I started Besremi on January 28. In a previous post, I detailed an encouraging CBC after only six weeks. I have had no side effects until....migraines. I have had migraines my whole life, so this isn't new for me, but I had a six-day streak of unrelenting migraines. That is highly unusual. And they were different—unique vision issues on the onset, more head pain for hours, etc.
According to the label, 39% of patients had headache on the Besremi, so it is possible that it is related to the drug. But maybe not.
The universal truth that we must advocate for ourselves came into play again for me while dealing with this terrible situation. The amazing Hunter5582 recommend I look into CGRP inhibitors for migraines. My GP wasn't able to prescribe them, and I wasn't able to see a neurologist within our heathcare provider until June due to a backlog from COVID.
I took action: I confirmed with my insurance which of these classes of drugs they'd pay for and found an online neurologist, and used an app to book a virtual appt. (I used neurahealth.co. Dr. Beck was outstanding. )
I got my first monthly shot of Emgality on March 10. So far so good. I haven't had a migraine since the first monthly shot. I also have Nurtec for any breakthrough migraines. I will also get Botox this month which I've done for 12 years.
This is a MPN Community but I thought sharing my experience with migraines that could be/(who knows) related to Besremi would help someone. I'm not thrilled I now will have to have my husband give me three shots a month (two Besremi, one Emgality) but staying healthy and migraine free makes it worth it.
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Elizka
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Hi. So glad you’ve found help with your migraines. I’m hoping my doc might prescribe Ropeg but then I saw about the increased number of migraines and reconsidered. It’s too bad though that a drug that might stop the progression could have unbearable side effects. I hope you don’t mind if I ask you lots of questions- I’m hopeful some of the info might help me. I’m curious how much you have to pay for Nurtec if you don’t mind sharing. I recently started using it a few months ago and was so happy to finally find something that worked. Unfortunately now I’m told it will cost $500 for the 8 pack of pills. I’ve been miserable without it. Can you please tell me why you need Nurtec, Botox & CGRP for your migraines? Does Botox not work well enough? Or Nurtec? Also, do you know why your GP wouldn’t prescribe CGRP? I’ve never heard of this drug. Is it not normally used for migraines? I appreciate any help you can provide. Thanks, Katie
I'm not going to stop using Besremi. I think the benefits are too significant, even if it has caused more migraines for me. And, honestly, I don't know for sure that Besremi was the culprit.
For now, things are back to normal, and I'm hoping it stays that way.
Why do I now use all three? I've gotten Botox injections for many years both for migraine prevention and for cosmetic reasons. I feel less tension in my forehead, have less light sensitivity and have fewer migraines when I get Botox every four months.
When I first started using Botox, I had it injected in the back of my neck as well as my forehead and under the eyes. After I was dx with PV, I stopped getting Botox in the back of my neck; I think my hematocrit controlled with phlebotomies lowered the frequency of migraines. I experienced fewer migraines with the combined treatment for some time.
Botox alone didn't completely stop migraines. I've always had to use a migraine medication 2-4 times a month when I'd get one.
I have my second prescription for Nurtec, and I like it a lot. It provides rapid relief for me. That said, I haven't had to use it since I got my first Emgality shot. All three are part of the arsenal for migraine prevention, along with good sleep, meditation, working out, and keeping stress at a decent level.
As far as costs, my insurance pays for Nurtec. Sorry, I don't know where to find the meds less than $500. I hope you can find a solution.
Emgality is also paid for by insurance, but I do have a $20 copay. Emgality does have a saving program to help with costs. enrollment.emgality.com/cop...
Hunter5585 shared Emgality costs with me awhile back, if out of pocket for you:
Emgality:
Manufacturer/Pricing .
Manufacturer: Eli Lilly and Co.
DEA/FDA: Rx
Approximate Retail Price
from goodrx.com/emgality
subcutaneous solution:
120 mg/mL (1 pen): $650.00
subcutaneous solution:
100 mg/mL (3 syringe): $1,610.00
120 mg/mL (1 syringe): $650.00
You may also be able to give them a call for help and information.
If you have additional questions, call your doctor or the Emgality Answers Center at 1-833-EMGALITY (1-833-364-2548).
Nurtec is one of the CGRP inhibitors that comes in an oral form. It is often used for occasional or breakthrough migraines. Emgality is also a CGRP inhibitor. It is a monthly injectable that prevents migraines. The two are used in combination for people with more serious levels of migraine.
The issue with getting the meds approved by your insurance is whether they are on your formulary. On my plan (medicare Part D managed by Cigna) Ajovy (another injectable) is the only CGRP inhibitor on the formulary. i was able to get Ubrelvy (another oral) CGRP inhibitor approved as a non-formulary med. This can be done on many plans, but you have to know how to go about doing it.
Here is a bit more about CGRP inhibitors if you are interested. There is plenty more out there about this topic.
Thanks. I have Cigna drug insurance now that they bought out Express Scripts. NURTEC isn’t on their formulary and my doc’s nurse isn’t competent at explaining why I should get an exception. She’s too new to know the tricks. Because I’m on Medicare with a Part D plan the Nurtec deals won’t work. Private health insurance yes just not government. Is Ubrelvy as effective as Nurtec?
Ubrelvy is as effective as Nurtec. It is an oral rather than a sublingual so it may take longer to kick in. I find it works in 30 - 60 minutes. ubrelvy is not on the formulary either. I had to write my own appeal to get it approved. The medical assistant did not know how to structure it to get it approved.
On my Cigna plan there are two CGRP inhibitors on the formulary, Aimovig and Ajovy. Both age Drug Tier 2. They are both monthly injectables. If I was having more frequent migraines, I would absolutely opt for one of those options.
Regarding filing an appeal, you have to understand the plan rules that drive decision making. You can request these by contacting Cigna customer service. They may refer you over to the appeals department (which is at Express Scripts). Express Scripts is both the approval request processing company and the on-line pharmacy owned by Cigna. If you have a decent Part D plan there should be a process for approval of a non-formulary medication provided it is on a medicare excluded class medication (which does not apply to CGRP inhibitors).
My plan is pretty typical. In order to get a non-formulary approved you must have tried two formulary drug options and they were not effective or had unacceptable side effects. Or - there must be a medical contraindication to the medications on the formulary list. It was based on the latter that I wrote my appeal for Ubrelvy and got it approved.
I only get occasional acephalgic visual migraines, which is why I wanted to opt for episodic treatment. If my appeal had not worked, I would have opted for a monthly CGRP injectable.
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