New sleep medication belsomra

[Sushi]

My sleep doctor said he's found that 10 MG (U.S. patients are required to start at this dosage) is not at all effective for his patients and the participants in the clinical trial at his practice and that some people need more than the 20 MG. So you might have to experiment a bit with the dosage.

@heapsreal what doses of Belsomra did you try? My doctor just gave me some to try and said to start at 10 mg. I am a "hard case" with insomnia too, so I doubt that this will be enough.

 

[heapsreal]

@heapsreal what doses of Belsomra did you try? My doctor just gave me some to try and said to start at 10 mg. I am a "hard case" with insomnia too, so I doubt that this will be enough.

20mg is what i used. I dont think i will try higher as it did leave me groggy the next day. If you start low you can always increase it.

Ive only tried it once dose but will try it again this weekend. But i have a feeling people will find it helpful for sleep maintenance rather than sleep initiation. Maybe a low dose like 10mg with a low dose z drug or benzo to help initiate sleep will get the job done??

 

[Sushi]

Maybe a low dose like 10mg with a low dose z drug or benzo to help initiate sleep will get the job done??

Since I usually take a low dose of a benzo my doc said to try 10 mg first + half my usual benzo dose. I just swallowed it, so we'll see...

 

[heapsreal]

Since I usually take a low dose of a benzo my doc said to try 10 mg first + half my usual benzo dose. I just swallowed it, so we'll see...

Keep us updated.

 

[perchance dreamer]

@Sushi, if the 10 MG didn't work for you and you still want to try Belsomra, I'd ask for the 15 MG. You can always go up to 20.

I had next-day sedation when I first started with Belsomra, but it went away soon. My doctor told me to go ahead and take the Trazodone I'd been using when I started using Belsomra, but start decreasing the Traz. dosage. This worked for me. Good luck!

 

[Sushi]

@Sushi, if the 10 MG didn't work for you and you still want to try Belsomra, I'd ask for the 15 MG. You can always go up to 20.

I had next-day sedation when I first started with Belsomra, but it went away soon. My doctor told me to go ahead and take the Trazodone I'd been using when I started using Belsomra, but start decreasing the Traz. dosage. This worked for me. Good luck!

The 10 mg + half my usual dose of clonazepam did work! It was strange as I went from totally awake to blotto with no "going to sleep" sensations in between. I am slightly groggy today but then I was quite sleep deprived the day before trying Belsomra, so who knows. Glad to hear that your next day sedation disappeared after a while. My doc only had 20 mg samples yesterday so I cut it. (they don't cut very cleanly though). Thanks for the feedback.

 

[Sushi]

But...Grrr--I don't think I'll be able to use it as it costs about $325 per month! It isn't even on the formulary for my insurance.

 

[perchance dreamer]

I have Cigna, and it's considered a specialty drug. It costs me $40 a month. You might ask your doctor if he can justify it as a specialty drug to see if your insurance would lower the cost.

I don't know if Belsomra is still doing it, but a couple of years ago they offered coupons, which I got from my doctor's office. The coupons were for samples, which I got from the pharmacy, at a greatly lowered cost. My doctor also had some samples at his office and gave me quite a few.

https://www.belsomra.com/savings-coupon/

I know it's frustrating. Insurance companies can be such doo-doo heads. I'm hoping that if I'm wrong and there really is an afterlife that we won't have to deal with insurance in it.

 

[Alvin2]

I'm hoping that if I'm wrong and there really is an afterlife that we won't have to deal with insurance in it.

Maybe this is the afterlife and ME/CFS is the punishment for being serial killers in our before life

 

[Sushi]

You might ask your doctor if he can justify it as a specialty drug to see if your insurance would lower the cost.

The $325 is the price using GoodRx coupons and no insurance. My insurance doesn't even have it on the formulary, meaning that they won't cover it at all. It isn't even a drug that requires pre-authorization--they just don't deal with it.

I don't know if Belsomra is still doing it, but a couple of years ago they offered coupons, which I got from my doctor's office. The coupons were for samples, which I got from the pharmacy, at a greatly lowered cost. My doctor also had some samples at his office and gave me quite a few.

I have coupons from my doc but they can only be used by those with private insurance--not those with Medicare (which is what I have). I have 6 days of samples from my doc then that is it.

 

[Sushi]

I called the insurance company and they submitted a "non-formulary exception request." That means: "Even though this drug isn't on the list of drugs you cover, please consider it." Over to them--they'll let me know. Whee--so much fun!

