Medication for Fibromyalgia

[cookiebaker]

This article from 2020 Current and Emerging Pharmacotherapy for Fibromyalgia
doesn't mention nortriptyline, can't see why, and mentions
Reboxetine (only case reports) Esreboxetine (1 trial) Nal trexone (1 trial; if depression) (1 trial) Nabilone, Dronabinol & Memantine (all with conflicting results) Ketamine (1 trial) and the newcomer is...... "NYX-2925" (works in rats).
That's where pharma research is going...

Much more interesting I found the last bit, the conclusion and expert opinion. Saying: there has been great progress in inflammatory and autoimmune disorders, but CNS conditions like fibro are baffling everyone, so experts are going to have to network. They don't think it's likely that there will be much progress in the med types currently used. One hope is to sort and treat patients based on their individual genetic (and pharmacogenetic) characteristics, plus analysis of the pathways bits of the brain connect to one another (connectivity). Another, associated to this connectivity is how the endocannabinoid system works, which is much researched now, and will help develop meds with precisely measured quantities of cannabinoid agents such as THC and CBD(!) Understanding neuroinflammation may also help (see na ltrexone, which is in L D N). Lastly they stress that managing FMS most definitely will always be more than meds, namely tools "ranging from exercise to neurofeedback and all that lie in between. Thus is the art of treating FMS." Yeah.

so, in other words... they have no clue yet.

 

[JayCS]

so, in other words... they have no clue yet.

But, they're thinking... and it's hard for them, not just for us....

 

[cookiebaker]

But, they're thinking... and it's hard for them, not just for us....

I know... it is hard for everyone involved.

 

[FibroMike]

I was tried on gabapentin for a while, and it honestly did not do much for me - and the side effects were enough that I asked to be taken off of it. we tried Nortriptyline, but that gave me tremors... as in could barely keep food on a fork to eat.
My physical med Doc would really like me to try the LDN (low dose naltrexone) but because of my current financial situation, and it not being covered by insurance, I just cant afford to right now.. (no income at all - if it weren't for my long time partner, i would be in very dire straights)

at this time, i am not taking any meds for the fibro.. but i am on an anti-anxiety/anti-depressant (sertraline) and inhalers for my COPD...
also taking other meds for the kidney stone removal.. but those wont be long term.

In all honesty, i am not really a big fan of pills for every little thing... i even have a hard time taking supplements for long.. (i have problems swallowing larger pills) so I take things one day at a time, one minute at a time... sometimes even just one second at a time.. on good days i try to do a few small things, on bad days, i just want to curl up and hide...

Hi Cookie! What type of side effects were you having on Gabapentin?
I've been on Gabapentin (1 pill/300 mg/night) for the past two months - I previously had obviously 24/7 muscle pain, but I'm now at the point that I have some pretty sig muscle pain/tightness in both arms and legs (that started about a 1 1/2 months ago in earnest where I get pretty sore/tight even walking up stairs). I'm strongly considering asking to be taken off of Gabapentin...
He's trying to me on Amitriptyline (25mg/night) and it really hasn't done much and I've been on it for the past 2 weeks. I might be going down the Lyrica/Cymbalta route later this week....

 

[cookiebaker]

What type of side effects were you having on Gabapentin?

oh geez.. has been a while so let me think.... excessive drowsiness was one.. cant say i had any major muscle tightness from it.. for me it was more that it did little for the pain, and slightly overly sleepy.. even tho i was still not sleeping very well overnight. And honestly, with my COPD, i probably should not have been on it to begin with, but hey, i am no doctor.. what do I know.
Nortriptyline gave me tremors..
Cymbalta (duloxetine) made me super sleepy.. as in falling asleep at my desk at the drop of a hat, for a couple of hours.. also caused mild nausea and constipation..
I have chosen not to try the Lyrica (pregabalin) because of some of the same side effects as the others I have tried.. I know, it is supposed to work differently than the others, but just kind of disillusioned with the "usual" meds right now...
That said, I am going to be giving LDN a try in a few weeks.. we shall see.

and just be aware, Lyrica and Cymbalta are two VERY different meds.. not the same thing at all.
I would suggest looking each one up on drugs dot com - go thru what they are, how they work, typical dosage, side effects, the whole works.. go into your decision well informed.

 

[Cutiegirl]

Can you please tell me more about naltrexone? How much do you take and what do you notice?

 

[cookiebaker]

Can you please tell me more about naltrexone? How much do you take and what do you notice?

Not taking it yet.. not for a few more weeks...
Insurance wont cover it so it is an "out of pocket" expense, and I dont have the funds to pay for it yet - not until about the 12th of October, when the first SSDI payment is supposed to land in my bank account.

