Sunday, February 21, 2010 Migraines for 38 years asks

Q: Are any efforts being made to make it possible to prescribe Actiq (Fentanyl) lozenges for migraines?

The product warning info was changed recently to block use of this medication for "headaches, including migraines". I guess the people at the FDA have never had migraines that did not respond to other medications. Actiq lozenges were used to relieve the pain of migraines that were the ones that made sufferers go to emergency rooms. Actiq allowed migraine sufferers to relieve their excruciating pain without the pain, trouble, and expense of going to an emergency room.

I've suffered from severe migraines for 38 years, since I was 16. When I have a migraine, my family suffers, too. At least with Actiq, I could do small things, like heat up some food or talk to my husband and daughter, and maybe help with homework.

I am so tired of being in pain and other people deciding that I can't make use of pain medication. I have been treated for my migraines by a headache specialist and I've tried just about every preventative regimen. I had finally gotten to the point where my migraine frequency was reduced and at least I didn't have to be in severe pain. Actiq was a rescue medication that made me feel that I had some control over the pain. I didn't have to worry if I woke up on Christmas Day (or other family or special occasions) with a migraine. Even if it was a severe migraine, by using Actiq, I would be able to eat dinner with my family and open presents.

Is anyone doing anything to get the FDA to reverse this change?

Sue

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Answers (2)

Teri Robert, Health Guide

2/22/10 11:36am

-:¦:-•:*'""*:•.-:¦:-•*Welcome to MyMigraineConnection!*•-:¦:-•:*'""*:•.-:¦:-

The short answer to your question is "no." For that to happen, there would need to be clinical trials conducted to show that Actiq worked well, was safe, and was an appropriate medication for Migraine. Since there are already generic forms of this drug, it's extremely unlikely that the would conduct these trials.

An even bigger reason this is unlikely to occur is that there is now evidence that ANY use of opioids --including Actique -- or barbiturates and frequent use of triptans and NSIADs are associated with increased risk of transformed Migraine. See Transformed Migraine - Risk Increased by Some Medications for more information on this.

I'm not, in any way, dismissing your pain or how it impacts your life. I've lived it myself.

Are you working with a doctor to find an effective preventive regimen? Effective preventibe regimens not only reducer the frequency of our Migraines, they can also make the Migraines we do get easier to treat and cope with.

What medications have been prescribed for you for when you get a Migraine? The best goal is generally to abort the Migraine, to stop the Migrainous process in the brain and all the symptoms along with it. Have you tried any of the Migraine abortive medications -- Triptans such as Imitrex, Maxalt, Zomig; or Ergotamines such as Migranal Nasal Spray and DHE-45?

If your doctor isn't able to help, it may well be time to consult a Migraine and headache specialist. It's important to note that neurologists aren't necessarily Migraine and headache specialists. Take a look at the article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists.

Hoping you find effective treatment soon,

Teri

3/23/10 12:04am

Best of luck @ your appointment. Please let us know how it goes. E

2/22/10 11:04am

I'm sorry to hear about your pain. I can certainly relate because I have similar type pain. I still use Actiq....Thank God.

The only changes that have been made re: Actiq (and generics) is that they've been dropped from insurance coverages. They say it's because of the indication, but it's really becuase of the high cost. They had no problem covering Actiq when it was cheap. Unfortunately, the manufacturer (Cephalon) has raised the price many times over.

Your Dr can still prescribe you Actiq, but you'll have to pay cash for it at the pharmacy....i.e no insurance. That's what I do.

You may explore a compounding pharmacist. I know of several fellow Actiq users who go this route.

Also, I would recommend you go to the pain management board on healthboards.com....Lots of good people there to help.

Best of luck to you and again, I'm sorry.

Regards,

2/22/10 11:07am

I forgot to mention that your Dr can continue to prescribe the med...It's called "off label" prescribing....Any Doc can do it for any reason...Perfectly legal. Docs do this all day every day with a bunch of meds. Just becuase your insurance won't pay doesn't mean he can't prescribe it.

Best of luck to you.

Teri Robert, Health Guide

2/22/10 11:38am

Off-label prescribing is very common. You're right about that. Without it, we'd have only four medications to try for Migraine prevention.

What I'm not sure about is off-label prescribing in a situation like this where the FDA approved prescribing information / labeling specifically states it's NOT to be used for Migraine or headache. It may not be legal to prescribe it for Migraine given that.

Teri

2/22/10 11:49am

I don't mean to be argumentative, but you are dead wrong. The pain clinic I go to prescribes Actiq to many people with migraines, including those with chronic head and face pain. The FDA permits Docs to prescribe any medicine for any reason. When a Doc prescribes Oxycontin 3x (vs 2x), that's "off label" because it's not what the indication is. Just a quick example.

The big obstacle is insurance. Again, insurance is using the indication (cancer only) as an "out" to not pay. They paid just fine when it was cheap. You should also be careful using the term "migraine." There are a lot of people who get horrible headaches, have head and face pain, and use the generic term "migraine" when it's really not. You might have better luck getting insurance coverage if your Dr writes it up differently.

I would talk to your Doc about the prospect of you either paying cash (for the generic) or getting a compounded version. The compounded pops are very cheap. I also know some people who make their own....They are prescribed liquid fent ($7 a bottle) and they use the dropper that comes with it to put the fent on candy, like a smartie.

A new generic is coming on board early 2010 from Malinkropt. Barr / TEVA makes a generic now. The generics should be much cheaper than the brand.

Best of luck to you.

Regards,

Teri Robert, Health Guide

2/22/10 12:14pm

Let's NOT be argumentative then, E. I didn't way it wasn't legal. I openly said I wasn't sure. No reason for you to go on the defensive. We're all on the same side here.

Teri

Migraines for 38 years

3/22/10 3:14am

Thank you all so much for the comments. It was great to get such compassion and support, along with your shared experiences. The doctor who I am seeing is a migraine specialist. I think that I have tried every single one of the migraine preventatives, with either no success or with uncomfortable side-effects. I'm going for a follow-up appointment with my doctor tomorrow and will see if I can get any additional info from him. I am also looking at going to a pain clinic. It just takes a long time to do these things. I have a 14-year old daughter and try to have as normal as I can with her and my husband. Somehow, the migraines make everything more difficult. Best wishes for all of you, Sue

Q: Are any efforts being made to make it possible to prescribe Actiq (Fentanyl) lozenges for migraines?

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