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magicmom	May-12-04, 06:24 AM (CMT)
"Actiq suckers safety issue???"
I went to see a pain management doctor and he prescribed Actiq for breakthrough pain. After reading the package insert I'm a bit concerned, even if he isn't. Now, I take Tylenol #3 and Fioricet. I've had numerous demerol/phenegran injections over the last 20 years with no bad side effects, but have never taken Duragesic, Dilaudid, methadone, morphine, MS Contin, or Oxycontin. The phamplet says that your breating could stop if you weren't "used" to these kinds of drugs. Anybody taking Actiq and not those drugs stated on the phamplet? I'll know that if you respond it's safe (Sorry, my dry sense of humor) Thanks for any first hand input you can give me. Magicmom
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RE: Actiq suckers safety issue???, ExportMgr, May-12-04, (1) RE: Actiq suckers safety issue???, Elise, May-12-04, (2) RE: Actiq suckers safety issue???, LTAYLOR, May-12-04, (3) RE: Actiq suckers safety issue???, magicmom, May-12-04, (4) RE: Actiq suckers safety issue???, 30yrsofheadache, May-12-04, (5) RE: Actiq suckers safety issue???, LynelleH, May-12-04, (6) RE: Actiq suckers safety issue???, magicmom, May-13-04, (7) RE: Actiq suckers safety issue???, LTAYLOR, May-13-04, (8) RE: Actiq suckers safety issue???, eskielover, May-13-04, (9) RE: Actiq suckers safety issue???, magicmom, May-15-04, (10) RE: Actiq suckers safety issue???, Loualice, May-16-04, (11) RE: Actiq suckers safety issue???, eskielover, May-17-04, (12)

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ExportMgr	May-12-04, 06:50 AM (CMT)
1. "RE: Actiq suckers safety issue???"
I've never taken any of these drugs either, precisely because I'm afraid of what might happen! I wonder if they purposely make the possible side effects seem really alarming, like in those commercials... "dizziness, nausea, stroke, heart attack, or possible death..." I'm curious to see the responses of others. Mary
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Elise	May-12-04, 09:45 AM (CMT)
2. "RE: Actiq suckers safety issue???"
LAST EDITED ON May-12-04 AT 09:51 AM (CMT) If anything has happened once in the trials, it's listed as a side effect. Even if the person who stopped breathing had some other pathology. I wouldn't panic about that. I'd just take it slow. What happens to me when I am afraid about taking a med is that I kind of panic and bring on anxiety symptoms that I wouldn't have if I weren't panicked. I hope that doesn't happen to you. E PS I love it when the side effects is "death" aka you might stop breathing! Actually, that's pretty funny. You might stop breathing. Oh, let's see, if I stop breathing, what will happen next? Hm. Will I say to myself, Self, it looks like we've stopped breathing - maybe we should start again? It's so reassuring. I mean, there you are with a migraine, in hideous pain, and you have to think through it: ok, I can try this med and maybe die, or I can live with the pain. I think that might be a pretty good gauge of how bad a migraine is. When people ask, how to you decide on a scale of 1-10 how bad the pain is, if you go for the possible death, it's a 10, if you decide against it, it's not so bad.
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	LTAYLOR	May-12-04, 10:47 AM (CMT)
	3. "RE: Actiq suckers safety issue???"
	Depressed Respiratory issues are side effects of all the opiate narcotic pain relievers. I have tried the Actiq as well and was alarmed at the warnings. Of all the med warnings this one was the scariest. I think it depends on the amount of opiates your body is used to. You may be taking enough codiene regularly. With the sucker you can use it for a few minutes and then stop. You dont have to use it for the whole time they tell you. You can see how well you tolerate it. Good luck. L
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	magicmom	May-12-04, 11:59 AM (CMT)
	4. "RE: Actiq suckers safety issue???"
