Going in for another infusion today. According to the MRI since starting Ty I not only continued to grow new lesions but now I have a few that are showing up as active. Been over a year since any of them have been active with the contrast. So I am destined to another 3 rounds of Ty before we do another set of pictures and if there isn't a huge change then she is puling me off of this and sending me in for clinical trials because I refuse chemo.

If this is the miracle drug, why do I feel like I am playing russian roullette every month?

Sorry your MRI is showing new and active lesions How have you been physically ? Wondering if Ty was ever the med for you
After the first couple months physically I did better, progression halted and my MRIs showed no new or active lesions. These are the reasons I have been such a Tysabri cheerleader.
Best wishes,
Linda

You know I hear about so many people doing great on this I was actually kind of excited when we started. but it's been 5 months now, and I have more sx now than I did when I started. But I do like the fact that I don't get the nasty flu like stuff with it. The only side effect I have really had from it is feeling completely drained of energy after the infusion. Which is normal, and easily remedied with a long nap.

Legzz,
I am so sorry you are having more problems.

Having your MRI show more active lesions may indicate that Tysabri isn't working for you or it may be that you are having one heck of a relapse. Everyone's different and no one drug works for everyone. If it did we would all still be on the first drug we chose, because that drug would have worked.

Copaxone didn't work for me and I remember how utterly frustrated I was, dealing with relapse after relapse, having a neuro who couldn't do any more for me than offer steroids or a drug change, advising me one month to stay on Copaxone and the next trying to get me to go to another drug and then saying give Copaxone more time, while waiting and fighting for Tysabri to come back.

Tysabri worked for me, but I know a lot of people who could not tolerate it, developed antibodies or did not respond. Some move to interferons or Copaxone, some go to other drugs that are on the market today, including Cellcept and other chemo drugs, some are off everything by choice or due to re-classification to SPMS or PPMS, some are trying alternatives like LDN, CCSVI, etc, and some are in trials for new drugs.

I know that someday Tysabri may stop working, or something else may happen and I may have to change course. Until then, I'm dealing with the hand I was dealt and make my choices after careful consideration of my options. I'm just grateful that I have had good results and a long relapse free time to breathe. All my symptoms are not gone. I treat them with more drugs. I was med free previous to my diagnosis and now I am a walking med cabinet, with supplements and drugs, and a tupperware cup and cover always with me to haul them around because they help me maintain my QOL.

I truly hope things get better for you whether you stay on Tysabri or choose another path. Don't lose hope. There are other drugs in trial right now showing efficacy and good responses. If you want more information look at the results being presented at the AAN conference this week. The information will be reported in the news for the next month or so following the conference, but there's usually something in the news every day this week.

Leggz, I'm so sorry that Ty doesn't appear to be working for you. There are so many new meds that will be available soon. Don't give up hope. I'm keeping my fingers crossed that you'll soon find the right one for you.

hugs,
Shayna

Legzz,

Have you tried Copaxone? It's working great for me. Also, I recall a treatment protocol where they use Novantrone for a period of time then follow up with Copaxone thereafter. I know a couple of people who were having similar problems as you and this seemed to work. Something about the chemo knocking down the aggressive disease activity then the Copaxone keeping it leveled afterward.

C was the first one I was on. She might try revisiting it after we stop the Ty. I didn't have any probs with the C, I stopped taking it for other reasons and when I did almost all of my sx went away within 10 days.

Novantrone soon after Tysabri could be a problem. Most neuros these days won't prescribe Novantrone after Tysabri until a long washout period has been completed due to the possible adverse reactions that could result. It's the combo thing.

I hate this #$%@^&* disease. I hate the whole thing. I hate that we have to make these decisions. I hate that we have to consider every detail of every drug and what they can do to us. I hate that we have to study things we never thought we would ever have to know about the science and makeup of drugs. I hate that we have to listen to a doc who may not study and keep up on the details like we have to, when what we choose may be a life changing decision! I hate the fact that there hasn't been enough money spent since this stupid disease was discovered to find out WHAT CAUSES IT! We can send people into space but we can't figure out what eats our own brains??? Aaargh!

(sorry, my rant...it just gets so frustrating!)

But I'm thankful that we can make our own researched decisions and have great forums like this to help.

The Space business is not as advanced as you might think (I happen to be a rocket scientist) - We get there but it takes an awful lot of money and our ability to get there reliably has advanced but is nowhere close to what we expect these days from the products we use everyday.

Ditto! I also hate that 6 out of my 7 current meds all cause drowsiness and the doc can't figure out why the anti fatigue med doesn't work!