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Friday, September 6, 2013

Please advise

Fellow MSers, I really need some good advice right now from some people like myself who understand... I went to get my Copaxone today on my health plan from my new school district. When I went to the counter to pick it up the woman told me it would be $250.00. I thought I had heard her wrong but I had not. I decided not to buy my Copaxone today so I could go home to troubleshoot. I signed up for the same Kaiser plan I had in my old district where I only had to pay $10.00 copay each time. Apparently even the same plan is not the same in each district and does not cover the same stuff. I came home thinking maybe I signed up for the wrong plan but then I checked and I had signed up for the best one offered so even if I changed my Kaiser plan, my med will still cost me $250.00 a month. The problem is, at the moment I just don't have the money. So here is where I need help... Do I just toss the dice and quit the med? I have no way of even knowing if it helps me. It does not treat symptoms and it does not cure MS. I am feeling fine and I have not had a relapse in over a year (knock on wood). A huge part of me wants to take 6 months off and see what happens. Please send advise but please be kind and don't call me an idiot or anything (sometimes I notice folks can be militant about meds so please have compassion). Thanks so much, Denver Refashionista


Anonymous said...

Hello. I was on beta sermon for 2 years and started getting a reaction to it so I quit taking it. My neuro said that was fine. During those 2 years I still had relapses. I have been off all medication for 8 years and now have secondary progressive ms as opposed to r&r, which I was diagnosed with in 2002. Whether I transitioned to secondary progressive because of going off meds I will never know. My new neuro here doesn't think so. I live in Canada and the government paid for my medication. I don't know who makes Capoxone, but they should have a program to help you with the cost. My email is if you have any questions. My thoughts are with you

mjalbonetti said...

They have a program you can sign up for through Copaxone for assistance and you won't have to pay a dime. Even if you have insurance.

Tracey's Life said...

call the drug company and tell them your situation. they may have a program to help you

Unknown said...

Hi Denver,
I'm not sure about the Copaxone, but when I started with my Avonex, the pharmaceutical company that makes it let me know that if I ever had trouble paying for meds I should let them know. They have a program in place to help financially. You might want to call the drug manufacturer to see if they have a similar program.

Good luck. Let us know how it works out.

Judy said...

You might be interested in this article which appeared in what I think is the best compiler and analysis of global MS research:

My own experience is not entirely relevant to yours since I have had MS for many more years than you. I am currently on no DMDs though have used Avonex and Tysabri in the past. There are risks for going off meds. Also, I had the mildest form of the disease for decades only to find out it was still operating underneath the surface. Then in my 50s, the accumulated unseen damage came to the fore. Everything I have seen suggests that the DMDs are particularly useful, if at all, for those who are in the earlier stages of the disease. If you explore the site I told you about above, you will probably find an article which discusses this. Good luck!

Joan said...

Hi Nadja, Give Shared Solutions a call at 1-800-877-8100. You might be eligible for their co-pay assistance program. -Joan

Anonymous said...

I only know my own experience. I've been on copaxone since 2000 - 13 years. The cost induces guilt in me. A couple of months ago my neuro and I agreed that since I continue to slowly progress, it likely wasn't helping me at all. We agreed I would stop taking it. I stopped and 10 days later, my vision started getting wacky (other than Uthoff's I haven't had vision problems since my first symptom in 1986). I started injections again and my vision cleared up. Maybe coincidence, but I don't think so. I won't stop again without replacing it with something else.

Unknown said...

I can't believe no ones left a comment! First of all whatever decision you make is the right one! No militant thoughts here!
My first thought is call shared solutions. I always hear about the plans for help, this is when it's supposed to work. These drugs are what I consider my faith drugs. Because whatever path you chose you just have to have faith it's working!
I am always amazed at how strong you are. I've been reding your blog for. Lot of years now, you've gone from actually writing about fashion to aerial yoga! ( is that the right term?)
Anyways back to drugs, no real great advice here just trust yourself. Continue reading. Didn't do anything for me, but look up the Wahls protocol. ( maybe didn't work as I never could do it all??!

Best of luck and keep us posted

Denver Refashionista said...

Thanks so much everyone. Your advice here and on fb has been great. I just left a message with Shared Solutions to see about financial assistance. I have decide to stay the course no matter what and stay on the Copaxone.

Unknown said...

Don't stop taking it if you want to continue in a few weeks or months. Copaxone takes six months to become fully effective. Stopping it will decrease the benefit. I was on it for five years. Four years were great as I only had shot spot reactions but good quality of life. The fifth year I was not faithful every day, got down to three times a week due to shot spot issues. My MS spiraled out of control and I had to change medication.