Tonmya is a game changer for me!

Posted by Beejenigma @beejenigma, 6 days ago

Just got an RX for the new drug, Tonmya. It is amazing. My sleep has completely changed now. Used to have chronic insomnia. I would take arthritis strength tylenol, 300 mg gaba, 8 mg LDN, 10 mg THC and sometimes even .5 alpraz to go to sleep and I would still not get to sleep for 3 hours. I would frequently wake up around 3! Now I am sleeping within an hour and sleeping until 7 or 8 a.m.! See if you can get an RX for it. I don't know if this is going to last but it is great.

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I am glad Tonmya is helping you. Do you take several pills throughout the day, or just one before bed? If taken during the day, does it make you sleepy?

I'd like to provide some background on Tonmya. The drug is a reformulation of the muscle relaxant cyclobenzaprine (aka Flexeril) done by making it a lower dose that's taken subliminally rather than as a pill you swallow. By reformulating the drug, the drug company can charge lots more money. I did a google search and found: "Tonmya has a wholesale acquisition cost of $1,860 per month for 60 tablets, which will be reduced to $930 for older patients and those with mild liver impairment." The cost of cyclobenzaprine 10 mg can vary, but without insurance, it typically ranges from about $4.77 for a few tablets to around $20 for a 30-tablet supply. When I have a fibre flare, I take a 5mg tablet of cyclobenzaprine before bed and it helps with sleep and pain.

An article by Pradeep Chopra, MD (a Harvard-trained pain medicine specialist with over 25 years of experience treating complex chronic pain and multisystem disorders.) has this Summary: "In summary, sublingual cyclobenzaprine (Tonmya) is essentially a repackaged low‑dose formulation of cyclobenzaprine, marketed as a novel drug through its patented delivery system. Its pharmacokinetic differences are small, its clinical benefit is modest and comparable to existing oral formulations, and its unique adverse effects may outweigh the theoretical advantage of reduced metabolite formation. Clinicians should therefore critically evaluate manufacturer claims and consider whether simple, low‑dose oral cyclobenzaprine would provide equivalent benefit at far lower cost.

In summary, the report concludes that Tonmya’s sublingual delivery offers only minor pharmacokinetic differences compared to oral cyclobenzaprine. Despite claims of reduced metabolite formation, the active metabolite norcyclobenzaprine remains pharmacologically relevant and may contribute to therapeutic effects. The analysis shows that dosing, rather than delivery route, largely explains any variation in drug exposure. It highlights that low-dose oral cyclobenzaprine already achieves similar outcomes and underscores that Tonmya’s modest pain reduction and unique oral adverse effects do not justify its higher cost or novelty. The conclusion advises clinicians to weigh claims critically and consider low-dose oral formulations as cost-effective alternatives."

Just FYI for those without good drug insurance.

REPLY
Profile picture for daisy17 @daisy17

I am glad Tonmya is helping you. Do you take several pills throughout the day, or just one before bed? If taken during the day, does it make you sleepy?

I'd like to provide some background on Tonmya. The drug is a reformulation of the muscle relaxant cyclobenzaprine (aka Flexeril) done by making it a lower dose that's taken subliminally rather than as a pill you swallow. By reformulating the drug, the drug company can charge lots more money. I did a google search and found: "Tonmya has a wholesale acquisition cost of $1,860 per month for 60 tablets, which will be reduced to $930 for older patients and those with mild liver impairment." The cost of cyclobenzaprine 10 mg can vary, but without insurance, it typically ranges from about $4.77 for a few tablets to around $20 for a 30-tablet supply. When I have a fibre flare, I take a 5mg tablet of cyclobenzaprine before bed and it helps with sleep and pain.

An article by Pradeep Chopra, MD (a Harvard-trained pain medicine specialist with over 25 years of experience treating complex chronic pain and multisystem disorders.) has this Summary: "In summary, sublingual cyclobenzaprine (Tonmya) is essentially a repackaged low‑dose formulation of cyclobenzaprine, marketed as a novel drug through its patented delivery system. Its pharmacokinetic differences are small, its clinical benefit is modest and comparable to existing oral formulations, and its unique adverse effects may outweigh the theoretical advantage of reduced metabolite formation. Clinicians should therefore critically evaluate manufacturer claims and consider whether simple, low‑dose oral cyclobenzaprine would provide equivalent benefit at far lower cost.

