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Results are in and the Doc has spoken....

Posted: Mon Mar 02, 2009 12:05 pm
by Bubba
He said definately MS. Wants to start me on copaxone. HOWEVER, the pharmacist said that it costs about $85,000.00 a month and insurance says noway! Now what? :(
Any alternatives?
Doc said my MS is at about a "2" on a scale of 1-10


Pharmacist called me back, 22k yr not 85k a month

Posted: Mon Mar 02, 2009 12:15 pm
by Bubba
Pharmacy just called... My insurance WILL pay for the meds....

Posted: Mon Mar 02, 2009 12:22 pm
by jimmylegs
$85K a MONTH?! i was outraged at the idea of $22K a year.
glad your insurance is going to cover.
love it how health care ppl make mistakes with your info when you're dealing with news like this.

Posted: Mon Mar 02, 2009 12:48 pm
by skydog
Be glad you have insurance !!! I don't but may be a blessing in disguise... going the natural route. Take care Mark

Posted: Mon Mar 02, 2009 12:53 pm
by Bubba
The neuro gave me a choice of meds, kinda like "pick a card - any card". So , remembering a survey I had seen on here, copaxone was the winner by about 5% if I remember right. Thats why I picked it. Do you guys have any preferences? There are so many to choose from?

Posted: Mon Mar 02, 2009 1:45 pm
by mrhodes40
Hi Bubba,
glad you got your answer, now you can do something about it!

Copaxone is easy to take from the standpoint of side effects, there are not so many. The interferons cause flu like reactions, my friend just switched TO rebif from copaxone and she is NOT happy; severe body aches, sleeping headaches etc is what she reports.

You do have to get used to doing a shot every day, but they give you a little injector that all you do is push a button so it is not too hard.

From my experience it is a good aintinflammatory--it controls my RA as well as keeping my MRI's clean, but I have certainly progressed on it, so it does not stop MS.
marie

Glad you have insurance, mine pays 22k a year for the drug, the 85,000 has to be a mistake, he must have thought of something else....

Posted: Mon Mar 02, 2009 2:54 pm
by Bubba
Thanks for the info... I put the Rx on hold till I do some more research.

Posted: Mon Mar 02, 2009 3:23 pm
by cheerleader
Sorry it's official, Bubba. Hang in there, and ask lots of questions.
Copaxone isn't a cure and won't stop progression...it just claims to slow down relapse rates in RRMS by training naive T-cells not to attack myelin and retraining t-cells. JH has revimmune folks on it, in hopes of keeping the t-cells away from myelin. As Marie said, it also keeps inflammation down. It costs $40 a day for a 20mg. shot or $1200 a month to buy outright. Insurance should cover it. My husband's neuro said men who presented as he did, with brain lesions and a similar profile, did well on copaxone. That's why we went with it.
Also, the scale your doc mentioned is a disability scale, also called EDSS (expanded disability status scale) docs use to measure your disease progression.
best to you-
AC

Posted: Mon Mar 02, 2009 3:33 pm
by jimmylegs
i was reading that glatiramer acetate is a synthetic combo of 4 amino acids that mimic myelin.
i remembered that part of my big successful hand restoration was lecithin, apparently also a building block of myelin. that was along with the mega b-complex and vitamin e regimen i was on for a few days in '06. i still have an unopened bottle of lecithin in the cupboard from those days, suppose it can't hurt to chuck it in.
i will have to look up where lecithin occurs naturally in food, interesting

Posted: Mon Mar 02, 2009 4:22 pm
by CureOrBust
Bubba wrote:Thanks for the info... I put the Rx on hold till I do some more research.
Research is good. The one thing I regret when i was first diagnosed, was that I accepted the Dr's recommendation, and went straight onto Rebif without any research into the alternatives first. Rebif and me were NOT friends, side effects were worse than my symptoms. I ended up stopping, and am now on oral off-label Lipitor (as well as others), which I think is more effective on me than Rebif; but still not a cure. I also would of tried LDN and the AbX's etc etc etc before I accepted the injections route. But maybe that's just me and injections.
jimmylegs wrote:i still have an unopened bottle of lecithin in the cupboard from those days, suppose it can't hurt to chuck it in
I take lecithin daily, as it also helps increase Uric acid levels. As well as the hope it is also feeding the building of new myelin.

Posted: Mon Mar 02, 2009 4:35 pm
by sou
Hi.

Lecithin comes from the ancient greek word "λέκιθος" (pronounced lekithos) which means "the egg yolk".

It is contained in egg yolks (surprise!) and soya beans.

sou

Posted: Mon Mar 02, 2009 4:42 pm
by chrishasms
Call Shared Solutions or Teva, the folks with Copaxone, ask them if you are qualified to get your shot for free. Teva started a program I am on where I don't pay for my shot because they say I am economically not able to.

I'm really surprised somebody on Copaxone besides me isn't getting it for free.

Posted: Mon Mar 02, 2009 5:10 pm
by Bubba
I think I have still not realized what I am dealing with yet, just dont think it has hit me yet....
I guess its like high blood pressure, you dont take it seriously cause you cant see it, feel it, touch it, ect.... :(