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    Old 10-31-2006, 05:37 PM   #1
    conductor
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    Generic Actiq News

    Hello All,

    Although I understand the risks of using Actiq (the fast-acting lollipop form of fentanyl), my Lupus condition requires me to use this medication on a reasonably regular basis. The hellacious drawback for me is the cost. I pay approximately $490 per box per month. Depending on the pain levels, there are times I use 2 boxes in a month's time. THE PROBLEM IS THAT THIS COST IS WITH INSURANCE!!

    Now...the GOOD NEWS (I think). I just found out that there is a generic version available, which is manufactured by Watson Laboratories. I spoke to a Pharmacist at Watson who assured me that this generic Actiq is readily available. According to this particular Pharmacist from Watson, my local Pharmacist can order the generic form from his local wholesaler. As soon as I get up tomorrow morning, I will call my pharmacist to inform him of this information.

    What this will do for me is reduce my co-pay for two boxes from $987.53 down to $10--according to my insurance's website AND their customer service operator. Even if this simply reduces my co-pay in half, I would do some sort of gymnastic maneuver that would land me in traction!

    So, for those of you who use Actiq, the generic is apparently available.

    If it is not available--let me know. However, I will live on this "high" for a few days by not checking this website.

    Take care, you all.

    Sincerely,
    Jon (Conductor)

     
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    Old 10-31-2006, 08:23 PM   #2
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    Re: Generic Actiq News

    hugals and thank you for this information would you happen to know if it's sugar free?
    can i ask you something???
    I noticed my flare ups are really bad during weather changes, storms, and stress have you noticed that as well?
    We had some cool days hit this week it was so bad couldn't get out of bed.
    Also my other question for you is do you go into doc for shots or releif when current stuff isn't working???
    Again thank you for the heads up on another generic possiblity and taking the time to post it.

     
    Old 10-31-2006, 08:47 PM   #3
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    Re: Generic Actiq News

    Hey Conductor, I hope things go you way, There is the posibility that the pharnmacisy you use may use a jobber "wholesaler" that doesn't carry the product due to some agreements to carry entire lines and exclusive agreements from different manufacturer manufacturer, but if your present pharmacy says they can't order it because the jobber they use doesn't carry it, be sure to shop around. There may be more than one C-11 distributer a competetor uses and some Retailers actually ship their own C-11's depending on state law. Basiclly , don't except that it can't be obtained, It may not from your pharmacy, but if it's made, someone has access.

    Just a side note, I did see that someone has a Fentnyl capsule hitting the market soon, It would likely take more of the same with a different route of delivery, but it may give you another option and one that doesn't have the teeth problems and sugar worries the pops do. Good luck, Dave

     
    Old 11-02-2006, 01:58 PM   #4
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    Re: Generic Actiq News

    There is a fentanyl fizzy-pill that is called Fenalor, I believe. It is made by Cephalon, the Actiq people. Big Surprise, now that Actiq has gone generic.Also, another big surprise is Actiq's patient assistance program has been discontinued. I have breast cancer and use 8 boxes a month. I have NO insurance and I was recieving the meds thru the Patient assistance program. It was restricted to cancer patients only, no chronic pain people because that would be "off-label prescribing". I am only guessing but I would assume the fentanyl fizzy will be outrageously expensive like Actiq. There are pharmacies, usually in more populated areas who would compound fentanyl lollies in off strengths such as 900mcg or 1050mcg. They are less than half te price and are usually sugar free,made with sorbitol which can give some people severe diarrhea. I figured out I have recieved over $80,000 in free Actiq.There is something wrong in this country, when middle class people don't have insurance, and the pharm companies can charge that much for a med.But that is another post the size of "War and Peace". Hope this helps.

     
    Old 11-02-2006, 04:03 PM   #5
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    Re: Generic Actiq News

    thanks for this info. i am going to ask about it. i think the patch is starting to irritate my skin way too much.

    a lady at the pharmacy was waiting in line with me and was talking about actiq so i asked her what she knew about it and how well it worked. she looked down her nose at me and said "it is for cancer patients only." i said, well, excuse me, but i know many people with my disorder that use it and i was just wondering if it caused problems as it has been considered for me, as i am already on the fentanyl patch. she then said, well, that is only for cancer patients, too. it was her husband who had cancer.

    well, first of all, maybe my spouse had cancer. who knows. she was so rude and acted like i was a druggy or something. doctors have told me that the pain i have is comparable to pain caused by cancer. why do people have to be so rude!

