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Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 7/11/2010 9:33 AM (GMT -7)   
Anyone have any experience with this? It's brand new. Similar to Actiq or Fentora, but doesn't cause all your teeth to rot out of your head. :) Seriously the cavities are crazy.

I did find the manufacturer's site but it would help if I could hear about personal experiences with it. Strength is supposed to be midway between Actiq (weaker) & Fentora (stronger). Other main concern was taste/how it dissolves. Besides avoiding cavities, it would be nice to have a medicine I could only use half of & not have everyone know. Can't really cut Fentora, it falls apart.

My doctor's maybe gonna switch me to it at my next visit. I was wondering if anyone has had any experience with it.

thanks,
frances

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 7/11/2010 2:02 PM (GMT -7)   
Hi Frances :)

Don't even get me started about the dental stuff.... If I only would have known what was to come after using Actiq for 2 years.... :( I didn't have a cavity until 17 years old, and the 2nd one until 30... and now - I'm in the midst of creating a whole new mouth.

Anyway, thank you so much for this info! I'm really interested in hearing if you switch to it - and what your experiences are on it. It will be September or better before I start back on the Actiq - and, if there's something else that won't do the damage - I'm really curious to switch.

Yes, I still use the Actiq (well not now, but will go back on it)... it's the only thing that really works as a "good" breakthrough med for me. That being said, I constantly switch the places in my mouth where it goes it (not letting it "sit" in one place, like I used to) and immediately brush my teeth afterwards. I tell myself that it helps - but I really don't know.

Do you think the Fentora is stronger than the Actiq? Well, I know dosing wise it is - meaning you use "half" or whatever the Actiq strength...but I used it for about 4 months and then switched back. I just didn't like how it dissolved and such.... sometimes it seemed to work; other times not so much.

Like I said, let me know if you do switch and what you think. I don't think there's many of us on this med - because it's so darn expensive and many insurances just won't cover it.

Thanks Frances :) -- Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

Pain Issues: MANY; multiple back issues (cervical/thoracic); migraines; severe carpal tunnel syndrome; widespread joint/muscle pain; nerve pain in hands/arms/feet. Treatments - multiple meds; injections; nerve blocks; have had intrathecal pain pump trial (successful, w/ Dilaudid); eventually will have it permanently implanted.

MAJOR surprise - Pregnant, w/ twin little girls (after six boys). Due Sept, 2010. Praying they are healthy. YES, you can have chronic pain AND have a successful pregnancy - not easy, but it can be done. :)


Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 7/11/2010 4:08 PM (GMT -7)   
Tina,
I only say that because 200mcg of Fentora results in 180mcg bioavailability of fentanyl, whereas 200mcg of Actiq results in 100mcg bioavailability of fentanyl. But different drugs work better for other people. For me, I was overdosing on the 25mcg Duragesic patches. So I understand that different people tolerate things differently.

Actiq has confectioners sugar plus citric acid. Fentora has citric acid plus mannitol (sugar alcohol). The Onsolis will still have citric acid but doesn't have any sugar or sugar alcohol (it's made with saccarhin which can actually help a very tiny bit in preventing cavities).

Brushing your teeth should help if you can actually finish off a whole dose of Actiq in the 15 minutes they tell you it should last. I've maybe been able to do that once or twice in the last 7 years. Mostly we use it similar to Duragesic -- sucking down a fraction of the 200mcg dose every hour. It totally throws me off b/c you're supposed to wait 30 minutes after you finish it to brush your teeth or else you lose a good part of the medicine (I tried it for a while & that's exactly what happened). Since it takes me about 20 minutes to suck on about a third of a dose & then I have to wait 30 minutes before brushing my teeth and then only have them clean for about 40 minutes before it's time for my next partial dose, I can't really keep up with it.