 

[perchance dreamer]

All this makes me realize how lucky I was to have Xyrem covered all the years I took it. Sometimes it cost me $30, and other years it was $40 a month. The company that owns Xyrem has a patent until 2020, I think, and they charge thousands a month for this drug. They must have deals with the insurance companies to pay lower costs.

Our system is insane.

 

[heapsreal]

But...Grrr--I don't think I'll be able to use it as it costs about $325 per month! It isn't even on the formulary for my insurance.

Wow $325 a month. How do they justify that?? I payed $56 for 30 pills. Now i had to pay full price and no government subsidy at all covering it that i know of. $325 thats rediculous, theres a rort somewhere.

 

[geraldt52]

As I said earlier, Belsomra was really a bust for me, but I did learn a few things over more than a year of messing around with it that may help someone else.

First, the cost for 20 mg tablets is about the same as 10 mg tablets so it's best (financially) to get a Rx for the largest tablets possible and cut them.

Second, the manufacturer wanted to offer much higher dosing but the FDA disallowed it because side effects got much worse at higher doses. The manufacturer knew that 10 mg didn't usually work.

Third, my side effects got much worse with dose and repeated use, and became untenable at 20 mg. I actually once tried 25 mg and it was still only marginally effective for sleep. The side effects are sneaky, so don't ignore new symptoms or worsening of old symptoms.

I had high hopes, and would have found some way to pay the $9 a tablet for some sleep, but in the end it was useless for me.

 

[Sushi]

The side effects are sneaky, so don't ignore new symptoms or worsening of old symptoms.

What side-effects did you have?

 

[Alvin2]

the manufacturer wanted to offer much higher dosing but the FDA disallowed it because side effects got much worse at higher doses

can you elaborate

 

[heapsreal]

Experiment 2 tonight in another 4 or 5 hrs. I plan to use lyrica again with belsomra but add non benzo med/s to help initiate sleep.

Tizanadine i have found helpful to put me back to sleep if i have woken up at 3am etc and it has a very short half life. Ive also on the odd occassion when i have really needed an afternoon nap taken tiz on its own and ive slept and hr or two. Plus will take melatonin. I have thought of adding an antihistamine but will leave it for another time. If all else fails i will add a low dose of zopiclone.

Id really like a no benzo way of good sleep as it would be a good way to reduce benzo tolerance.

I can remember the first time i used stilnox after horrible sleep and insomnia in the early days of cfsme, half of a stilnox put me out very quickly and i slept very well throughout the night and woke with no hangover. It made a big difference. Nice to get back to something similar.

 

[geraldt52]

What side-effects did you have?

Mostly the usual sleep med stuff of feeling drugged, sluggish, difficulty in concentration, etc. The odd one that ended the experiment was breaking out in minor hives/rashes and serious itching almost exactly 16 hours after taking it...truly odd for an "allergic" reaction. After realizing what must be happening I tested it four more times...it was the Belsomra for certain. By the time I quit it I had pretty well realized that it wasn't effective enough to be that useful anyway...certainly not at $9 a tablet.

 

[geraldt52]

can you elaborate

I can't point you to the source, but there was a lot of discussion on the internet right after Belsomra was first introduced. People were trying higher than recommended doses, because it didn't work at prescribed doses. Apparently the FDA trials included doses up to 40 mg, which were much more effective, but too prone to side effects for the FDA to allow it. Which side effects, I don't know. All hearsay to me, but definitely in line with my own experience with it. At 10 mg I may as well have taken a sugar pill, at 25 mg I was a zombie (and still didn't really sleep all that well).

 

[Alvin2]

I can't point you to the source, but there was a lot of discussion on the internet right after Belsomra was first introduced. People were trying higher than recommended doses, because it didn't work at prescribed doses. Apparently the FDA trials included doses up to 40 mg, which were much more effective, but too prone to side effects for the FDA to allow it. Which side effects, I don't know. All hearsay to me, but definitely in line with my own experience with it. At 10 mg I may as well have taken a sugar pill, at 25 mg I was a zombie (and still didn't really sleep all that well).

I'm not at all surprised it does not work well since Orexin doesn't cause wakefulness.
I'm assuming the higher doses completely antagonize Orexin so the zombiness is in essence giving you the wakefulness of a narcoleptic until the drug wears off