Tuesday, November 16, 2010

Dare I get excited?

I saw my neurologist yesterday and it had been about a year. I went in with a list of complicated questions, but came out with ground breaking news.

There is a brand spankin' new oral med on the market that is not a remake of any of the available options! Drum roll..... finglimod. FDA approval as first oral M.S. treatment! From my understanding it is an immunosuppressant, which may be the con, but it works on an antibody basis which is the pro to this medication as I can see.The other pro being it is oral, all other forms of treatment are shots or infusions.

The easiest explaination I have read is it reduces overall numbers of leukocytes which cause the auto-immune reaction and attack the myelin sheath. For those who know little about M.S. this means the break down of the nerve coating that keeps all the happy little brain signals shooting will be reduced so symptoms and progression of the illness will slow.Early studies show that it is 3 or more times more effective than what is presently on the market.

To me this means an option that does not load me down with side effects (copaxone) or, cause me to feel like I have been run over by a truck (rebif). It also doesn't scare the crap out of me (tysabri) with that pesky little side effect of a rare brain disease that kills you by the time you catch it!

So, am I going to go on it immediately? No, my doctor feels that in the world of M.S. every new treatment begins as the OMG this is going to change my life and cure me! We are going to watch it for about 6 months see what happens and if the risk to benefit ratio is adequate, I may begin the treatment then. He has the same feeling about the new surgical interventon CCVSI.

This intervention is based on the idea that there is a toxic build up of iron and other things in the brain and the proceedure is angioplasty to open up major veins into brain or legs and let the body recirculate and get rid of all the iron. People are also giving blood for the same reason.I have seen videos and the before and after is simply awesome.

It again is a new proceedure and being touted as the "cure" we have all been waiting on. My doctor, again, being conservative feels the same way I do, lets wait and watch and see. It also being so new will probably not be covered by my insurance through Social Security, being disabled.

So, am I excited? Of course! Will I wait until it's been adequately used around the nation, yep! By May, I may be on the med myself as my doctor is expecting a huge attraction as it is not shot and there are those with serious needle aversions. So, let's wish the M.S. world luck and hope that this is truly an effective medication without terrible side effects!


Pandora Wilde said...

Your doctor sounds wise--you're fortunate that he'll wait and see what pops up as use becomes more widespread. It also sounds like you've been sent down every single path anyone hears "might" be "it" like I have.

Every time I see a new doctor we go thru the list of "Oh this worked for my patients and THAT worked and this other thing worked" but when I spoke of what works for me it's pooh-poohed and I am belittled--after all, I'm just a patient who usually has more experience on the other side of the bedside manner than the doctor I'm seeing, what I know means nothing (/end sarcasm).

It's really good to hear there may be new chances for you but also that your doctor is willing to see what happens to others outside the "we picked the most perfect patients to test on" FDA study group. Hugs and good luck.

jojo said...

Thanks Serra, yes he is wise and practical. I asked him about b vitamins he said sure, it' not going to hurt you. I asked him about giving blood to get rid of the excess toxins he said, never a problem. The ccvsi clinics are popping up every where, but he does know of one Doc who lost his license because of it. So, wait and see is not a bad deal.