     
    Old 11-03-2006, 03:59 PM   #6
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    Re: Generic Actiq News

    Thank you for your responses!!

    Zoey1:
    Do you have Lupus? I wasn't sure from your post. However, my Internal Medicine doctor oversees my Pain Management. There is one PM doc within sight of my Internist's office. I expressed to her that I would rather jump from a plane without a parachute before seeing that man again. She informed me that she does not ever send any of her PM patients to him because of all of the complaints she's received. In my medical records, I have the notes from other PM docs who have verified my pain problems(when I lived in different places). The Internist I previously saw took over my PM stuff. He retired. He was so good to our family that I'm still holding a grudge, but I'll get over it--only because we found such a superior doctor! Also, I have not had the occasion to need injections for pain in nearly 6 years. My pain medicines (per month) are 3 boxes of Duragesic 75 mcg (Sandoz generic), Dilaudid 8 mg (#100 tablets), and Actiq 800 mcg (1 box). I have seen 3 (I think) Rheumatologists and found them to be of no help whatsoever. After having two allergic reactions to two different IV treatments that were pumped into me, I gave up. So much for that! Pain Management has been the medical savior of my life. I wish you well!!

    Shoreline:
    You really offered some excellent advice! I had no idea about this entire wholesaler deal. My "Mom and Pop" pharmacy is THE place to hunt down opiates in our county. If you need it, they can get it! HOWEVER, I have already placed a call into "Pop" to check on its availability. I love, love, love these people, but I pay close to $500 per box. As you have suggested, I will hunt down a pharmacy that will obtain this for me if mine cannot. Let me give you a "for instance". I was paying over $300 (for 3 boxes) of brand Duragesic, but when the generic came out--I only had to pay $10!!! What is so annoying is that the Actiq price is WITH my insurance. I have no idea what it would cost without insurance! Thank you for the 'heads up'! If you read the post by Ginger Snap in this thread, you will see some info on the fentanyl pill. It's my understanding that fentanyl in a pill form (assuming you swallow it whole) would loose a great deal of its potency because of the route of administration. Thanks again, Dave.

    Ginger Snap:
    Cephalon would just be remiss if they couldn't find another way to rip off people who need fentanyl! I am truly sorry that you needed Actiq due to your cancer. I certainly hope that you are beating this tragic disease. As strange as this may be, I know a guy--yes, a male--who has breast cancer. I am aware that this is not all too common, but it has placed him in a dire position. Also, my Aunt has this disease, too. So...Please understand that my sympathy is sincere. Now, I would have never even given it a thought to ask a compounding pharmacy to make these 'off-strength' lollipops. I will look into this, as well, because I happen to live within 15 miles of a major compounding pharmacy. It certainly cannot hurt to ask. Thank you for your suggestions, and may your health/strength improve beyond any of your expectations!

    Msswank95:
    First of all, the Actiq is sort of a "supplement" to people wearing the patch. It is not a substitute for the patch. Actiq is used as a break-through pain reliever. If you are experiencing tremendous pain even though you have the patch on, the Actiq will add a small amount of fentanyl (the same stuff in the patch) to help your pain. Which version of the patch do you use? The Brand name, the Mylan generic, or the Sandoz generic? In my humble opinion (ha!), the Sandoz works head-over-heals better than the Mylan!! Even though the Sandoz is a "generic", it is made by the same people who make the brand name. The Sandoz costs the pharmacy a little more than the Mylan, but it is worth it to me. When I had my first month of generic, it was the Mylan type. I went through some of the most hellish withdrawal a person could go though, along with NO PAIN RELIEF! However, when I got the Sandoz, life returned to "normal". Finally, I generally don't condone violence, but that woman you encountered in the pharmacy deserved repetitive and swift kicking. Nonetheless, I wish you well.