In summary, the report concludes that Tonmya’s sublingual delivery offers only minor pharmacokinetic differences compared to oral cyclobenzaprine. Despite claims of reduced metabolite formation, the active metabolite norcyclobenzaprine remains pharmacologically relevant and may contribute to therapeutic effects. The analysis shows that dosing, rather than delivery route, largely explains any variation in drug exposure. It highlights that low-dose oral cyclobenzaprine already achieves similar outcomes and underscores that Tonmya’s modest pain reduction and unique oral adverse effects do not justify its higher cost or novelty. The conclusion advises clinicians to weigh claims critically and consider low-dose oral formulations as cost-effective alternatives."

Just FYI for those without good drug insurance.

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@daisy17 I've taken cyclobenzaprine and every other drug ever used for fibro. My best results have been with plain old Tylenol. It doesn't have side effects that put me in the hospital or make me sick when used as prescribed. I can commiserate with you since I was diagnosed in 1991 and nothing has really been satisfactory. Hope this keeps working for you.

REPLY
Profile picture for bunstuffer @bunstuffer

@daisy17 I've taken cyclobenzaprine and every other drug ever used for fibro. My best results have been with plain old Tylenol. It doesn't have side effects that put me in the hospital or make me sick when used as prescribed. I can commiserate with you since I was diagnosed in 1991 and nothing has really been satisfactory. Hope this keeps working for you.

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@bunstuffer Same with me. Since 1972. But... as I said, this Tonmya is a different form of cyclobenzaprine. It is NORcyclobenzaprine and it does not go through your digestive system. Game changer.

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Profile picture for Beejenigma @beejenigma

@bunstuffer Same with me. Since 1972. But... as I said, this Tonmya is a different form of cyclobenzaprine. It is NORcyclobenzaprine and it does not go through your digestive system. Game changer.

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@beejenigma Again, glad it's helping you. I am mainly curious about your cost for Tonmya? Is it covered by your insurance?

I found a 2023 study on Tonmya that concluded with a statement saying it was more effective in treating fibromyalgia pain vs cyclobenzaprine, however then I noticed the study was "Supported by Tonix Pharmaceuticals, Inc." the pharma company selling Tonmya.

Anyway, if it's helping you that is great.

REPLY
Profile picture for bunstuffer @bunstuffer

@daisy17 I've taken cyclobenzaprine and every other drug ever used for fibro. My best results have been with plain old Tylenol. It doesn't have side effects that put me in the hospital or make me sick when used as prescribed. I can commiserate with you since I was diagnosed in 1991 and nothing has really been satisfactory. Hope this keeps working for you.

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@bunstuffer What has really helped me is low-dose naltrexone.

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Profile picture for daisy17 @daisy17

@bunstuffer What has really helped me is low-dose naltrexone.

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@daisy17 been on 8 mg of LDN for a year. Never noticed much effect.

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Profile picture for Beejenigma @beejenigma

@daisy17 been on 8 mg of LDN for a year. Never noticed much effect.

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@beejenigma I am taking 4.5mg of LDN a day. Being I'm not sure if I'm in fibro remission or not, I will keep taking it. I've cut back on my cyclobenzaprine and now only take it every few days.

My fibro was triggered by my first bout of Covid in 2021. But looking back, I think I've had short bouts of it for years, usually when the weather changed. When I got it in 2021, it hit me with a vengeance and my flares lasted months. I thank God every day that I feel good as the pain and lack of sleep from fibromyalgia was a nightmare.

Can you tell me what your out-of-pocket cost is for the Tonmya? If it's not covered by insurance, I don't think I could afford it even if I wanted to try it.

