MS drug choices

[Amcit]

At present all my organs and organ systems are operating within normal parameters. Are there any MS drugs that don't destroy either my heart, brain, kidneys, liver, thyroid, or any other organs that I need for life? My vision is relatively normal, I have no pain of any kind, but I cannot walk. I use a wheel chair for mobility.What I would like is to be allowed to try stem cell therapy but we know that won't be allowed by the FDA or BIG PHARMA. I would also like to be a CCSVI  Guinea pig. Both of these treatments seem to work with no side effects. Whatever help the MedHelp family can give is appreciated.

[kazzwazz]

I was on betaferon 1 beta for about 18 years and as a result I now have liver failure if I had of known that this would of happened to me I would never of had the injections because now because I have ms I don't qualify for a liver transplant either so I guess I was given a death sentence by my neurologist when he prescribed the medication to me not happy at all wish I could sue someone as we don't even have enough money to bury me in the event of my death thankyou medical science for stuffing up my life

[kwarendorf]

I'm with Shell. If you want to pursue outside of the box therapies, by all means do. But there are those of us who do not necessarily see Big Pharma as the enemy.

There are very few treatments, including CCSVI and stem cell, that are without risk. I am ware of, and accept the risks associated with my use of Tysabri. I don't think that one of those risks is the destruction of my internal organs :-)

Kyle

[sllowe]

Hi there,

I have a friend who has had stem cell replacement, and he's doing super well. There is a Dr. in Chicago who performed it - Dr. Burt, go ahead and look him up and you will see that stem cell replacement is used for many things. One of our members here has had it for cancer, and she'll elaborate if she sees this post. The procedure is grueling and can be life threatening for some, unlike disease modifiers.  I believe it it for sure for those whose body can handle it.

As for the DMD "destroying" your organs. They absolutely do not. If they did, then they would not be approved by the FDA. And, the whole lot of us on them would not be here to respond to your post.

If you would like to pursue CCSVI or stem cell replacement, then I say go for it! But, please know that neither have are typical treatments for MS.

I'm sorry for your immobility, and I'm sorry you feel so much damage will be caused by a disease modifier. They really are proven to be our best source of protection for now.

Copaxone is no safer than the other injectibles. They are all "medicine" and, all medicine comes with risk.

Thank you for joining us and being honest with your feelings. I do hope to provide the other side of the coin, simply because this medication has worked for so many. Including me and those that I love.

See you around,
-Shell

[Khiba]

I had the CCSVI treatment and it did help for about 6 months, then I regressed back to normal. But for some folks it holds beautifully and they get way better.

I tried copaxone too but had allergic reaction to it, which is rare.

Since I had cancer, Avonex, Betaseron, and Rebif were out for me so my Neurologist put me on IVIG. I get an infusion once every 6 weeks now and am doing great. As my neurologist put it, a subset of MS patients, particularly those of us with Transverse Myelitis, do beautifully on IVIG. I am one of that subset. The side effects are few, a day or so with a headache and flu like symptoms, nothing that a Advil or 2 won't control, then my energy levels soar and I am good to go for another 6 weeks.

At first, I had IVIG every other week and have gradually extended it out to 6 weeks with the eventual goal being once a quarter. Its expensive like all the drugs, but my insurance pays for it.

IVIG is supposed to replace my immune system and train it not to eat me up. So far, knock on wood, it been almost 5 years since my last relapse.

As far a ruining your liver, kidneys, heart etc. IVIG seems very benign. I get blood drawn before each infusion and my numbers always come back normal. :)

[zoefromsussex]

Yep, copaxone does seem the safest. It was my drug of choice but I was unlucky as I reacted badly to the glatimer acetate (think that's the correct spelling1) I think that's quite rare though.
Just to point out though, the drugs don't ALWAYS damage your body. well, at least I hope they don't anyway as I'm about to start on rebif! lol

[HVAC]

Copaxone is the safest.

Alex