This Is MS Multiple Sclerosis Knowledge & Support Community

Hey all, recently made a longer post about this in the introductions thread, but to make a long story short, my wife has been suddenly been diagnosed with MS. A week ago life was normal, now every waking moment is disease, disease, disease.

Sorry, going to keep this brief. Probably shouldn't do too much typing while in such a terrible mood. You've all no doubt got more than enough worries of your on and I sincerely appreciate any advice you might have to offer.

Our doctor gave us a prescription for Avonex. It's absurdly expensive and while I previously thought we had some exceptional health insurance coverage through our jobs, they will not cover the drug. Currently investigating any other methods of funding this thing. In the meanwhile, I tried looking up the answer to what I thought was a simple question, but no solid results yet.

What is the cheapest MS treatment? I want to give my wife the absolute best thing we can, but there is no way on earth I can afford Avonex at the raw price I was quoted at the pharmacy today. Are they all like this? How on earth does anyone medicate for this condition?

i was covered for my $20,000/yr pharma possibility. but i opted out of the drug treatment route and focused on addressing the underlying nutrient imbalances. tests revealed major problems which i have since fixed. to date i have not taken any pharmaceutical products for ms. i've heard of certain drug companies having programs for folks that can't afford the product. someone else may chime in with specifics.

Here are some notes that I've taken over the years on medication costs. Please feel free to add your pharmacy's
quoted price and I will add it to the notes. Note that older prices are likely quite outdated.

Since the experts do not know the cause of MS (there are no proven theories – only hypotheses), there is no really effective treatment or medication for it. All of the FDA-approved drugs are extremely expensive and have low effective rates – comparable to placebo.

I have excellent health insurance; I used Betaseron for three years at first, but progression continued. Then I used Avonex for seven years; I saw no benefit to this one either. The side effects were extremely difficult. Then I tried Copaxone for less than a year – side effects were also intractable! Although my insurance will cover any of these MS drugs, I prefer to do without them. I think diet is just as effective for me.

I, too, thought I was trying the best thing with the medications; the pharmaceutical companies are skilled at marketing and persuading us that their drugs will "control" the disease. I do not think so! Until they KNOW what is going on in the disease, I do not think there is a drug solution for us.

@NHE

The quoted price for 3 doses of Avonex, out of pocket and without assistance, was $9,000. So, yearly would be $156,532.50, if I'm not mistaken. I could be, I'm pretty bad at math!

Weekly - $3,000
Monthly - $12,000
Yearly - $156,532.50

I will second every post so far.

I was diagnosed around 84, but had no noticeable symptoms for over 15 years. My experience after that is very similar to lyndacarol, only I wasn't as patient with the length of time on each drug. I did use Betaeron, Avonex, Rebif and Tysabri.
Fortunately, I also had excellent insurance and just had a $10 monthly co-pay on these drugs.

My regimen over the last few years has been the Wahls diet...going organic, lots of color veggies, etc. She does not believe in meds, but proper nutrition, nutrients, etc. As you go through the site you'll information about her. Dr. Terry Wahls has written a book and a does have a website.

If I had to do it over again (ahhh, hindsight), I would go with jimmylegs' protocol. I had polluted my body with the worst of foods for a long time: it is a hard habit to break!

The information that you could obtain from this site's contributors will amaze you.

Netbe wrote:The quoted price for 3 doses of Avonex, out of pocket and without assistance, was $9,000. So, yearly would be $156,532.50, if I'm not mistaken. I could be, I'm pretty bad at math!

Weekly - $3,000
Monthly - $12,000
Yearly - $156,532.50

Thanks. I've updated my notes. $3k/week * 52 weeks = $156k/year. The average cost per month is $13k.

wtf. i can't believe this world.

In the Spring of 2000 I was able to get a 4 dose pack of Avonex from my university pharmacy for $550. The current pricing is obscene.

NHE

disaster capitalism at work in health care. awesome.

jimmylegs wrote:wtf. i can't believe this world.

No kidding, for something that isn't even remotely near a cure, it's quite shocking. i guess I know now my my neuro was always so negative on the drug route.

NHE wrote:Thanks. I've updated my notes. $3k/week * 52 weeks = $156k/year. The average cost per month is $13k.

For me Extavia was $3500 / month with the Ontario Trillium Drug Benefit picking up $3400 / month and me $100 / month.

I suggested that if they pay me half, I'd turn in my OHIP card. They didn't think it was as funny as I did.

You have your answer Netbe - anything but pharmaceuticals.

If you're interested in taking one of the disease modifying therapies, contact your insurance company and ask if they have any multiple sclerosis drugs on their formulary and what the cost would be to you.

You can also programs like fingertip formulary (http://www.fingertipformulary.com/), but you have to register

maybe stem cells - if proven to be most effective long-term?? Curious why there's so few posts on the stem cell board compared to others. Is it only because travel to China is daunting? That i can understand (shake hands).

But after reading Robert Becker's book "Body Electric", that book got me hooked on the efficacy of stem cells (he was a genious, and the term "stem cells" hadn't even been coined yet!

I heard statistics, though, that 33% of people are healed by stem cells, and yet another 33% only somewhat healed, while the last third do not show improvement.

Which is why I so badly want the Stem Cell clinics to integrate L.I.F.E. or ROFES-style pictorial software, so they can see WHY some patients do improve, while others don't.
see http://lifesystemusa.com/sceensgallery/index.html

I haven't been here in a long time and I see it has been a couple years since your post. By now you may have figured out that there is not inexpensive way to be treated for MS!!! I hear most of the companies will help out if your insurance will not. I don't know where you live, but in the US we pay more for these medications than any other country. The price is not fixed so it continues to rise every year. The whole system at least in the US is not patient friendly and I am sorry to say it is all about money and politics.