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Emaglity (Read 2228 times)
wsnurse
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Emaglity
Oct 27th, 2020 at 3:13pm
 
Been almost cluster free since I started Emaglity. I was a test subject at STANFORD UNIVERSITY. SO I started 3 years ago. Still on D3 10,000 a Day. Multi vitamin,  magnesium
Verapamil 360mg. But I had a big CH it was a kip 10. 3 HOURS... Over all its been great! Aftee being chronic 12 years. Question After I take the Emaglity The next day i have severe muscle and joint aches feel like i got ran over by a truck.

Anyone feel the same?
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AussieBrian
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Re: Emaglity
Reply #1 - Oct 27th, 2020 at 9:18pm
 
Regarding the joint pain etc,  this article suggests discussing it with your doctor.

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Hope it helps,

Brian.
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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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Hoppy
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Re: Emaglity
Reply #2 - Oct 29th, 2020 at 12:34am
 
Emgality has now been approved for use here down under, but it's not listed on the PBS as of yet.

Cheers, Hoppy
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Joshua
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Re: Emaglity
Reply #3 - Nov 2nd, 2020 at 9:17am
 
*EMGALITY UPDATE*
I took Emgality in 2 monthly doses last September & October.

Almost 1 year to the day from taking the second Emgality monthly dose, and getting totally pain free for a year, I got a cluster headache last week.

I happened to have my Emgality prescription in the fridge from last year (unexpired) and took it early last week.

Since then I've gotten 1 additional CH, and some shadows, but it hasn't taken hold yet like it usually does at the beginning of the cycle, which is usually hits 3 - 6X a day.

More to come.
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Joshua
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Re: Emaglity
Reply #4 - Nov 10th, 2020 at 12:48pm
 
Update 1 week post Emgality - no additional headaches.
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dtruett
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Re: Emaglity
Reply #5 - Dec 18th, 2020 at 7:36pm
 
Can I ask how much people are paying for this. I have a Medicare quote of $566/mo. Worth it if it aborts a cycle, but a lot of money for this retiree.
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Joshua
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Re: Emaglity
Reply #6 - Jan 11th, 2021 at 11:18am
 
Mine was covered under insurance, so my copay was very low, definitely less than $60.

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General_Cluster
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Re: Emaglity
Reply #7 - Aug 20th, 2021 at 12:53am
 
I am on Emgality 300 mg subQ per month. I then went 1.5 years without a cluster. Now after missing one month the headaches are back but not as severe. I take verapamil 240 mg three times a day during cluster phase and use sumatriptan 6 mg subQ with each headache at 5:45 am, 6:15 pm, 10:30 pm, and 2:40 am. Prior to the Emgality I had 2 cluster phases per year that lasted about 8 weeks. I no longer contemplate suicide since I started the Emgality.  I also take magnesium and vitamin D3. I like wine but i CANNOT touch it during a cluster phase. Emgality at 300 mg per month is FDA approved for Cluster headache indication. No other migraine medication has this indication.
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Batch
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Re: Emaglity
Reply #8 - Aug 27th, 2021 at 6:36am
 
Hey General Cluster,

How much vitamin D3 are you taking and have you had a recent lab test of your 25(OH)D3 serum concentration?

I've spent over 10 years providing information outreach on the anti-inflammatory regimen to help thousands of CHers control their CH. I've found that when CHers don't respond to this regimen they're usually not taking enough vitamin D3 to elevate their 25(OH)D3 serum concentration high enough to experience a therapeutic effect with the cessation of their CH. 

The best way of determining this is the case is with lab tests for 25(OH)D3.  The following normal distribution curves for baseline and 30 day 25(OH)D3 serum concentrations of CHers who respond to this treatment protocol, illustrates they have a mean 25(OH)D3 serum concentration of 80 ng/mL within the first 30 days on this treatment protocol.
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The important take away from this chart is half of these CHers required a 25(OH)D3 serum concentration greater than 80 ng/mL with some as high as 180 ng/mL in order to experience a cessation of their CH.  Over the last 19 months since these graphics were posted, we've had several CHers report 25(OH)D3 serum concentrations over 250 ng/mL to achieve or maintain a CH pain free status.  I'm one of them as you'll see in the 4-year chart of my labs for 25(OH)D3, calcium and PTH.

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It's also important to note that even with 25(OH)D3 serum concentrations as high as mine at 277 ng/mL, my calcium serum concentration has remained within its normal reference range so no hypercalcemia, a.k.a., vitamin D3 intoxication/toxicity.

We've made a few changes in the type of vitamin D3 used in this treatment protocol.  In 2018 we switched to the Bio-Tech D3-50 50,000 IU water soluble vitamin D3 from the oil-based liquid softgel vitamin D3 formulations.  We did this as the Bio-Tech D3-50 has a higher bioequivalence.   We switched from the vitamin B-50/100 complex to the Methyl Folate + vitamin B complex for the same reason. 

For the last 5 months many of us have added Micro D3, a liquid nano-emulsion of vitamin D3 that has an even higher bioequivalence when taken sublingual.  The new basic anti-inflammatory regimen supplements are illustrated in the following photo of what I take and suggest to other CHers.

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Many of us have found an accelerated vitamin D3 loading schedule taking two (2) of the Bio-Tech D3-50 capsules/day and 0.5 mL/day of the Micro D3 provides 140,000 IU/day of vitamin D3 for a rapid increase in 25(OH)D3 serum concentration between 60 and 70 ng/mL on top of the baseline 25(OH)D3 serum concentration when taken on a 5-Day loading schedule. 

We take this loading dose combination for a max of 5 days then drop back to an initial vitamin D3 maintenance dose of two (2) Bio-Tech D3-50 capsules/week (an average vitamin D3 maintenance dose of 20,000 IU/day)  then see our PCP/GP for labs of our serum 25(OH)D3, calcium and PTH.

The rationale for this new loading schedule is simple.  It elevates 25(OH)D3 a little higher in five days as opposed to the older loading schedule taking 50,000 IU for 12 days.

Take care and please keep us posted.

V/R, Batch
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« Last Edit: Aug 27th, 2021 at 2:17pm by Batch »  

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