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        New Message Board Archives >> 2003 Posts >> How many are enough?
        
(Message started by: thsa/simon on Apr 16^th, 2003, 4:22pm)

Title: How many are enough?
Post by thsa/simon on Apr 16^th, 2003, 4:22pm

Ok all, I need an honest answer.

I have started my crusade with the insurance companies and the FDA to start viewing CHs as a seperate entity from migraines. Let's face it 6 injections a month is a mockery of the affliction we all suffer. That being said, I have started my queries to the FDA and Tricare to get their policies changed. I know that this will take some time, but as a physician I do carry a little more clout.

With that being said, how many injections a month are 'enough'? I am thinking 60/month. Follow me through on this.....

If I were a migraine sufferer getting 6 imitrex a month for 2 years, that would be 144 shots. As an episodic sufferers that gets the 'average' 6-8 week episode every 2 years, that is only 120 shots...OMFG I saved them money!!!....Don't worry chronics, one thing at a time.....let's get the foot in the door to start.

Oh, and wish me luck.....I've dealt with these guys before and haven't lost yet...here's hoping =)

simon

Title: Re: How many are enough?
Post by Big_Dan on Apr 16^th, 2003, 4:25pm

Hmm... you should also point out that even some episodics don't use all that many....

... I for example, have only used 15 or so in the past two and a half weeks.....

... that may not help your cause though....

-Big Dan

Title: Re: How many are enough?
Post by Karla on Apr 16^th, 2003, 4:43pm

But there are people being hit up to 8x a day, every day. Make sure you aim high. 30 days X 8 ha = 240. That is just for a high end eposodic. Imagine what a high end chronic needs. Stress there is an upper and lower range. 2 a day is just as much a joke to me as 6 a month. I am uncovered and still at the mercey of the beast.

Title: Re: How many are enough?
Post by Roxy on Apr 16^th, 2003, 4:47pm

on 04/16/03 at 16:22:03, thsa/simon wrote:

Don't worry chronics, one thing at a time.....let's get the foot in the door to start.

I know you didn't want answers from chronics....but I just have to throw my two cents in.

I refill my trex vials every five days. That's 30 vials a month. I get three shots out of every vial. That's 90 shots a month. I get hit anywhere from 5-8 times in a 24 hr. period, but I only have to use the shots at night, during the day, I can usually abort them with 02 or other methods. Usually, I can get by with 2 shots a night, but it has been as high as 8. Over the month this number seems to even out, and I end up breaking even with the number of shots after a 30 day period.

So, for me...if I don't get the full 30 vials, I'm in a world of hurt. So I think your number of 60 is good. It would all depend on if the person splits the shots up or not.

Tracey

Title: Re: How many are enough?
Post by jonny on Apr 16^th, 2003, 4:56pm

If you could get the drug companies to make the shots already split they would be cheaper and you could get more a month.....Talk to Bob P about that.....he talked to them and they said.....NO!!!!!!

...............................jonny

Title: Re: How many are enough?
Post by Frank on Apr 16^th, 2003, 5:04pm

I am episodic, but my cycles do tend to hang on for a long time... I am in my fifth month now (typical). Oxygen works for my less than Kip-7 attacks.

As long as I have that, 15 Imitrex injections per month would be about right.

Title: Re: How many are enough?
Post by Bob P on Apr 16^th, 2003, 5:18pm

I spoke with Glaxo quite a while back about making a 1/2 dose injector for us. They said they didn't have any plans to change the dosing. They did send me the stuff in the OUCH Library / medications / imitrex about not reusing needles and the effectivness of the 6mg dose.

I think 60 is a decent number especially since the FDA has only approved it for 2 each, 6mg shots in a 24 hr. period. Having to get additional testing on more frequent dosing may be asking too much. If we could just get them to cover the 2 per 24 hours we'd be a whole lot happier.

BTW - When I hit Glaxo for the convention grant last year I spoke with the marketing manager. He didn't even know Imitrex was approved for the treatment of cluster headache. He advised my to say in the grant request that it was migraine education because if I said clusters they may turn it down. Granting it for clusters would be like advising the use of their product for something it's not approved for. When I shared their own material saying it was ok for clusters, he got pretty quiet.

Title: Re: How many are enough?
Post by catlind on Apr 16^th, 2003, 5:19pm

Well I'm episodic, and I'm a tryandgetcare sufferer.

I can't use immitrex, but I had great luck with maxalt MLT. THREE pills. That's all I get. 3 lousy pills, and it takes 2 to abort a CH at peak. 3-8 hits per day, and only 3 pills.

I know you are working the trex, and that's a great start. Is there any hope for the other triptans? We do not suffer our headaches in the same pattern as a migraine sufferer. My mother can have 6 immitrex pills last her a year for her migraines.

Just my 2 cents worth.

Cat

Title: Re: How many are enough?
Post by cbolony on Apr 16^th, 2003, 5:37pm

Quote:

I am thinking 60/month

A Doc my insurance company only gives me one statdose a month.I get 3-4 cycles a year lasting 6-8 weeks hit 3-5 times a day in cycle.I go begging doctors for samples.I use 2mgs a shot so i need about 20-30 statdose samples a month.Last cycle ended march 6 next one in may or june.Got about 18 statdose samples
right now going out to beg for more.What a way to live.
Btw i pay 920.00 a month for health insurance

Title: Re: How many are enough?
Post by don on Apr 16^th, 2003, 5:53pm

Well your math is sound, logical and a benefit to sufferers which I believe are three reasons the insurance companies wont go for it.

I completely agree with the 60 per month but that adds up to a lot of dough. I would set my sights on a smaller number to throw out the bait.

Sooner or later Glaxo is going to have to liscense the rights to produce a more cost effective generic. Bob P might know the date. Thats when I would lobby for the higher numbers.

I think insurance companies would reject higher numbers out of hand and with out discussion.

Title: Re: How many are enough?
Post by catlind on Apr 16^th, 2003, 7:04pm

Bob and Don,

with all due respect, if it were either of you or myself or any other 'regular' clusterhead going after it, I would probably agree. However, our doc simon is going to do some lobbying. I can't speak in general, but I know that when a doc lobbies tricare (military hmo)they generally listen ALOT more than if it comes from the patients. Just my thoughts. I don't know what the real world is like though ;)

Cat

Title: Re: How many are enough?
Post by jonny on Apr 16^th, 2003, 7:34pm

Real world is forget it.

One doc or two.

.....................................jonny

Title: Re: How many are enough?
Post by don on Apr 16^th, 2003, 7:37pm

I agree they will liten more to a Doc than a patient but they will listen even more intently to their spread sheets

Title: Re: How many are enough?
Post by achinghead on Apr 16^th, 2003, 8:26pm

I think one a day used with the tip on the left is the absolute minimum.. and thats if its used with the tip. I recently got my insurance co to give me unlimited amounts(so we'll see). My neuro today gave me a script for 30 with 2 refills and told me if I need more to call him. But as far as how much... I think it depends on how bad the cycle is but absolutely no less than 1 a day. Good luck