Effective pain med on horizon?

[30 plus years]

Has anyone been reading about a new drug called suzetrigine, which supposedly is nonaddictive and blocks pain signals before they reach the brain?

 

[sunkacola]

I have heard about this and read just a little bit.

This medication is designed for use for acute pain, which means immediate and short term pain, lasting less than three months, usually associated with recovery from surgery or trauma.

Since one of the defining attributes of fibromyalgia is that the pain has lasted longer than three months and is ongoing, it is chronic pain, and therefore that medication will not be recommended for fibro patients.

 

[Ian waxman]

I have heard about this and read just a little bit.

This medication is designed for use for acute pain, which means immediate and short term pain, lasting less than three months, usually associated with recovery from surgery or trauma.

Since one of the defining attributes of fibromyalgia is that the pain has lasted longer than three months and is ongoing, it is chronic pain, and therefore that medication will not be recommended for fibro patients.

This drug is designed for long term pain management.i think it’s been created to try to kerb the opioid crisis in America.so I personally think it would be worth trying if you are in long term pain like me.i’m on fentanyl 60mcg which is quite a high dose but it does ease my agonising pain.if the docs give it the thumbs up then i would try it.

 

[sunkacola]

This drug is designed for long term pain management.i think it’s been created to try to kerb the opioid crisis in America.so I personally think it would be worth trying if you are in long term pain like me.i’m on fentanyl 60mcg which is quite a high dose but it does ease my agonising pain.if the docs give it the thumbs up then i would try it.

Where did you read that suzetrigine is designed for long-term pain management?
Everything I read said it was specifically not for that, but only for acute pain management.
I'd be interested in your source of information on this. Thanks.

 

[Ian waxman]

Where did you read that suzetrigine is designed for long-term pain management?
Everything I read said it was specifically not for that, but only for acute pain management.
I'd be interested in your source of information on this. Thanks.

Just googled it and clicked on a link and it said it’s designed for acute pain which can be long term.they’ve not said it’s manufactured for fybro but if it’s a long term painkiller we’ll see

 

[sunkacola]

Just googled it and clicked on a link and it said it’s designed for acute pain which can be long term.they’ve not said it’s manufactured for fybro but if it’s a long term painkiller we’ll see

That's the thing then....it is about word usage.

The word "acute" is used in medical terminology to mean short term pain, (or disease, or disorder), as opposed to long term. In other words, it doesn't mean "strong" or "severe" or some other description of what the pain is like, but rather used to indicate an immediate and short term thing.
People say they have "acute pain", and they are meaning it's sharp or strong. But the medical profession (at least in the US) uses the word differently. So when a medical website says it is for acute pain they are not using "acute" to mean serious or severe pain, they are using to mean short term pain rather than long term.

However, once a medication is actually approved for use by the public, sometimes it is discovered that it is useful for things it was not initially designed for. In this case, we shall have to wait and see. Maybe it will turn out to be something that helps fibro people, you never know. Several meds that are used for treatment of fibromyalgia were actually developed to treat something else. Lyrica, for instance, was developed to treat epilepsy, but is now often prescribed for fibro.

 

[ckahern]

I would like to know more about this new medication! I am suffering with terrible side effects from taking Suboxone for 13 yrs. I have lost so many teeth and have spent a fortune on dental work! My digestive system is a wreck.I was diagnosed with chronic respiratory failure which actually turned out to be CO2 buildup in my lungs because of shallow breathing due to Suboxone. I keep telling them I want to get off of it and they say there is no other alternative. Grrrr

 

[sunkacola]

I would like to know more about this new medication! I am suffering with terrible side effects from taking Suboxone for 13 yrs. I have lost so many teeth and have spent a fortune on dental work! My digestive system is a wreck.I was diagnosed with chronic respiratory failure which actually turned out to be CO2 buildup in my lungs because of shallow breathing due to Suboxone. I keep telling them I want to get off of it and they say there is no other alternative. Grrrr

This medication has not yet been approved for use by patients, and when it is it will not be likely to be readily available for people like us, so it's probably best not to get excited about it.

You can find out more about it if you want to just by using a search engine.

