morning and a second one in the afternoon which prompted my family to make me go to my neurologist again. I’ll keep you guys posted. No headache today. 

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On the 11th of november my neuro gave me 2 shots of 120 each which is dosage for migraine. My insurance finally approved it and on December 11th I had to administer 3 shots 100 each. After initial injection in November I felt nothing changed (thank goodness for oxygen and 5 mg zomig). By third week was still getting them 3 to 4 times a day but not as intense. After the 3 injections I just did I have not seen a change yet. Fingers crossed. The only side effect so far is injection site soreness and itching.

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Ok, so I have my first update. I had a cluster this morning. I could tell cause I could feel the pressure but I didn’t feel the pain or the pain was really, really dampen. I was able to continue sleeping. I mean less pain is a win, but they gotta find the cause and cure it some day. 

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...so how are folks with chronic CH supposed to even try it.. as there is no apparent end of cycle?...and I certainly wouldn't expect any insurance to approve indefinite usage....nor would that be medically wise anyway....

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@Luis one 120mg injection a month is for migraines! You really need to get oxygen and apparently a doc with at least some knowledge about clusters/TACs etc.. 'Oxygen is hard to get.' is a lousy excuse for not writing an Rx for it. I'd call any doc on that one as soon as the words hit my ears!

Edited by Brain on fire

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The md office gave me some samples and they get me a card that is supposed to help me get the medication “for free for 12 months” but I have yet to activate it. I am going to see how that works this week and give you all an update soon. 

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I have chronic clusters and have taken 300mg of emgality since FDA approval for clusters. Prior to that I took the migraine dose: 120 mg... but they do "load" you with 240, the first month (240) was great, then subsequent months after (120mg) it didn't work...  when I bumped up to 300mg it made my chronic clusters VERY manageable... unfortunately today I have a Neuro appt to tell my neuro that the emgality isn't working, that I am having terrible reactions to sumatriptan SQ and can need up to 4 3mg pens a day, and that I'm hopeless. Oxygen doesn't work, prednisone taper isn't doing anything, verapamil never touched me :/

Emgality DID help initially, so that alone might be worth it for anyone suffering from non-stop, debilitating clusters and is trying to maintain a career and life.

 

Good luck! 

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8 hours ago, Luis said:

The md office gave me some samples and they get me a card that is supposed to help me get the medication “for free for 12 months” but I have yet to activate it. I am going to see how that works this week and give you all an update soon. 

I was able to get the medication for free for one year through Lilly's program! 

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7 hours ago, EyecePick said:

I have chronic clusters and have taken 300mg of emgality since FDA approval for clusters. Prior to that I took the migraine dose: 120 mg... but they do "load" you with 240, the first month (240) was great, then subsequent months after (120mg) it didn't work...  when I bumped up to 300mg it made my chronic clusters VERY manageable... unfortunately today I have a Neuro appt to tell my neuro that the emgality isn't working, that I am having terrible reactions to sumatriptan SQ and can need up to 4 3mg pens a day, and that I'm hopeless. Oxygen doesn't work, prednisone taper isn't doing anything, verapamil never touched me :/

I'm so very sorry to read all this EyecePick.  You know your way around all this, so forgive me for this suggestion, but if oxygen properly administered doesn't work, and sumatriptan barely works, and other CH treatments also don't work, is it possible that you have hemicrania continua?  I'm sure you know this, but hemicranias look like CH, but typically don't respond to CH treatments, but do respond to the drug Indomethacin.

I would only ask in addition whether you've tried the D3 regimen.

Grabbing at straws in the hope that something might be found for lasting help.

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11 hours ago, CHfather said:

I'm so very sorry to read all this EyecePick.  You know your way around all this, so forgive me for this suggestion, but if oxygen properly administered doesn't work, and sumatriptan barely works, and other CH treatments also don't work, is it possible that you have hemicrania continua?  I'm sure you know this, but hemicranias look like CH, but typically don't respond to CH treatments, but do respond to the drug Indomethacin.

I would only ask in addition whether you've tried the D3 regimen.

Grabbing at straws in the hope that something might be found for lasting help.

I'm so happy you mentioned this! My neuro is amazing and we both discussed how I may have atypically presenting chronic paroxysmal Hemicrania (or maybe a mix of CPH and CH) and I am currently on a trial of indomethacin! He said theres some research that indocin also helps CH actually... no harm in giving it.a try when I'm this desperate. He also gave me intranasal DHE as an abortive since the sumatriptan has been less effective. I have definitely researched every damn option.. and I low-key hope its CPH and indomethacin is the answer to it all !! 

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