	Thanks for the responses. I knew I could count on you for some first hand experience and advice. Trust me, I think I can speak for all of us when I say that when I'm at a level 10, I just want pain relief....forget the warnings. I think my basic instinct to survive kicks in and knows that the pain has to stop, or at least calm down a bit. That level of pain can cause problems that could be worse than the warnings for the drug. One of those situations where you could be caught between a rock and a hard place. Like you said, L, the warnings are the most dire I've ever read on a package insert. Of course, I asked the pharmacist and I got the okay from that end of the equation too. Maybe there will be more experiences and advice popping up on this thread. Sure can't get enough of that stuff! As the saying goes, knowledge is power. Thanks for sharing! Magicmom
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30yrsofheadache	May-12-04, 03:06 PM (CMT)
5. "RE: Actiq suckers safety issue???"
Magicmom, Would you let us know how it works? I have been thinking about asking my Dr. for that to keep me out of the ER. Hope it works for you. Hugs, Cindy
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	LynelleH	May-12-04, 03:10 PM (CMT)
	6. "RE: Actiq suckers safety issue???"
	I have never heard of this form of medication. Is it really a sucker, as in lollipop? Kind of like the medicine lollipops they make for kids' cough/sore throat medicine? It would at least make it an amusing or kind of lighthearted way of taking medicine. Lynelle
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	magicmom	May-13-04, 07:31 AM (CMT)
	7. "RE: Actiq suckers safety issue???"
	I haven't opened any of the Actiq yet, but they are made so you put them between your cheek and gums. You are supposed to twirl them and move it from one side of your mouth to the other to facilitate the release of the ingredients. The idea is that the medication will go from your cheek directly into your system, bypassing your stomach which is totally shut down anyway during a severe migraine attack. You are NOT supposed to suck on them or chew them like you might do with a real sucker. And, no, they don't look like a sucker to an adult, but a child might think differently. Since they could be fatal to a child, they are supposed to be under lock and key if children are present in your home...at ANY time. That means grandchildren visiting too. Could be fatal to pets too! If there is any medicine left on the stick when you are done, you are supposed to run hot water over it to disolve it before discarding. Like I said, the most dire warnings I've ever read. I have a migraine right now, but it's only about a 3 or 4, that's why I'm able to be on the form this morning. If I do HAVE to take the Actiq, I will definitely let you know if it helped, and for how long. Magicmom
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	LTAYLOR	May-13-04, 01:54 PM (CMT)
	8. "RE: Actiq suckers safety issue???"
	I had mine made into lozenges by my compounding pharmacy. They could even adjust the flavor for me. I did not waste any of the medication by runnng down the drain. I just put the unused portion back into a small plastic container until the next migraine. I also held the medication in place for a few minutes at a time and would increase it depending on how severe the migraine was. You will find your specific time adjustments. I have used the cheek & gum method for many of my medications for a long time. I guess it is absorbed through the muccus membranes. I can not have any medication hit my tummy during a migraine. I go from bad to worse in a matter of minutes. I hope they work for you. They were fairly sedating for me. Good Luck. L
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eskielover	May-13-04, 10:35 PM (CMT)
9. "RE: Actiq suckers safety issue???"
Hi, I used ACTIQ for about 8 months. I was taking 4-5 400ug suckers a day. There is something you might want to know about this product however. When I was taking it, the formulation was the one that was created for the US. They changed the formulation to the European formulation around last September. The difference was quite a bit. The US formulation was more of a sugar sucker that disolved between 15-20 minutes, allowing it to get into the system rather quickly. It was also smooth to rub around in your mouth which allowed it to disolve quickly. The European formulation is like placing a piece of chalk in your mouth. It rubbed sores in my mouth, & it took between 40-50 minutes to disolve. The taste was like chalk also. I called the manufacturer and complained very loudly and atimately even threatening to throw the suckers into the trash because no one would take the responsibility of taking back the ones I couldn't use because they no longer worked for me. There have been many complaints on the reformulation because the manufacturer is running plecebo trials to try to come up with a new formulation that is acceptable to the public. I was active in several of these tests. The old formulation allowed me to go back to riding my horses as long as I had a sucker to take as soon as I got finished riding. In talking about the side effect of not breathing, I had that experience with Benedyl & it didn't even have that warning on it. Other meds that don't have side effects listed are Composine. Did you know that you can get Parkison's effect from taking it (I couldn't go to the bathroom myself, shower, eat, walk). Life was horrible for about a month until the meds got out of my system. There are alot of meds that have side effects that aren't even specified, and there are alot of meds that don't have side effects that are specified. It all depends of the individual. We even had an example of one of our little doge getting into a Fentynal patch that we thought we had thrown away. She was less that 1 yr at the time and was walking around drunk (kind of like when I had done overdoses). She was drulling, but never stopped breathing. So if a little dog like that can survive that amount of Fentynal without stopping breathing, I'm sure the chances of an Adult having that problem is a little less likely unless you are prone to that. I did find several anti-depressants that when taken together at an overdose will also cause you to stop breathing (I ended up in ICU with a breathing tube & a coma for 8 hours). However I took the same amount of the same meds of purpose at a later time, and it had no effect on me. So you never know what will reace & what won't. I would not think that by taking 1 (what ever dose you have) it would probably only give you an indication as to whether it workes or not. But it is always better to be safe that sorry. An experienced ACTIQ user, Debbie
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	magicmom	May-15-04, 05:58 AM (CMT)
	10. "RE: Actiq suckers safety issue???"
