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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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Hope the no headache today is a good sign -- and thank for posting.  Getting a solid perspective on how valuable Emgality might be seems important.

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I asked him about the oxygen and he said that it was hard to get. I am going to try to get welders oxygen on my own. 

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MD gave me 3 injections of 120 mg to start off and then one every month after that. I just took the second one and he told me to take the last one in the morning. I live in Texas. 

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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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What is Emgality? I've never heard of it. If it works, awesome! 

Are we still living in the dark ages when people can't get O2 for clusters? *rolls eyes*

Mox

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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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..yeah that does sound familiar...but if intractable I would want to at least try before they drill a hole in my head (been there) ...any chronics out there who have?

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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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Hate it when you find something that works, then your body adapts and it stops working.

What are the side effects of Emgality?

Mox

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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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I am not sure how much it will be. I still haven’t gotten around to sign up for the free 12 month program. I still get 1 headache a day but it’s very manageable. 

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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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11 hours ago, MoxieGirl said:

Hate it when you find something that works, then your body adapts and it stops working.

What are the side effects of Emgality?

Mox

I just checked pricing through my insurance's Rx coverage-- if the med is approved as other treatments have failed it will be $0! no out of pocket cost for 300mg emgality each month :) great news! 

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12 hours ago, MoxieGirl said:

Hate it when you find something that works, then your body adapts and it stops working.

What are the side effects of Emgality?

Mox

I have had zero side effects besides injection site pain/irritation that lasts maybe one day... I believe since its a CGRP inhibitor the side effects are few... it's not really like adding tons of chemicals to your body, but inhibiting the absorption of some. 

 

 

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7 hours ago, EyecePick said:

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 !! 

I agree with you that hope is always low-key, but I will hope along with you.

In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking?  You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine.

Have you looked at octreotide as an abortive?  I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it.  But then again, maybe it'll turn out that you do have CPH.

(Also reminding you again about the D3 regimen.)

Fingers and toes crossed for you.

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8 hours ago, CHfather said:

I agree with you that hope is always low-key, but I will hope along with you.

In what I have read about Indomethacin, recommended dosing is all over the place in terms of both quantity and duration. Do you mind saying how much you're taking?  You're taking it along with something to protect the stomach lining (a proton pump inhibitor or something else), I imagine.

Have you looked at octreotide as an abortive?  I've seen it listed many places as an alternative when triptans aren't working, but I don't think I've seen anyone here who actually has used it.  But then again, maybe it'll turn out that you do have CPH.

(Also reminding you again about the D3 regimen.)

Fingers and toes crossed for you.

I am on 25mg TID for 10 days, if no improvement/minimal improvement I will bump up to 50mg TID. I am currently on DHE intranasal as a new abortive. I have also heard of octreotide... haven't explored that option yet. Yes, I am on PPI currently but with 25mgs taken with food I don't know if I would need a PPI long term (they have long-term use risks of their own). No drinking alcohol is huge! (I gave up alcohol anyways.. it's my biggest trigger). 

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@Brain on fire I haven’t checked but I will definitely check now since I am on break. Emgality is working okay. It has definitely reduced the pain to manageable levels. The only side effect has been some itching but I’m not sure if it’s from emgality or dry skin. I am still using maxalt has an abortive. I think My cycle is ending but I am not sure yet. Oh btw I have ordered the d3 regimen and can’t wait to try it. This has been the last time that I get clusters. From here on out I will peeper has best as I can. 

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