NeuroTalk Support Groups - The rising cost of MS drugs

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- - The rising cost of MS drugs (https://www.neurotalk.org/multiple-sclerosis/148623-rising-cost-ms-drugs.html)

a weird fear that the person wont believe that I have MS and will hang up on me when I ask for it.

Sometimes when I try asking a doctor for anything, my mouth gets all weird and the words I'm trying to say dont come out right, and then I end up looking like a nutjob or a drug addict, or something.

I think I'll try calling that doctor this week and see if I can be coherent and get it done already.

Quote:

Originally Posted by SallyC (Post 763028)

Idiot, We gave you the name of a Doc who prescribes LDN. Whuz yer problem?:rolleyes::D

Sally, you're waaaaay to meek and mild!! :D :rolleyes:

Quote:

Originally Posted by Erin524 (Post 763065)

I don't see where there'd be a problem with you asking for LDN. It's not a narcotic. It doesn't make you high, or feel any different. The only difference you might feel is less MS symptoms.....and that would be a good thing.

I've asked a few local doctors for it, and they think I'm nuts for asking.

also a bit scared that if I do get a Rx that it wont work for me, and I guess I'm afraid of the potential for being disappointed. I think I'll try calling this week tho to ask for it.

RW,

Your post (below) explains why I am no longer on any MS medication. Even with insurance (based on our tax calculations for 2010, with the carry-over losses from MS medication fees) I had to spend over $170,000 for three years of MS medication:eek:. These medications, with thier minimal efficacy rates, have bled us dry, but we learned a pricells lesson.

I am just letting natural selection play its role and feel so much better (mentally and physically) about it.

Big Pharma is playing on the hopes of the suffering, just like the old-fashioned snake-oil salemen did 1800's wild west. It is immoral in my opinion.

I have become more of a realist about the motives of big pharma (old classmates work for several of these firms and they have explained the dirty secrets of these companies spewing evangelical-like hope at the cost for thier meds).

It is amazing how much better and functional I feel not being dragged down the pharma road any more. One caveat is that some people, albiet few, are being helped by some of these meds. So they should be happy, and I wish them the best.

I have replaced personally my goal of owning/flying a P-51 with fishing on a quiet river, bird watching and cooking. And, I feel so much better about it.:)

Big pharma may have soaked my pocketbook/savings dry, but they have done me a great service, and that is to appreciate what I can do and what life has to offer if you just look around.

No complaints from me anymore. Just the satisfaction of enjoying life at the fullest.

Thanks for the post, RW. I hope things are going well for you.

-Vic

Quote:

Originally Posted by Riverwild (Post 762913)

I am not sure how I missed this and my apologies if it has already been posted...

It just stunned me and then it made me angry, as a patient who is hostage to big pharma companies because I have a chronic incurable disease and choose to take a DMD to improve my quality of life.

The rising cost of MS drugs:

All costs listed are for drug only and are approximate cost per year. You or your insurance company may pay more or less depending on what kind of coverage you have.
Copaxone $42,300.00
Gilenya $48,000.00
Tysabri $42,788.00
Avonex $37,544.00
Betaseron $37,294.00
Rebif $36,825.00
Ampyra $12,850.00

http://www.bloomberg.com/news/2011-0...-ms-drugs.html

4-AP- Skip's pharmacy cost w/compounding $95.00 for 100 day supply/3 10mg caps a day (cost as of 02/11)
Low Dose Naltrexone- Skip's pharmacy cost w/compounding $66.00 for 100 day supply/4.5 mg day (cost as of 02/11)

I'm off on another letter writing campaign to my Congressmen and women and my Senators and the President and the papers and whoever else I can bother this week! :mad:

Thank you for your post Vic and I am happy that you and your MS have come to an understanding.:) Same here!!

Good Wishes:hug:

Hooray Victor! I have missed hearing from you. :hug: I was amazed at just how bad I felt while on that stuff, and they kept forcing it on us, even when we begged to quit. Suffering with increased LFTs, gastroparesis, PAncreatitis, and horrible skin issues, let alone the mental and emotional stress, they said "just keep shooting." UGH! I quit when I reached the ENOUGH! phase and didnt care if it meant divorcing my spouse or MD. I just couldnt take it anymore.

We need better options. :(

Vic - It's great to see you post again! We miss you around here!:hug:

RW - It's crazy!!!! Copaxone has gone up so much it is unreal! $3,000 +/- a month is just ridiculous. When I 1st started it was 1/2 that amount. I have started looking at alternatives to the CRABs and will be bringing it up with my neuro at my next appointment - LDN is on my list. It's all a crap shoot as to whether the meds are working for one or not. And, I often think, if I didn't take C would I still be where I am today? It's very possible.

wow...just wow! I had NO IDEA about the cost of MS meds... when I first went on betaseron I had a co pay with blue cross blue shield, but it was not overly high. I think, but not sure, at that time beta was around 1200$ a month (in 2000) of which I paid a small co-pay. In 2004 after Roy and I married, I switched to Tri-care and the 3 month supply from xpress-scripts costs me $9 so I have not had a clue about what the charges were for the drug since I first went on it. OMG it's almost tripled in price! Why isn't it coming DOWN with more people on it?

I don't get it, I just don't get it and I would love, love, love to let it go but how can I when I've not had one diagnosed "relapse" since the original flare in 7/2000?

I'm certainly on board with those of you going bareback and not looking back. I know for Dej the cure was as bad or worse than the disease itself.
:grouphug:

Quote:

Originally Posted by Victor H (Post 763137)

It is amazing how much better and functional I feel not being dragged down the pharma road any more.

I have replaced personally my goal of owning/flying a P-51 with fishing on a quiet river, bird watching and cooking. And, I feel so much better about it.:)

Big pharma may have soaked my pocketbook/savings dry, but they have done me a great service, and that is to appreciate what I can do and what life has to offer if you just look around.

No complaints from me anymore. Just the satisfaction of enjoying life at the fullest.

Amen, Vic. I don't see how some of those in the Big Pharma industry can sleep at night. :mad: Feeding us scare tactics to keep us taking their concoctions because "you never know if it's helping". I wonder if they'd tell their Mother the same thing if it were her with this disease?

I've gotten more results and help from LDN.....which is by far the most inexpensive of the meds listed.....yet it is the med the Neuro's poo-poo the most. Wonder why? :rolleyes:

P.S. It's good to see you back here. How's Tania?