And the Fentora seems to be hurting my teeth WAY worse than the Actiq. I take that at night so I don't choke on the Actiq (it would pool in my throat & end up in my sinus cavities only to drain down later at night & wake me up choking on my saliva -- plus the fentanyl itself makes it slightly more difficult to swallow so when I'm asleep or nearly asleep that's an issue). Since I started on that the cavities have been looking a lot worse. My dentist says they're both really bad but what choice do I have? I'm allergic to every other active ingredient on the market.

The lowest dose of Onsolis is 200mcg which gives you 150mcg of fentanyl. I'm thinking I can cut them in half & just carefully wrap the rest back up in the foil pouch for later but hopefully it doesn't get degraded or anything. I really don't need 150mcg at one time.

I'll let you know if it works for me. The manufacturer says there's still a risk of cavities with Onsolis (b/c of the acid) but we're thinking that between the fact that there's no sugar, the fact that it's not against my gums & the fact that you can brush your teeth or drink water as soon as it's fully dissolved that my risk of additional cavities should be much, much lower. Crossing my fingers. x

frances

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 7/11/2010 4:10 PM (GMT -7)   
PS -- One other thing my dentist recommended which seems to help a little is that if you can't brush your teeth immediately after finishing the dose to chew gum with xylitol (sp?). It can't have sorbitol or mannitol or any of the other "-tol"s in it (those are sugar alcohols) but as long as it doesn't have those and does have the xylitol it will help fight the cause of tooth decay. It's not perfect but it does seem to have made a tiny difference -- only had 2 cavities last time instead of 4 the time before.

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 8/2/2010 7:51 PM (GMT -7)   
Just wanted to let you all know that this drug is nearly impossible to acquire.

The PM has to nationally register to prescribe it through Onsolis FOCUS.
The patient needs to nationally register to receive it through Onsolis FOCUS.
It can only be ordered through a direct delivery (aka, mail order) pharmacy and, you guessed it, the pharmacy must register through Onsolis FOCUS.

PM needs to fax it to the pharmacy. Then a computer label is sent to the PM to overnight it to the pharmacy.

The pharmacy will only deliver it to the patient's home & an adult signature is required.
The patient must agree to submit to random drug screens & some secret group of people can decide that you don't have the right amount of the drug in your system & ban you from ever getting any more. Not sure how the drug screens work yet.

I'm not sure how well the whole system will work, but I guess there's something to be said for it b/c when Fentora came out, on week one there were already creepy people on the internet talking about selling & abusing it. With Onsolis those people are all just complaining that noone can get it & everyone wants it (idiots!).

My PM is trying to get registered, so if I get any updates I'll let you all know but just wanted everyone to be forewarned that you can't take a script for this med to your local pharmacy (actually, you can't do anything with a script b/c it has to be postmarked from the doctor's office). Still, if it can actually keep it out of the hands of those goony people, I think it would be worth it. And if I can stop getting all these cavities I will be really happy.

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/3/2010 4:25 PM (GMT -7)   
Wow, Frances, thanks for all the info... I am going in to talk to my PM and get my meds straight for after I have these babies... and I was going to talk to him about this med.

What's the deal? I mean, Actiq and Fentora have been around long enough.... it's basically the same medication, right? So why so hard to get it??? I'd understand more (maybe) if it was the first of it's kind - but come on.

When you say submit to drug screens - are you saying via your PM office? Or how does that work? I'm sorry; I have a hard enough time w/ the whole concept of drug screens (not because I have anything to hide :) - but just in principle).... but I wouldn't do a drug screen that looks for the "right amount" - or how you metabolize the drug, etc... there's just too many factors that can make those screens invalid, in my opinion.

Anyway, keep us updated on what more you find out. --Tina
Main Health Issues: Dysautonomia/POTS; CFS/Fibro; Chronic Pain (back issues, migraines, carpal tunnel, among other things); Chronic Hypertension; Hypothyroidism and Hypoadrenalism; Mixed Sleep Apnea (on BiPap); Depression/Anxiety; Vitamin D Deficiency.

