Barr launches generic Actiq

Hi all,
Very interesting thread. I just wanted to share my experience with Actiq. I was very happy when my pain doctor and I discovered a medication like Actiq that worked for my pain situation. The first thing that I knew was not going to work for me was the amount of SUGAR in these things. Practically every person that posted results also commented that their teeth were rotting and were plauged with huge dental issues. I was not willing to take that chance so I found a great compounding pharmacy here in Palm Beach County that was happy to make Fentanyl lozenges for me sugar free. I eventually found the strength that was good for me and I have been very happy with them. They are the littles squares and I get them rasberry flavored. I have been getting 180 of them at a time and that usually lasts me 3-4 months. I also have BCBS of Florida and of course without a cancer diagnosis the cost is on me. I get the 1600 mcg lozenges and the script runs me close to $1000. That's roughly $250/month which I can swing. Blue Cross pays for my other pain meds so I don't complain.
One very serious recent setback has been the sudden unexpected loss of my pain doctor of 4 years. He is no longer practicing and am currently without a doctor. This loss was obviously devaststing for me. I have found one doctor so far that will prescribe my other pain meds but not my lozenges. Starting over from scratch with someone new is somthing I am not thrilled about doing but I have no choice. How do you go about finding out if a doctor will prescribe Fentanyl lozenges? By all means if anyone has some information that might help please feel free to contact me here or you can email me privately if you want. Thank you!
acman3960@aol.com

acman wrote:

Hi all,
One very serious recent setback has been the sudden unexpected loss of my pain doctor of 4 years. He is no longer practicing and am currently without a doctor. This loss was obviously devaststing for me. I have found one doctor so far that will prescribe my other pain meds but not my lozenges. Starting over from scratch with someone new is somthing I am not thrilled about doing but I have no choice. How do you go about finding out if a doctor will prescribe Fentanyl lozenges? By all means if anyone has some information that might help please feel free to contact me here or you can email me privately if you want. Thank you!
acman3960@aol.com

I don't have any magic formula for finding a new PM, but I would hit the streets to find a Doc willing to Rx for you. The # 1 rule in PM is "if its not broken, don't change it." You have to convince a Doc that you were stabilized and changing does much more harm than good. If it were me, I'd go to as many Docs as I could to find one who was compassionate enough to help me. One is out there, you just have to find it. Best of luck to you.

Thank you so much! I agree completely with your #1 rule. I will certainly stress that fact that I was stable with the medications I was taking because I really was. Stable and fuctional enough to continue working. I own an air conditioning company here in Southern Florida. Thanks for the advice and support. Much appreciated!

acman wrote:

Thank you so much! I agree completely with your #1 rule. I will certainly stress that fact that I was stable with the medications I was taking because I really was. Stable and fuctional enough to continue working. I own an air conditioning company here in Southern Florida. Thanks for the advice and support. Much appreciated!

Also, I meant to mention that when you talk to different Docs, the "approach" is everything. Explain why you lost your Doc and that if you hadn't needed these meds, you wouldn't have been Rx'd them. I'd also stress your working situation....That you own your own business and thus, you aren't some thug off the streets. In PM, one's "profile" is everything (or so the Docs say behind closed doors).

I'd also stress that in many cases, because you were "stable" on your meds, they permitted you to work and without them, that is now in question and your business may be at stake.

That's how I'd handle it.

Best of luck to you with this.

Anna M wrote:

I m going through the same thing been on Actiq for 6 years now 1/1/10 denied by Medco I am appealing at the ALJ level, I talked to a advocate lawyer she told me I am banging my head against a brick wall. since this is from the FDA she said we need to contact the manufacturer so they will broaden the label for all breakthrough pain. I am so mad I have several chronic pain conditions I will try and contact the manufacturer Barr or Cephelon or both maybe if we all do this it could work. I am still fighting my appeal all the till the end I can't live this way in constant pain, please try to call the manufacturer it might help sooner than we think!!!

