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Old 11-09-2006, 10:29 AM   #1
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Unhappy Actiq and problems getting it.

Hello everyone I am sure that you understand where I am coming from if you have read my other post if not I will sum it up.

I have been on Actiq for about 10months now. I have trouble with my insurance [U]every[U] month. But they always have paid for it after the initial shock. However, as I posted the other day, I went to my pharmacy to get it and they said my prior approval expired in october and before I could get the Actiq I had to get another one from my doctor. So here goes the run around. They told me that on Tuesday. Which is the last day I had med left. THey said if everything got through that I could get it on Wednesday. Which would be miserable but tolerable. So yesterday I called my doctors office and told them what to do and what the ins. company said to do. And waited. Did not hear anything. So this morning when I got up, I called my ins. company to see what was up. They said oh. I just need to send this form over and get it approved. It will be done by 4, and you will get either a yes or no. OK. So then I wait. I am in so much pain plus not having the actiq for going on 2 days doesn't help either. I am not addicted to it by any means but my body is dependent on it. but anyway I called my doctors office to see if there was anything they could do, ie. see me in the office, send me to the ER or something. And the woman who handles the appeals answers the phone. She said oh yeah I sent them the info and you should be hearing somthing. I explained everything to her and then she said well since you got your oxycodone filled you will not be able to get the actiq anyway. Now mind you I have been on both since last dec. I explained that I got my oxy's without any trouble and they never mentioned that since i was getting them I would not be able to get my actiq. AAAAAHHHHHHH. So now I sit in agony and wait. I am sorry this is so long, i just needed to vent to someone who understands what I am going through.

Does anyone else have trouble like this? Don't get me wrong I thank GOD that my insurance even let me get the Actiq in the first place. That was a true blessing. And I completely understand that it is an EXPENSIVE med. But what are we suppose to do when we have been on it forever, and then they decide not to fill it? I know they don't purposfully want us to go through withdrawel but I am having a hard time believing it right now.

Has anyone ever came off the Actiq successfully after taking it for an extended period of time? Please let me know your stories.

Thanks again to everyone, and again I apologize for the venting.

j

 
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Old 11-09-2006, 12:22 PM   #2
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msswank95 HB User
Re: Actiq and problems getting it.

they aren't doctors and shouldn't be making treatment decisions for you. it also sounds like they are policing it or something saying you can't have two opioids. ridiculous.

you need to get some intervention on this from an insurance coordinator who handles benefits where you get it, through the doctor, every route you can take. this is ridiculous.

did you tell them they now had a generic?

 
Old 11-09-2006, 12:39 PM   #3
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RetiredDirector HB UserRetiredDirector HB User
Re: Actiq and problems getting it.

I take it that Oxycodone is your primary med and the Actiq is for breakthrough? The reason for the question, is have you and your doctor considered Methadone as the primary? It would certainly handle the pain better than Oxycodone and in situations like this when you don't have the Actiq you would probably be in better shape with Methdone or maybe the Fentanyl patch.

I am on SSD and I'm on Methadone, 180 mg a day and I feel you might want to consider a change from the Oxy. I take nothing for BT.
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Last edited by RetiredDirector; 11-13-2006 at 06:26 AM.

 
Old 11-09-2006, 12:50 PM   #4
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Re: Actiq and problems getting it.

Hey J, I haven't come off Aqtiq, but obviously people have, the only unseccesful way would be to die, and that's not going to happen. Have you asked your doc about prescribing 90 day supplies, my wife gets her meds in this manner and it's actually much more conveinant. and would hiopefully solve problems like this. When they satrt you they give you a 30 day supply because they know the initial order will take time. So she filled her 30 day supply and mailed off the the script no more than 2 weeks later and got the new 90 day supply about a week later. You can pay extra for overnight delivery but it didn't seem worth it. Everythinghas run smoothly since she started this last Januaray.

Every insurance is different though. I have a medicare part D plan that dioesn't consider pain medication a maint drug, at least not short acting pain meds. I had to search long and hard to find a plan that covered the meds I take and fortunately all but one have generics. But insurance companies are a buisness, if there is a reason to denie a med, and their paying thousands out every month and collecting 12 bucks a month or whatever the premium is. It only makes buisnes sense to look for reasons not to aprove it. The biggest reason not too is that it's FDA aproved to treat only BT cancer pain. If you don't have cancer, it's always something for them to fall back on and deny off label use.

As far as something equivelant, the next strongest singe dose of oral pain meds is 30 mg Roxicodone. 8 mg dilaudid could be argued and 10 mg Opana "oxymorphone", but both are far less effective orally than IV and i bet they would want pre aproval for OPana because it's so new and there are other reasonabale choices. It's just a matter of how many pills do you have to take to equal the Aqtiq dose.