MAJOR surprise - Pregnant, w/ twin little girls (after six boys). Due Sept, 2010. Praying they are healthy. YES, you can have chronic pain AND have a successful pregnancy - not easy, but it can be done. :)

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 8/4/2010 11:04 AM (GMT -7)   
Hi Momto6,
 
I don't mean to hyjack a thread, but my PM does the UA's that monitor metabolism of the meds and how much you actually have in your system.  I agree that they are not accurate because my xanax showed up that I was not using it as directed (which is insane since I take one tablet per day in a CR formula and I never miss a day....ever).  I took the test to my psych who prescribed it and he made notes.  These tests are insane expensive too and I'm sure I'm due for another soon. 
 
Good luck with the med....sorry, but I have no experience there to give.
 
All my best!
Retired Mom

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 8/4/2010 7:10 PM (GMT -7)   
RetiredMom,

That's exactly why I don't like the metabolism of meds testing... too many variables. And, yes, I've heard it's really expensive, too. That being said, as far as I know - I've never had one done. My PM clinic just does random UA's, maybe 2 per year, something like that.

--Tina

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 8/4/2010 8:17 PM (GMT -7)   
Tina,
I have no idea how the U/A's work. Might just be at the start to show you're not opioid naive, might be run entirely by your PM or might be run by the Onsolis FOCUS people.

It is the same drug, but fentanyl is known to have a high street value. I know here in Chicago there is a huge issue with it. Many pharmacies in the city won't even order it, much less stock it, because originally there were too many break-in's with people trying to steal it. There have been a number of televised police meetings telling people with a legal prescription for the drugs to keep it well secured & hidden somewhere other than your medicine cabinet. about 50% of the time when I go to pick up my thyroid meds (can't purchase Actiq in the city, so I have to drive 90 minutes out of town to the nearest pharmacy that will order it for me on a monthly basis) idiots approach me asking if I will sell them a script for oxy, K or perc (short for Actiq -- yes, I know why but it's a dumb reason). Sometimes the police are pulling into the parking lot by the time I hobble up to the front door; if not, they're always there by the time I leave.

On top of that, there are the idiot doctors who just give people Actiq for occasional migraines or who give people more & more & more & more of it when it's obvious to just about everyone else that they have an addition issue.

DEA says they are doing this trial with Onsolis (I think there are 2 others they're doing the same procedure with) and could possibly make this the new standard for all C2's. If it turns out that people finally stop treating us like drug addicts because the idiot drug addicts can't get their hands on the meds no way no how, then I'm in favor of it. Hopefully it won't turn into just another circus act for people who are already in so much pain & misery.

I'll keep you posted on how it goes once my PM gets registered.

peace,
frances

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 8/4/2010 8:27 PM (GMT -7)   
Keep us posted on how this medicine is working for you...
I'd like to know if you think it's better than the actiq ...
and with insurance what your co-pay for this medicine was???
my insurance tiers medicine...such as 1,2 or 3..with 3 being at
the higher costs for me....sure would be nice if all my meds were in tier 1...
Sure hope this medicine works good for you...healing HUGZ
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2284
   Posted 8/5/2010 7:11 AM (GMT -7)   
Chart,
I will probably be on the lowest dose of it -- that's what I'm on with the Actiq. Unfortunately, I don't have co-insurance this year. I already checked & they said I pay a $150 co-pay because it's considered a formulary. Last year, though, I had co-insurance but I could call my insurance company up ahead of time & ask what my co-insurance would be. They were pretty accurate (within a few dollars) every time. You might try that if you can find a pharmacy that's approved.

I'll let you all know how it works, but I don't expect much difference. Bioavailability is halfway between Actiq & Fentora at about 75% of the dose. The main reason I'm switching is b/c it doesn't contain sugar or sugar alcohols. It may yet be a number of weeks before we sort everything out with this registration process.

frances
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