. Well that might be a good idea. You said you live in Charlotte nc, can you tell me what your meds are , what your condition is and who your pain mgmt. Dr is ? Any help would be appreciated .

Anything is possible1023 wrote:

I have had 3 different insurance companies cover Actiq and I do not have cancer. Yes,they will cover it. It's all in how you write your appeal letter, the description you write as well as other meds you have tried. PROVE YOUR CASE! DON'T GIVE UP! YOU HAVE A RIGHT TO THE MEDICATION OF YOUR CHOICE GIVEN YOUR PAIN MANAGEMENT DOCTOR AGREES ITS THE RIGHT MEDICATION FOR YOU. I fought for family member with BCBS on this issue, had to go before a board out of town ...It was a jury type situation on that. However, I can tell you Aetna is covering Actiq. They were the third insurance company I had due to job changes etc..by this time I had been through all the steps many times. They denied my first attempt to fill a Actiq RX but I had a prescription covered by Aetna within that same week. You will go through the cancer denial and quantity limitations, prior authorizations and on but dont stop and they will pay for them with other medical diagnosis. Its all how you word the appeal. Research and document..Good Luck you will get them.
<quoted text>

Would love a sample letter like the one you used to get approval. They won't cover Actiq or Fentora for me anymore, using the "cancer" excuse. I can't take codeine, morphine and related opiates. Fentanyl is the only pain medication that works for me. I have to change patches every day due to skin breakdown and staph and I know I could use a lower dose if I were allowed something for breakthrough pain. Thanks for your post. It provides some hope.

Pam Simon wrote:

This is the only place on the net indicating that Part D will cover part of the cost of Barr's version of Actiq. At this poin, I haven't reached 65 and my current private policy provides me with Barr/Actiq (four boxes per month) for just the co-pay. I live in NC, if that makes a difference. I'd love to hear from folks who get any coverage of the drug under Part D. I'd also like to know if Part D covers part of the cost of benzodiazepines, like clonazepam, because I've been advised that it does not. Please post comments here.

I was on Actiq for several years until my Medicare Blue Cross Blue Shield decided that it wasn't going to cover this medicine. I go to a pain clinic in Winston and I have been on narcotics since my first major fall. I cannot walk without assistance and the nerve damage in my back and hips hurt so much that I throw up. We have tried every breakthrough drug available, including 3 pain pumps which failed miserably in staying put in my body. I have had injections, laser treatments to destroy the nerves and still I suffer. My life at 56 sucks..Sometimes I just stay in bed all day. Please tell me why I can't have the Actiq for less than $3000.? Can someone help me? Point me in the right direction? Sincerely, P. Kelch

P Kelch wrote:

<quoted text> I was on Actiq for several years until my Medicare Blue Cross Blue Shield decided that it wasn't going to cover this medicine. I go to a pain clinic in Winston and I have been on narcotics since my first major fall. I cannot walk without assistance and the nerve damage in my back and hips hurt so much that I throw up. We have tried every breakthrough drug available, including 3 pain pumps which failed miserably in staying put in my body. I have had injections, laser treatments to destroy the nerves and still I suffer. My life at 56 sucks..Sometimes I just stay in bed all day. Please tell me why I can't have the Actiq for less than $3000.? Can someone help me? Point me in the right direction? Sincerely, P. Kelch

I'm sorry that you suffer so much. As others have reported in this thread, the best alternative to the brand (or generic) is to get the med compounded. Have your Doc contact a compounding pharmacy and arrange to get the med that way. They can make the pops in any flavor you want. The cost is much, much less, although still a little pricy, but at least affordable.

Good luck and God bless!