Not being able to fill 2 meds like the one lady said doesn't make sense. I assume your talking about Long acting and not short acting oxy. I've never heard of an insurance company denying the use of BT meds. If the do deny Aqtiq, hopefully your doc will use one of the oral meds that will fly through as a generic version. Keep fighting for the med you need, but having nothing during the fight will just make the next few days worse and worse.

Director may have agood idea, Meth should prevent WD from the aqtiq and allow frequent enough dosing not to need BT meds.

Good Luck, Dave

 
Old 11-09-2006, 08:56 PM   #5
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npainnTN HB User
Re: Actiq and problems getting it.

Thanks to all for the support. I did finally get my Actiq this evening, but not before having to go to the ER. I had called my doctor to see what I could do and he said to go to the ER. Well they all looked at me like a druggy. I am not now nor have I ever been one. I NEED the meds or I wouldn't take them. But at least they did approve them and I am able to get some relief. I was at the hospital for over 8 hours. The first time they gave me something for pain was about 2-3 hours after I got there, and it was only 2mg of morphine. The second was right before I left and it was 4mg of morphine and 12.5 of phenergran. It al least took the edge off but with the high doses of meds I am on they didn't do much.

My Actiq is for BT pain and the oxycontin is primary. I ran out of my oxy about 2 1/2 weeks ago and could not get it filled until yesterday. I am going to see a new PM in a few weeks and hopefully he will have some new ideas. I just want to go even 30 minutes without pain.

I am going to ask my doctor about the 90 day supply. That would be great because then I wouldn't have to worry about running out every month like I do now. This has been the worst 48 hours ever. I never want to come off of it again cold turkey.

but anyway, thanks again for all your support. I will keep you updated.


j

 
Old 11-09-2006, 09:40 PM   #6
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Ginger Snap HB User
Re: Actiq and problems getting it.

Good Luck getting a 90 day supply if you have trouble getting a 30day supply. I do have cancer so my Actiq prescription has not been a problem. I have NO insurance and get my Actiq from Cephalon's patient assistance program. I received a letter saying the program would be discontinued on Oct 1, (I got the letter Oct 16). However out of the goodness of their little hearts, the program would cover me until Dec 29. I was originally approved through March 2007. I understand it is very expensive, my meds are between $9-10,000 a month. Who can afford that? So playing devils advocate, I see why insurance is reluctant to cover the meds. I just don't understand why you wait until the last day to refill your meds? Most doc's and pharms will fill a narcotic 5 days before you run out. They REALLY do not want you to run out of meds, so I am confused about the 1 day thing.Many mail order pharmacies such as Pharmacare (800) 238-7828 will fedex meds on a monthly basis. It will depend on you Doc willing to write a 90 day script and the insurance willing to pay for it. Call Pharmacare, they hve great patient care coordinators who will help out.

Good Luck and hope this helps
Ginger Snap

 
Old 11-10-2006, 03:55 PM   #7
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msswank95 HB User
Re: Actiq and problems getting it.

on her other posts she said that her insurance wouldn't let her get it early because they said she shouldn't be out and then she she is out they make her wait for another doctor approval.

well, i am glad she finally got them!

 
Old 11-10-2006, 11:20 PM   #8
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Re: Actiq and problems getting it.

Please don't get me wrong. I do thank GOD daily that my insurance covers this medication. I know how expensive it is because my grandmother died of bone cancer and she had to pay cash for it because her insurance would not approve it, then finally after she had already passed away they decided to reimburse my grandfather for them, which was great then but it would have been nice earlier. So yes I am very thankful for them. I really doubt that my insurance will allow me to get the 90 days, but its worth a shot. Especially with as much trouble as it is every month.


(Ginger Snap
to answer your question about why I wait until the last day. As I said before if I try to get it filled before the 30 days, then they tell me oh, well you should have "x" amount left, so you don't have to get them today. Even after reading them the information from the Actiq patient leaflet that says to get the medication early so that you don't run out, they don't care. And I understand that this is because of how expensive it is, but its also hard on me to wait until day 30 and try to get them because inevitably something happens and I have to wait. And then I have to get my husband to take me back to the pharmacy again the next day ( because I can't drive now) and thats a waste of gas. so its just annoying all around. I am so sorry cephalon is discontinuing the program that you get your actiq through. Have you tried any of the RX assistance programs? Or, does your state have any programs like medicaid. I lived in TN and when my grandmother was alive there was a program through the health dept. for "indigent" people. Basically for people with little or no help. She was able to get a few of her meds through that. Just a thought!!!


