TOO MANY SIDE EFFECTS!!

[Leeaura]

Has anyone else stopped TY because they had too many of the common/uncommon known side effects?

I have just realized that the sudden, huge amount of MS symptoms I've been dealing with for the last eight months may possibly be drug-related side effects instead.

I've had 15 infusions so far but, because I had only a few minor MS symptoms before TY, am considering whether it's in my best interest to continue.

I'd appreciate others thoughts.....

[jreagan70]

Everyone has to make the trade-off in deciding whether they would rather have more quality of life for a shorter time now, or more quantity of life even if the quality is reduced.

Millions and millions of people with all kinds of diseases -- lupus, rheumatoid arthritis, scleroderma, chronic heart failure, cancer -- have been making that trade-offs for generations. MS fairly new to this game.

Some people are able to maintain the joys of family and find that it counteracts the miseries of their their disease for many years. Others decide that if they're going to be miserable and lose quality of life, they'd rather that it comes directly from their disease itself rather than the treatment for it.

I think my experience has been somewhat similar to yours, Leeaura. I've stopped several medications (Ty isn't one of them) because the side effects and their consequences were worse than what MS is doing to me. Even though I don't like it and I don't want it, MS is part of my life experience. Having seen both sides of the equation, I would rather let nature take its course than to be the inadvertent cause of making my own experience worse.

Other people have different lives and different trade-offs, so their choices can be different, but all are equally valid.

[Leeaura]

jreagan,

You, very eloquently, put my thoughts into words. Thank u so much for that.

I have previously discontinued two DMDs due to side effect issues. Ty would be my third. Right
now, I'm leaning toward discontinuing all DMDs for awhile but still haven't made a definite decision.

Whatever is a girl to do?

[pennstater]

It is a tough question. Tysabri has been OK for me, and when I have to miss an infusion, I feel it and now have definitive proof, that my cognitive abilies decline.

But pre-Ty, I didn't realize how bad my DMD was making me feel. I blamed symptoms on MS, only to have them remit when I stopped the injections. I think of the years that I felt horrible and all the things I missed and cancelled on that I can't get back.

Is your neuro someone you can really talk to? Depending on age, length of diagnosis, and other factors, it could be that your neuro may be comfortable that you are lower risk and going DMD free.

There are no guarantees either way, and our own quality of life needs are so different.

Let us know what you decide.

[tortis]

Tysabri side effects

Hi, I had to go off tysabri, if you just go to the 2nd. page of this sub forum. You will find my whole journey with Ty. The post is titled New Maybe and the 3rd page has where I had to quit Ty. but it goes through all the side effects I had from the beginning. I really wish it had worked because right now they have nothing for me. Everyone is different I react badly to many drugs hopefully you will have better luck.
Peace Tortis

[shel67]

I've had 8 infusions so far and I either am having side effects that makes me feel I am relapsing or it's hormonal fluctuations worsening my MS symptoms.

Right before I started Ty I felt improved from a series of flares I had and 3 days after the first infusion I felt really bad. Every month since has been a roller coaster. If this isn't Ty then I literally have no side effects.

The MRI I did have showed no new lesions and the ones that I have were slightly improved. I'm getting new ones done in a few weeks.

So if it's not disease activity then it's either Ty or hormones because when ever I menstruate I feel improved. When I ovulate, I feel I'm relapsing. Last month was the first time I ever missed period and that month didn't have the up and downs. So I leaning towards hormones. I'm going to try different hormonal treatments to see.

If it is Ty than I can't deal with this. All this craziness didn't happen until I started it. I didn't have the up and downs. But then again for the last 5 years with all hormonal changes I had flares or I ended a flare.