REPLY
Profile picture for daisy17 @daisy17

@beejenigma I am taking 4.5mg of LDN a day. Being I'm not sure if I'm in fibro remission or not, I will keep taking it. I've cut back on my cyclobenzaprine and now only take it every few days.

My fibro was triggered by my first bout of Covid in 2021. But looking back, I think I've had short bouts of it for years, usually when the weather changed. When I got it in 2021, it hit me with a vengeance and my flares lasted months. I thank God every day that I feel good as the pain and lack of sleep from fibromyalgia was a nightmare.

Can you tell me what your out-of-pocket cost is for the Tonmya? If it's not covered by insurance, I don't think I could afford it even if I wanted to try it.

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@daisy17 Cyclobenzaprine loses its effect in 30 days or so. This new drug, Tonmya, is NORcyclobenzaprine. Does not lose its effect over time. So far so good.

REPLY
Profile picture for daisy17 @daisy17

@beejenigma Again, glad it's helping you. I am mainly curious about your cost for Tonmya? Is it covered by your insurance?

I found a 2023 study on Tonmya that concluded with a statement saying it was more effective in treating fibromyalgia pain vs cyclobenzaprine, however then I noticed the study was "Supported by Tonix Pharmaceuticals, Inc." the pharma company selling Tonmya.

Anyway, if it's helping you that is great.

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@daisy17 I am on disability, so it is paid for. It does not lose its effectiveness over time like cyclobenzaprine. I am now sleeping better than I have in years!

REPLY
Profile picture for daisy17 @daisy17

I am glad Tonmya is helping you. Do you take several pills throughout the day, or just one before bed? If taken during the day, does it make you sleepy?

I'd like to provide some background on Tonmya. The drug is a reformulation of the muscle relaxant cyclobenzaprine (aka Flexeril) done by making it a lower dose that's taken subliminally rather than as a pill you swallow. By reformulating the drug, the drug company can charge lots more money. I did a google search and found: "Tonmya has a wholesale acquisition cost of $1,860 per month for 60 tablets, which will be reduced to $930 for older patients and those with mild liver impairment." The cost of cyclobenzaprine 10 mg can vary, but without insurance, it typically ranges from about $4.77 for a few tablets to around $20 for a 30-tablet supply. When I have a fibre flare, I take a 5mg tablet of cyclobenzaprine before bed and it helps with sleep and pain.

An article by Pradeep Chopra, MD (a Harvard-trained pain medicine specialist with over 25 years of experience treating complex chronic pain and multisystem disorders.) has this Summary: "In summary, sublingual cyclobenzaprine (Tonmya) is essentially a repackaged low‑dose formulation of cyclobenzaprine, marketed as a novel drug through its patented delivery system. Its pharmacokinetic differences are small, its clinical benefit is modest and comparable to existing oral formulations, and its unique adverse effects may outweigh the theoretical advantage of reduced metabolite formation. Clinicians should therefore critically evaluate manufacturer claims and consider whether simple, low‑dose oral cyclobenzaprine would provide equivalent benefit at far lower cost.

In summary, the report concludes that Tonmya’s sublingual delivery offers only minor pharmacokinetic differences compared to oral cyclobenzaprine. Despite claims of reduced metabolite formation, the active metabolite norcyclobenzaprine remains pharmacologically relevant and may contribute to therapeutic effects. The analysis shows that dosing, rather than delivery route, largely explains any variation in drug exposure. It highlights that low-dose oral cyclobenzaprine already achieves similar outcomes and underscores that Tonmya’s modest pain reduction and unique oral adverse effects do not justify its higher cost or novelty. The conclusion advises clinicians to weigh claims critically and consider low-dose oral formulations as cost-effective alternatives."

Just FYI for those without good drug insurance.

Jump to this post

@daisy17 My doctor prescribed Tonmya but the cost will be over $400/month. I'm on Medicare and a Regence (a supplemental insurance) and I was approved. Once I saw the cost I declined the prescription. I then asked for cyclobenzaprine but the doctor (not my regular doc) refused to prescribe it bc I'm 70 yo. I'm so disappointed! I was hoping to be able to fall asleep easily and have less fibro pain.

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