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Emgality (Read 1737 times)
aceserve
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Emgality
Apr 26th, 2021 at 12:41pm
 
Hello Everyone,
I was at the pharmacy, getting a refill of Sumatriptan since I am in a CH cycle. A cycle, which comes every 1.5 to 3 years and lasts a month, had begun a week earlier, with around four attacks every 24-hour period.
The pharmacist saw how much of the med I was getting and says "You should try a preventative medication."
I asked her what kind did she mean? She said Emgality. I had never heard of it before. My doctor had never mentioned it.
I went to my doctor, and he prescribed 300 mg of it, coming in three pre-loaded syringes. It is supposed to be used at the start of a CH cycle and once a month thereafter if the cycle isn't over. He said some patients had said it cost an arm and a leg. I wonder why he didn't tell me about the medicine, but I am very glad the pharmacist did.
Under my insurance, it was $100. A different pharmacist whom I collected it from said he believed that with no insurance it is around $1,200.
I injected all three, as instructed. This was on Friday afternoon. Friday night I had a mild attack. Saturday evening, the same. The only one in 24 hours, instead of four. last night, I had zero attacks.
I hope to God this effectiveness continues. If it does, this is a miracle drug, in my case. It doesn't work for everyone. The product's web site says "Emgality 300 mg cut weekly cluster headache attacks in half or more for a majority of people. 71% of people had their weekly attacks cut in half or more vs 53% of people taking placebo at Week 3."
I plugged in Emgality in the search window, and didn't get any hits, so I wanted to share this in case it hasn't been discussed already.
Regards,
Ace
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Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
 
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aceserve
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Re: Emgality
Reply #1 - Apr 26th, 2021 at 12:41pm
 
Here is the web page: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
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Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
 
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AussieBrian
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Re: Emgality
Reply #2 - Apr 26th, 2021 at 8:27pm
 
Aceserve,  if you scroll down the main Medications board that this thread is on there's another couple of threads on just this subject.  Not a lot of info on them,  I admit,  but it means word is getting around.

Great to hear you're having some good results and please keep us updated because this sort of information is very important to our community as a whole.
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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aceserve
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Re: Emgality
Reply #3 - Apr 27th, 2021 at 11:16am
 
Thanks, AussieBrian.
Update: Last night I was woken up by a CH coming on. During this cycle, the first nightly one usually hits around 11:30 pm. This was 11:45. I did the Sumatriptan nasal spray instead of the injection. The CH did not come on as strong and rapidly as it normally does, which I think is an additional benefit of Emgality in my case. Fifteen minutes after taking the spray the tide turned and I was PF. That was one CH incident in 24 hours, down from four/24 hrs. before Emgality.
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Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
 
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aceserve
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Re: Emgality
Reply #4 - May 1st, 2021 at 1:39pm
 
Update: I had three cluster headache attacks last night, having been woken up by them at 12:30 am, 3:30 am and 8 am. The Emgality might not be so effective anymore.  Sad
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Ahhh, what a relief to be pain free. Hang in there. Good times are comin'.
 
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Racer1_NC
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Re: Emgality
Reply #5 - May 2nd, 2021 at 9:38am
 
It may be helping...there are ups and downs to everything. Fingers crossed...
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“We see what we believe, not the other way around." — Varga
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Nicolás
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Re: Emgality
Reply #6 - Sep 10th, 2021 at 2:21am
 
Hi Aceserve,

After these months, how did the beast behaved?
Did you injected yourself again during these months?

Kind regards,
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icantdance
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Re: Emgality
Reply #7 - Nov 5th, 2021 at 6:41pm
 
Hello, 21 year episodic sufferer here. I am a rare case that has not found anything that works as an abortive or preventative so far. I tend to suffer from most of the side effects of meds. No, O2 does not work for me regardless of mask and flow. I am allergic to triptans and blood pressure meds are a no go because I have bradycardia (slow heart rate and low normal blood pressure). Prednisone at massive doses has slowed cycles for me, but the side effects make that no longer an option and as soon as I taper, they are worse. In fact, the 100mg/day dose made me diabetic. Yes, I am on Batch's Vit D protocol to the letter!

I took the loading dose of Emgality three weeks ago. The injections burned and I experienced fever like symptoms for several hours, including achey joints and what felt like a rash on my neck and chest, except there was not a visible rash. I also experienced a feeling of being closed in.

There has so far been zero positive impact on my cycle. I am due for the next injection in 10 days or so, but don't have any hope that it will help. I am still at 9 hits a day 20 min to 2.5 hours in duration with all but 1 hit at k7 or higher for 3 months now. My cycles are weird. Every 4 years I have a cycle that goes 8-12 months. This is one of those. Other years it is 2-3 months but never above shadows-k2.

Anyway, just thought I would give my experience with Emgality thus far.
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« Last Edit: Nov 5th, 2021 at 6:43pm by icantdance »  
 
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AussieBrian
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Re: Emgality
Reply #8 - Nov 7th, 2021 at 1:07am
 
Purely out of interest,  Icantdance,  are you going to get your next Emgality shot?
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My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
 
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icantdance
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Re: Emgality
Reply #9 - Nov 30th, 2021 at 10:39pm
 
I did get my second shot. I am suffering the same side effects: fever, rash, aches and pains along with digestive issues. I also hit a short prednisone course. Hits went down to 3 a day for a few days and have since gone up to five 2 days after I stopped prednisone. Still at five hits day 5 after prednisone. Was at 7 before. So, is it the prednisone or emgality? Who knows and I don't know what to expect going forward. I do not believe the emgality has had any effect.

I was not going to take second shot, but I am In a strange spot with my neuro. He is new, have seen him 2x. He also did a good job of reviewing my history to know what I have tried before. The issue is that I am navigating FMLA with my work and he is the treating doc. It would have been in a bad thing if I refused a treatment.
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outwitt
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Re: Emgality
Reply #10 - Jan 21st, 2022 at 12:50pm
 
Nutshell:  35yr eCH.  Age 72.  Thought you receive a "Get Out of Jail" card at my age.   Apparently not.

HA returned.......nevertheless.....that being said:

Tried Emgality..........two courses.......... ineffectual  Embarrassed

Costly experiment.

Longing for my methysergide..........
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Batch
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Re: Emgality
Reply #11 - Feb 21st, 2022 at 2:28pm
 
Hey Outwitt,

Give the anti-inflammatory regimen CH and MH preventative treatment protocol a try.  You can download this vitamin D3 treatment protocol from the following VitaminDWiki.com link.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Readers of my webpage at VitaminDWiki.com have downloaded 76,563 copies of this treatment protocol since I published it there 21 Jan 2017. 

I'm 77 and I've been CH pain free since I developed and started taking this treatment protocol in October of 2010.  It works.

Take care and please keep us posted.

V/R, Batch
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You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
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The Thinker
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Re: Emgality / mAbs
Reply #12 - May 25th, 2022 at 10:59pm
 
Hello all.

I am sharing a podcast interview I recently filmed with Pete Batcheller aka Batch. In this podcast we discuss mAbs, monoclonal antibody therapies such as Emgality.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

We discuss what mAbs are and what synergies they have with the Vitamin D Anti Inflammatory Regimen in respect of CGRP, calcitonin gene related peptide.

I take the opportunity to ask Pete lots of other questions in regards these therapies and I hope the information may be of value if you're interested in learning more about either topics.
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DebDraws
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Re: Emgality
Reply #13 - May 28th, 2022 at 7:41am
 
Thank you
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