 

[Dezign]

So very sorry. I have been on an
Opioid for over 10 years as I also have psoriatic arthritis. 30 years! I feel so fed up. The first medication, Methotrexate for 16 years. The last 4 years it gradually stopped working. Only two biologics worked for 8 months. I retried Methotrexate several times. I’m not allergic. Was allergic to other biologics too. Ended up in ER once. Thought I was dying. Have likely had fibro for 8 or more years. Now it’s quite bad. Or at least I think it’s the fibromyalgia. Muscle pain in upper arms, upper back, tendonitis in elbows, swollen painful wrists, hands 2011. e 2911. and finger pain, neck, and some in legs. It stinks! I have been so discouraged. I had a breakthrough yesterday. Realized by sleeping too much it worsened things. Sleeping too much initially due to pain then depression as well. I need to move. But I need to do very gently. Thankfully walking can be ok. Depends on day. Rainy weather is incapacitating. I’m 66. Been on disability since 2011. Lost my career. I decided yesterday I’m going to rebuild my life. I’m looking at a few newer alternative treatments. Spent my entire retirement on natural treatments, none worked even acupuncture. Anyway, I know I’m not permitted to mention alternative treatments but the traditional medical system has failed me. I will need to fundraise for money. Otherwise I will keep deteriorating. I’d would rather not live if that is the case. I believe it’s about quality of life. Not being dramatic. Just suffered so much! Bye for now.

 

[sunkacola]

Anyway, I know I’m not permitted to mention alternative treatments but the traditional medical system has failed me.

I don't know why you think you are not permitted to mention alternative treatments.
We even have a whole section for discussing that, although you can mention them in any section you want.

The only things not permitted with regard to mentioning such things are outside links (that is, any link to any place on the internet that is not within this forum), and advertising. If you want to say that you use a certain brand of a supplement or something like that, that is OK too, just as long as you don't link to a website in your post and you are not advertising it for your own gain.

We are all aware that what helps one person may or may not help another, so we like to caution people against saying in a post that something "cures" fibromyalgia, or will work for everyone, since that doesn't appear to be backed by fact. There's no magical medicine. But members are encouraged to write about what is working for them, whatever it is, (as long as it is legal!).

 

[waqas343]

very informative

 

[johnsalmon]

from taking Suboxone for 13 yrs

why are you taking it - it is not a pain treatment and has serve side effects

 

[sunkacola]

why are you taking it - it is not a pain treatment and has serve side effects

For many years in the USA suboxone was or has been prescribed for pain. It is only somewhat more recently that it has been prescribed to treat opioid addiction, and is generally no longer given to patients to treat pain.

 

[Nifty2024]

I have mentioned this previously and as a fibro sufferer it is helping me.
I was diagnosed with fibro in late 2022. I had someone suggest I try biofullerene c60 in December 2022, after researching and seeing a review from someone that was on very strong medication for fibro to be nearly drug free convinced me to give it a try. It took 2 weeks before I noticed a difference and believe it can vary for everyone, but it definitely made a difference. To the extent where I’m taking nothing else, other than Vitamins, mainly D3, K2-mk7, & magnesium but no pain medication. I’m able to do most things now. Not having any flareups other than one last April when I got sick in Bali, this seemed to trigger it. Aside from this I would definitely recommend c60 or at least trying it.
I will have been taking for 2 years this December. Tried CBD gummies for a short period but I’m getting no bad side effects from C60.

Before starting c60 I had a pretty bad year in 2022, couldn’t throw a ball for our dog, struggled with working part time and now I’m doing it with little issues. I found flareups would happen easily prior to taking this. Anyway has worked well for me, it’s not found in pharmacy’s and my GP and Rheumatologist I went to hadn’t even heard of it. I can tell it’s still there, of late I find on long flights I get bottom pain if I sit for too long and have had some tingling nerve pain in my feet, but nothing unbearable since being on biofullerene c60. What it hasn’t helped with is fatigue and brain fog, still looking for solutions for these. Anyway for pain I would highly recommend and the number of drops varies depending on your weight.
As an update I did have a flare up a week ago, my GP convinced me to have a shingles vaccine, clearly my body didn’t like it, even a week later I feel some affects. I feel now the problem what ever it is is still there but just with less pain. I think without anything I think I would be basically bed ridden, like everyone who suffers hopefully someone comes up with a cure soon. Hope this can help someone.

 

[ckahern]

When I was diagnosed in 1994 the doctor I went to had done a research paper on Fibromyalgia, but that was before it was so prevalent and he gave me Loracet for the pain and so began my rollercoaster with opioids. I ended up having to go to rehab to get off the opioids, but I was still suffering with pain to the point that I had to stop working as a hairstylist. That is when I was given Suboxone.