Getting back to the actiq the good this is before this week I have never had to wait more than 1 day. I can grin and bear it for a day, but this time I went almost 3 days, and that was too long. I was starting to go into withdrawel, which made everything that much worse. I am going to call my insurance monday and see exactly what I need to do from now on. The lady I spoke with the other day said to have the doctor make the approval for a year and I would not have problems, even though my doctor has never done this before. And I want to talk to a supervisor or someone who knows exactly what is going on because this week I spoke to 3 different people and they all 3 gave me different answers, even the lady at my doctors office got a different answer from them. So we will see.

At least I was able to get them, so when they discharged me from the hospital last night I was able to have one and get some relief and rest.

Thanks to everyone for all your support and suggestions. This place is truely a miracle for me.

 
Old 02-22-2007, 07:53 PM   #9
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Re: Actiq and problems getting it.

npainfla

Congrats on getting your medication. I have had troubles with pharmacists, nurses, etc., when I am out of a medication and NEED it then and now. You must be FIRM. First of all, regardless of insurance, you can have multiple opiates at one time. One time at a pharmacy, 18 days after I had 90 percocets, I tried getting 90 Lortab 7.5's filled. He said that he couldn't fill it because i "just got the percocets." I ran out early because I was in a car accident and the ER told me to continue taking my percs, but two at a time, and gave me no additional pills. I asked the pharmacist how much the meds were, and he said $25, so I said I'd pay for them. He told me I'd lose my Insurance if I did that (I am on welfare insurance for health sustaining medication). I picked up my cell phone right in front of him and called my case worker who said he he had never heard of such a thing. The pharmacist apprehensively let me pay cash. See, it comes back on the computer as a "duplicate" but any pharmacist knows that percs and lortabs are different. All the pharmacist has to do is override it. You also need to find a good, reliable pharmacist and tell them everything that's wrong with you so you have good treatment from them. Believe me, I've been through all of this. Also, I had been alternating lortabs and percs for half a year before that incident. I will never go to that pharmacy again.

If I were you, I'd ask your doctor for Roxicodone 30 mg's for B/T pain, for just these cases, so you have something to fall back on if this happens again. It is very strong, even more so thatn Oxycontin, i believe, in some ways, because it is instant release but only goes up to 30 mg's.

As for the hospital, 2 mg's of morphine is BS. I do not know about the liquid IV form, but two mg's of oral percocet is twice as strong as 2 mg's of morphine. When I go to the ER, i am also treated like a junkie, but try to be firm and lightly threaten to file a compaint (most er doctors, even if they think you are a pill seeker, will just give you the meds to advert controversy; they have no idea who you are, if you know powerful lawyers, etc) When I pull a muscle, i request a combination IV of Demerol, Diuladid, and Vallium, along with two oral percocets. If they try to give me Tylenol and a shot of Toradol, I tell them no way.

Sorry I have gone on for so long, and I hope you do not think I am psychologically addicted. I am like you, i NEED these meds, and I am so happy that you and others on this message board understand this. Junkies and the media, and people who abuse meds make it hard for us to get pain medication without a stigma attached.

I have two many pain problems to mention here, but let's just say my lower back is practically destroyed and i am in chronic pain. I am on:
Duragesic 100 every 48 hours and 2 Roxicodone 30's for Primary Pain
And Hydrocodone 7.5's and Roxicodone 15's for B/T pain, as well as Neurontin for sciatic pain.

Hope this helps, hang in there and dont feel stigmatized

gwf

 
Old 03-24-2007, 08:09 AM   #10
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Re: Actiq and problems getting it.

I know exactly what you mean. I have been taking Actiq for a few years now along with the Fentanyl patch. I have had alot of trouble with insurance, having to get prior approvals and have my doctor send it over and everything. My doc has even sent it and i kept waiting and the insurance would have the nerve to say they never received it and i would have to call back and have the doc resend the form by fax - which they are not happy to have to do a 2nd time. I hate having to call them and ask them again, but what am i supposed to do. Now i just got a letter from the insurance saying that the Actiq is being used "off label" not for cancer pain. I am having my doc send a letter trying to get it as medically necessary since i have been on it for years and it is the only thing that helps, but what am i going to do now? It's crazy! How can they do it after all these years of getting it, they just don't want to pay for it, i know its really expensive. I hope the same thing doesn't happen to you, but i think alot of the insurances are stopping it for pain use unless its cancer pain, i have chronic pain which is really bad and my doc gave it to me because he said cancer pain is comparable to chronic pain, thats how they measure it. Sorry, you are going thru this, but you definetely are not alone.

 
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