Once that happens, i have to make a couple of phone calls.. one to get the scrip sent to the compounding pharmacy - yes, it has to be specially compounded to get the correct dosage..,
and the other to the pharmacy to make sure they have payment info and correct address to ship it to me (they are too far away to make picking it up practical - roughly 2 hrs away) .. so there is probably at least a week added for all of that..

Then, once i do start taking it, I am told it can take several weeks to find out if there is any benefit from it.. so looking at probably early November before I even have a clue if it is going to help or not.

 

[JayCS]

That said, I am going to be giving L DN a try in a few weeks.. we shall see.

Ah, praps I should wait..

Can you please tell me more about naltrexone? How much do you take and what do you notice?

I'll probably if at all be staying very low dose, I asked for 1mg. Normal is 4.5mg, which I always guess was just a stab in the dark by the originator, that being slightly less than 10% of the normal 50mg pills. But usually nowadays it's said to start with 1 or 1.5mg and increase slowly to 4.5 and if that doesn't help then slowly up to 9mg max ("under 20%" ).

it can take several weeks to find out if there is any benefit from it

But probably shorter to find out if we tolerate it, ay?

 

[cookiebaker]

But probably shorter to find out if we tolerate it, ay?

yup, that could be as little as a couple of hours.

I am trying to keep an open mind about this whole thing.. but there is also past history that says many of the "common" meds just dont work very well for me, or produce unwanted side effects..

 

[cookiebaker]

Ah, praps I should wait..

lol, is the hamster supposed to be more of a guinea pig?
waiting to find out how I do with it before you try?

 

[JayCS]

lol, is the hamster supposed to be more of a guinea pig?
waiting to find out how I do with it before you try?

Yup, couldn't find a guinea pig... Altho I seem to remember @Auriel had some - but she's such a genius at finding brilliantly expressive emojis, I think she has a treasure trove of them ! Or maybe she just has everything at home and converts them to digital emojis with an app or genie magic.
Yep. Waiting. Just went to the pharmacy. They were a bit stumped. Just said natrexone alone is 120€, plus a very long time compounding - which surprises me, since I encapsulate and have dabbled in "compounding" myself. So they'll be researching how it's done.
Then on the way home I thought - well what if it increases histamine, that wouldn't be funny. But from what I've now re-read, the opposite is the case - it sometimes seems to help MCAS. Which would be encouraging for everyone who usually has problems with meds, as that's very typical for MCAS. And re-read can be good for fatigue too ... so... trialling it'd be worth the 200€ to me. Plus if I need more I could get more capsules.
What I fear most is it disrupting my sleep, as someone said on a thread here, as that's so hard work for me as it is, whilst GI sfx I'm usually able to reverse pretty quickly.

 

[cookiebaker]

oh wow @JayCS , that cost is a bit much..
it is supposed to be cheaper than most other meds, not more.
as an example, the duloxetine was over 350 US dollars for one month, gabapentin was 128 US dollars/mo.. the low dose N will only be about 35-40 US dollars for a month supply - and that is my cost, in total.
granted, insurance covered the cost of the other two so I had no out of pocket expense on those, but it wont cover the compounded naltrexone cost (kind of dumb, really) so i have to pay the entire cost of it... thankfully it is a lot cheaper (here) than the others.

 

[JayCS]

oh wow @JayCS , that cost is a bit much..
it is supposed to be cheaper than most other meds, not more.
as an example, the duloxetine was over 350 US dollars for one month, gabapentin was 128 US dollars/mo.. the low dose N will only be about 35-40 US dollars for a month supply - and that is my cost, in total.
granted, insurance covered the cost of the other two so I had no out of pocket expense on those, but it wont cover the compounded naltrexone cost (kind of dumb, really) so i have to pay the entire cost of it... thankfully it is a lot cheaper (here) than the others.

Interesting comparing this. Looking up quickly on my online pharmacy platform: Normal dose N. comes in 2 products, 110€ or 115€ for 30 or 28 tbl., duloxetine in 159 products, e.g. 98x30mg from 37€ to 81€ (highest 112€), gabapentin in 204 products (100mg) 24€/200, (400mg) 51€/200. So it seems the high cost of N. here has a big upside...!

Apparently the pure substance is better and cheaper than crunching tablets, may take it down to 100€. drugs com says insomnia (8%) usually stops after 1-2 weeks, but can be worked around by taking it in the mornings. Starting 1(.5)mg and adding 0.5 every 7 days or slower, drops may be better than capsules. Neutral overviews of anecdotes seem friendly, but definitely not exuberant. cfspharmacy details dosing etc.

 

[cookiebaker]

yeah, definitely different pricing structures, for sure!

not sure what form my scrip will take yet.. (capsules or liquid) so i guess it is a "wait and see" situation.. kind of anxious to get this whole thing started, but also kind of nervous about starting it, too..
OK... breathe!!