	LAST EDITED ON May-15-04 AT 06:48 AM (CMT) I used the Actiq on Thursday...over the day, two of the 400 mg. It only took away the pain for about 30 minutes. I saw my doctor Friday and he doubled the dosage...800 mg up to four times a day. On Friday I used two of the 800's. The first one took away the pain for about two hours, but by the time I could take the second one, my head was raging and nothing helped. While trying to disolve the second one, I almost vomited. When you are so nauseous with the migraine, ANY taste is horrible. The Actic has a sweet taste to it. Needless to say, I didn't (couldn't) take any more. On the good side, I didn't get any of the resperitory problems they were warning about. Thank you Debbie for the detailed description of the med. It's really appreciated. Magicmom
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	Loualice	May-16-04, 01:09 PM (CMT)
	11. "RE: Actiq suckers safety issue???"
	Dear Magicmom or Debbie, I was wondering what the cost of the Actiq sucker is? If you don't mind me asking. I am considering using this, but have to figure up the cost effectiveness of the product. I don't have insurance, so I am already paying around $600.00 a month for my Duragesic patches alone... I have Lorcet10/650 at my disposal for breakthrough pain, but it's not controlling it. What are you guys on for your daily pain management? AND, have you tried Lorcet 10? Does that work for you? I know what all of the text says... but, until you have actually used the medication, you just don't know how it is going to work for your body. Pain management is SO blasted subjective. I know that I could "go up" on the Duragesic patch... but I really don't want to have to do that... Mainly because it's so freaking expensive... and my total medicine bill per month is around $1200 a month... sometimes $1400. depending upon what's going on... SO... If you wouldn't mind telling me what you think of Actiq and how you use it, in combination with what... and so forth... I surely would appreciate it. Thanks so much. Lou
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	eskielover	May-17-04, 01:14 AM (CMT)
	12. "RE: Actiq suckers safety issue???"
	Hi Lou, The last time I used ACTIQ was when they changed the formulation last Sept. It no longer worked for me after that. However, the cost was $450 a box (24/box) & I used 5 boxes. Luckly at that time I had insurance. I also was on 100ug duragesic patch (2 boxes). The ACTIQ with the old formulation helped the breakthrough pain from the patch which wasn't at a high enough strength to work. Now I'm on 2 100ug patches every 3 days & I never have any breakthrough pain. It is a constant no pain level. I thought ACTIQ was good because I could use it every 4 hrs, then the pain came back & I would take another. After being on the 2 100ug patches & never having pain come back, I'm spoiled & don't care that it costs me $1300 a month. I actually stopped some of my other meds so I could afford the patches. I found out the other night when I went into the ER for chest pains that my blood pressure was very low, so I guess going off my blood pressure meds had no effect. Even though I started taking them for the migraines, the other Dr.s kept them going for high blood pressure because it was always so high when I had migraines. These meds are extermely expensive. The only reason that I can thing of is that they are using the money for R&D for other meds to be used for Cancer patients (which Duragesic & ACTIQ are actually for). I am now living on my retirement money because I'm on disability & my husband is unemployed at the age of 53. No engineering companies are willing to hire people our age, so it's back to school for a second career. Anyway my retirement will only last another 6 years, so it took some desiding to have to pay for the patches, but it is worth it to be able to live again. Hope this gives you the information you need. Debbie
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