Wednesday, January 7, 2009

In the Pipeline

There are many new drug therapies for Multiple Sclerosis in clinical trials. I read up on them when they have come across my Google Reader. I've given up on the ones that are already approved. They either didn't work for me or I found that my quality of life from the side effects was too much to trade for a promise of slowing my disease's progression.

I did begin two months ago on 4-AP. It appealed to me as it promises not to cure or slow disease progression, it works to help damaged nerves conduct better. It also is not in the hands of Big Pharma...yet. You have to get a compounding pharmacist to make it for you. I had to do some research. Lisa at Brass and Ivory helped quite a bit. Thanks Lisa.

Well, I have enough evidence of nerve damage. Walking has been my major challenge. I could walk with a cane on good days, and a walker/dog stroller (another story) on particularly (or peculiar) bad days. Walking was my major cause of exhaustion. Just how much does a human adult leg weigh anyway? It felt like I was dragging around one hundred pounds!

I have to admit I was skeptical that the 4-AP would do anything. I felt almost immediate results that I still was slow to give the drug credit for. I thought that maybe it was the cooler weather. The Florida temps dropped to a frigid 50 degrees a few nights. (sorry Seattle) Or I thought that maybe I just hit one of those elusive remittance periods that I have heard so much about in RRMS. But now over 2 months into it, I'm becoming convinced that it works. Even neighbors have commented on how well I have been walking. I still carry my cane, but rarely need it.

I read this in the MS Foundation newsletter today. Apparently Acorda Therapeutics has been doing trials on 4-AP that they have made in a slow release patentable formula.

Read the rest of the article and see what else is in the works. It gives me hope.

In the December 2008 National MS News :

• Walking speed improved significantly in a clinical trial of 240 people with all types of MS taking Fampridine-SR (MS-F204, Acorda Therapeutics, Inc.) compared with those taking inactive placebo. Fampridine-SR is a sustained-release formula of 4-aminopyridine, which temporarily enhances nerve signaling. The company is planning to file in 2009 for approval of this drug to treat mobility issues in MS.



Hey Bubbie, You're very welcome. I'm glad to be able to help with the spreading of information. :)

Unfortunately, though, here's some further information regarding 4-AP/Fampridine-SR. Acorda purchased the rights to it from Elan many years ago and has been conducting the trials since.

The estimated cost is close to $10,000. The have publicly stated a range of $5K-$10K, but from talking directly to the CEO, I would be absolutely surprised if it's not closer to 10K.

This may not seem like a big deal, but I'd like to remind anybody who stops by and reads this that my insurance policy still will only cover $1500 for my medications each year.

Bubbie said...

OMG! That's insane. It costs me $79.99 a month from the compounding pharmacy and my insurance pays me back all but $25.00. It's not slow release...I need to take two smaller doses per day. Why would I want to pay more for a patented formula? I wonder if it will still be available?


Unfortunately, I believe that once Fampridine-SR is approved that 4-AP will no longer be on the list of drugs which are allowed to be compounded. I could be wrong, but that's my understanding. :(

Bubbie said...

This would make the Bubbie VERY VERY angry! What's wrong with this system??


I'm all for whatever works...I'm even for whatever I THINK might work, even if there's no proof it does.

I'm glad you are walking again with a bit of a kick in your stride!

Linda D. in Seattle

Denver Refashionista said...

I am ahppy for you that you are finding some hope in your newest therapy.

Alan Winston said...

This was great information Bubbie. PLease tap me on the head at our next meeting so I can figure out who you are. This blof is great we are learning all about some wonderful people who sit next to us once a month and we no nothing about.

Bubbie said...

HI Allen. I'm guessing you are with my local "Friends of Hope" group. I get the emails from Deanna and just found the new blog today. I have to be honest...I volunteered once to man a booth for them last year, but I have never attended a meeting. I have been blogging here for nearly two years and have "met" a great group of MS bloggers. Check out the links...loads of information and some fun and personal experiences too.

Merelyme said...

Hey Bubbie...just stopping by to say hello.