I want to know what entity has decided that cancer pain is the only pain that qualifies a person to be able to afford Actiq or its generic?! Are these folks in pain? Do they have cancer? Do they have nerve damage? Do they have multiple surgical fallout pain? Can they walk get out of bed without wanting to cut half of their body off? Do they cry because their backs have nerves crushed by falls and have been on every type of narcotic since 1994 and finding out that there are a select few that can be tolerated. Actiq was the best breakthrough medication that I could take. If the "powers that be" don't experience "PAIN" then how can they determine which pain deserves to be treated by a drug that so many have benefitted from and yet so few qualify. PAIN IS PAIN!!! The brain perceives it the same way, NO MATTER WHAT IS CAUSING IT!!! The same neuro transmitters are firing!!! It is the same chemicals rushing through the nerve cells to the brain and telling the it that the body hurts enough to cause vomiting, dizziness, weakness and malaise. In my own personal experience every person that I know who committed suicide did so because of pain!! They felt so much pain that they couldn't take it anymore. And not one, not even one, had cancer. Including 2 personal physicians.

And could someone tell me what is in this drug that makes it $25. a dose? If health insurance is purchased to keep a person healthy, strong and pain free; then isn't it antithetical to keep it almost unattainable by those who need it most.

I don't mean to be sarcastic, but the answers to your questions are in posts # 42 till the end.

The FDA gave Cephalon approval for Actiq, but made them put the "cancer only" indication on the drug due to it's extreme potency. When it was first released, it was very cheap only almost all insurance plans paid for it. Doctors can write for any drug they want to, regardless of the indication. As my doc says, "pain is pain" and the human body cannot distinguish between types of pain. Who's to say that cancer pain is worse than someone with a unstable spine, a burn victim, a severely injured Vet from war, & etc.

Once Cephalon got lots of market share (and patients hooked) on their med,(they were fined heavily btw for off label marketing to the tune of hundreds of millions), the started to raise the prices. Once they got to a certain point, it started showing up on insurance companies radar screens. Thus, they started using the "cancer only" indication as an out to stop paying. Actiq went from a couple dollars a dose to well over $20.

Once a chronic pain patient has been on fentanyl for a while, their tolerance skyrockets and not much else will work. Cephalon knows this and has taken advantage of the situation by raising prices. The went through lots of increases in a short period of time.

If you absolutely need the drug, find a compounding pharmacy who will make it for you. It's still expensive, but affordable.

Good luck.

I have been on Actiq since mid 2010, take 1600, 6 times a day. It has been one of the best pain meds for migraines, my breakthru pain, and all of my other chronic pain. I have been on so many different pain meds (for over 20 years)but now I have gotten to where just the thought of pills makes me so extremely nauseous. I can't swallow them without throwing up. Actiq made such a difference. I am on medicaid and so far no problem. They just won't pay for more than the amount I get, but I am so grateful for it. My doctor had to petition to get it, but I got them. I just hope that they don't stop allowing them. I feel so bad for the ones on here that are not able to get them. No one really know what chronic pain is until they experience it.

It is terrible that insurance companies won't cover them and how the makers of it make the cost of it so expensive. Sometimes I am afraid to carry them out of the pharmacy. I am afraid if anyone knew that I had them they would try to steal them from me.

They have really helped me so much that I am able to start trying to start my own business and then eventually be able to get off of disability. But reading all these posts scares me. If I am able to get off of disability and medicaid, I'm not going to be able to find an insurance to cover them, so I'll be back to not being able to do anything again.

My problem right now is trying to find another dr. Someone misused their prescription and they came after my dr and took her license away for now. Found a Dr I am going to on Monday, but he is going to only give me half of my Actiqs.

I'll be praying for ya'll.

teetee66 wrote:

<quoted text>
If you don't have ANY insurance, Cephlon, who makes the Actiq and also the Fentora, they have a program to help you get free or almost free meds. of course you have to show proof of income and what not. I have a low income, but I have insurance that won't pay for those drugs, but Cephlon's program can't help me. Contact them, you have nothing to lose.