    Jon (Conductor)

     
    Old 11-04-2006, 11:29 AM   #7
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    Re: Generic Actiq News

    thank you, jon, for the info! i'll ask the new PM doctor i am seeing about it. i hope he is open to listening to me. i hate docs that don't listen to their patients! if not, i found two guys local to me who are head of the PM society in Texas and they are lobbyist in support of reform in how doctors are able to treat pain (in support of the patient and giving adequate relief of course), so they sound great if they are on my plan. crossing my fingers with this doc or the other course of action!

    about the brand i use. i have used all three. the sandoz and the brand come off too easily and so i don't get as much relief as i do with the Mylan. go figure. i even use the tegaderm strips to try to tack them down and they still come up after less than a day! however, all of them cause a little bit of a rash and actually kind of cause a little of the skin to break apart, like a scratch with a scab, around the perimeter of the patch. i am wondering if my body just doesn't tolerate it. if that is the case, what is my alternative, i wonder? it really worries me. once i was so sure i wasn't getting relief from the patch (while using the brand or the sandoz, both) that i took it off and went without a couple of days and had horrible pains and withdrawal, so i know it was working a little, but since i switched back to the mylan a few days ago today is the first day i haven't had to use BT meds every four hours at the maximum dose! yay!

     
    Old 11-04-2006, 04:25 PM   #8
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    Re: Generic Actiq News

    People are so IGNORANT! It reminds of the people who ask me why I am parking in a handicapped space with my placard plainly visible. "You don't look handicapped, they say. My response varies between "You don't look stupid either, but looks are deceiving" to " I have a homicidal personality disorder, and I get very angry in parking lots"!!! Usually shuts them right up. I make a typo on the fent fizzy pill, it is actually Fentora. Cephalon has to make their money, just like the folks with Ambien. It's going generic, so they make Ambien CR. I figure with meds like Actiq, they realize you are probably going to die so you won't be on the meds forever like a diabetes or hypertension drug. Put it to you at the end of life, so nothing is left for your loved ones. Oh well!


    Wishes for pain free days and nights

    Ginger

     
    Old 11-04-2006, 04:29 PM   #9
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    Re: Generic Actiq News

    Sorry forgot something. To help relieve the rash and itch from the patches, before you put on the patch spray the skin with a nose spray like Flonase. Let it dry, then put on the patch. It has to be a steroidal type of nose spray, NOT Afrin or a decongestant type. Ask the pharm if you need help. Works Wonders!!


    Ginger

     
    Old 11-04-2006, 05:18 PM   #10
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    Re: Generic Actiq News

    i wonder, then if something like cortisone would work or is it too oily? and what about the skin actually being broken around the edges. is that normal? it is like i have a perfect square dug into my skin when i take it off.

    oh, and ginger snap, i wanted to give you a big (((((((((())))))))))

    i am sorry you have had such a hard time and wish you luck with your recovery, and prayers of course.

    Last edited by msswank95; 11-04-2006 at 05:20 PM.

     
    Old 11-05-2006, 12:04 AM   #11
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    Re: Generic Actiq News

    MsSwank,

    Cortisone cream is too greasy, and will cause the patch to slip off. Flonase works perfectly, (now available in generic). There are several others like Flonase but the name escapes me. It will help heal the sore areas, too. I have actually bled from the skin breaking down. The Mylan brand doesn't work for me, so I stick (no pun intended) to Sandoz. Try it, it can't hurt. Just make sure to let it dry before putting the patch on. The last thing we want is to ruin a patch.
    Too expensive and too hard to explain and we probably won't get a replacement. Hope this works.

    Ginger Snap

    Wishes for a pain free day.

     
    Old 01-27-2007, 05:29 PM   #12
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    Re: Generic Actiq News

    Hello,

    I have used to be on the Actiq suckers. I then was on the phase 3 study for the Fentora. I absoluetly love them. For me, they work faster, longer and overall just better. They cost 40 bucks a piece, but they do have a patient assistance program (cephalon) So, I dont have to pay for them.

    Cephalon is basically making Fentora their new flagship drug. While they will contiunue making Actiq, their marketing will be in their new drug. BTW, Fentora will be marketed to people with low back pain and neuropathic pain. As of today, its only approved for cancer, but, I promise that will change shortly. I ended the phase three study abou 4 months ago and will be introduced to the FDA shortly.

    What I thought was interesting. About a year before the generics came out a 1600mcg Actiq sucker cost around 35 bucks. Right as they lost the lawsuit with Barr pharm. They started to raise their price. Now, a 1600mcg sucker costs about 60 usa dollars.

    My doc stated that the Cephalon reps were bragging that the Fentora is only about 70 percent of the cost of the suckers but forgot to mention that they are actually more expensive before the generics became available.

    Fentoras are a godsend, I just wish that they would make them more affordable. Atleast, I can get them for fee without having to have cancer..

    DG

     
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