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Old 04-14-2010, 10:23 PM
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Riverwild Riverwild is offline
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Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
Riverwild Riverwild is offline
Magnate
Riverwild's Avatar
 
Join Date: May 2007
Location: Heah!
Posts: 2,921
15 yr Member
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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.
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away?


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I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends!

diagnosed 09/03/2004
scheduled to start Tysabri 03/05
Tysabri withdrawn from market 02/28/05
Copaxone 05/05-12/06
Tysabri returned to market 06/05/06
Found a new neuro 04/07
Tysabri 05/25/07-present
Medical Marijuana legally 12/03/09
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Negative for JC virus antibodies!
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I'm doing alright and making good grades,
The future's so bright, I gotta wear shades!
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