My info states Cephalon does not assist with Actiq. It covered my Fentora as I had no insurance until I had to go on disability(the low income type) and have Part D that will not cover it. So Cephalon dropped me. It appears if you have any insurance coverage at all you are completely hosed. My Part D is thru medicare and they have denied me twice. They made me take methadone and morphine sulphate first. Methadone is a terrible drug to take. The shelf life is 36 hours and it helps the painf for only 4-6 hrs. So...people die. I did this tho. I also took the morphine, but they denied me again because they need dates, dose, duration and my dr did not provide to them.. I have a disease that fentanyl only works for. I did not want disability. I had to because of losing 5 jobs in a row because of my health. I get 1,056 a month. With rent, utilities I can't afford groceries. However, just because I have part D (Bravo) Cephalon will no longer help me.

Deb wrote:

Does anyone that uses actiq still have any teeth in their mouth, I know 5 people that have been on the drug, none of them have 1 tooth left.

NO!!! I lost all my teeth. They crumbled. I now have a full set of dentures that I spent my disability back pay to get and cannot eat with them. Life is grand. I used to know the statis9786tics of people in chronic pain that cannot get medication and commit suicide, but I no longer have the info. Losing your teeth alone should tell doubters that a person does not take it for euphoria. I don't get euphoric. Losing my teeth was so painful no pain medication worked. Until they were pulled, it was awful. This is now listed as an adverse reaction. It wasn't when I started. Fentora is the sugar free alternative. Stronger, but does not last as long.

Reading through the posts, it appears I could not afford compounding either. If I stuck with Fentora it was 4 boxes of 800mcg. If I go back to Actiq he is cutting the dosage back so it will be 800mcg 4 boxes. If some do not know, Fentora and Actiq are different in dosage. I should be on 1600 mcg Actiq to be equal, I believe. I can't afford much. I get 1056 a month disability and with rent and bills, I go without food.

teetee66 wrote:

Mistie,
I feel your pain.lol bad joke. but really I do. From the day. BCBS turned me down for not being lucky enough to have cancer,(If we are going to a ligit. pain clinic, there is a damn good reason we are there, I even sent doctors letters etc) it took two years for me to find the compounding pharmacy to make the fentanyl lozenges.(they don't make actiq) The downfall: Its not cheap. Of course its much cheaper than a regular pharmacy though. Good luck. I hope you find relief. Teetee

My email is jjohns217 @comcast.net if you have any compounding info you could help me with. I live in PA. Thank you.

we also live in Pa. even our pm dr. could not reccomend a compounding pharmacy in our area. if anyone knows of a compounding pharmacy in Pa., i would surely appreciate the info. thank-you!

Jojo, I think you might have got it backwards, fentora is actually almost twice as strong as actiq. I have found that the compounded fentora is even stronger than the "real" deal. I get 90 lozenges, 500 mcg, a months supply for about $225 plus $10 shipping. Before BCBS cut me off cold turkey, I was getting 120 tabs, 800 mcg,$100 co-pay. I live in New York, the compounding pharm is in Conneticut, my pain doc faxes and then mails them the script, they have my credit card on file, and we do the same routine every month. The pharm is called Bryce Labs 1-800-798-7279. They have been great. I believe they price it according to quantity,the more you order the less it is. Don't quote me on that though! Lol. I hope this helps and your pain docs will coop with you! God bless!

Rab694 & jojo,
Is your pain doc going to be willing to use a compounding pharm that u find? I would call Bryce and make sure Pa law allows them to do business with your state before telling your doc, this way he can't throw up a roadblock, if u already checked it out. That is what I did for new York state, the compound pharm being in Conneticut. I wish you all good luck. Also, if they can't do business with your state, ask them if they can recommend a pharm that can help you. All the best, God Bless!

teetee66. Great information about compounding fentora. Have you found that the 500mcg compounded is roughly equal to the 800mcg brand you were getting? Also, is this why your qty is less? Does the compounding pharmacy do compounded Actiq?

Thxs!