Aa
Tysabri
Well went to the Dr today and my last mri shows new lesions so my dr is thinking of putting me on Tysabri. Is anyone else on this and how has it worked for you??
Went to the Dr yesterday and I tested negative for jcv, they have started all the paper work and insurance stuff to get me started on Tysabri,wonder how long that is going to take..with my insurance probable the 30 days they give them. thank you for all the advice everyone.
well... I am on tysabri, tested pos for JC virus and have a FABULOUS doctor ...actually two who are in agreemment to treat me with tysabri.(soory gg:)
I am watched extremely clos ee.
I will only be alllow up too 18 months then we will have to rethinnnnk any treatment ii may benefit on.
amo
I am watched extremely clos ee.
I will only be alllow up too 18 months then we will have to rethinnnnk any treatment ii may benefit on.
amo
If you test positive for the JC virus, no neuro in their right mind would put you on Tysabri! Totally contraindicated!
Hey, Tammy,
Sorry I came in late on this thread...I took Tysabri for a year, and had absolutely no flairs while I was on it (Woo Hoo!) I have progressed a little.
I'm currently on a brief "holiday", and taking Betaseron. In August, I will get my JC virus status, and if it's negative, I would go back on Tysabri in a heartbeat.
The only major side effect I had was skin lesions (looked like small, dime sized patches of poison oak). These did leave scars. My skin also became excessively dry, but a good lotion with glycerin in it is helpful. And this is just me. You might not get any of this. everybody is different.
PM me if you have any questions. Good Luck!!
Sorry I came in late on this thread...I took Tysabri for a year, and had absolutely no flairs while I was on it (Woo Hoo!) I have progressed a little.
I'm currently on a brief "holiday", and taking Betaseron. In August, I will get my JC virus status, and if it's negative, I would go back on Tysabri in a heartbeat.
The only major side effect I had was skin lesions (looked like small, dime sized patches of poison oak). These did leave scars. My skin also became excessively dry, but a good lotion with glycerin in it is helpful. And this is just me. You might not get any of this. everybody is different.
PM me if you have any questions. Good Luck!!
thank you for hooking me up with some people. cosmobirdy and i have sent quite a few messages back and forth and she has been a hugh help,even when i was venting a little. i know that every medicine has a warning but i can honestly say i have never seen death in them and it freaked me out,heck im sure it did everyone else. I will drop guitargrrrl a line and see what she has to say about it, i could get a million fews on it and i would be ok with that. thank you so much everyone.
I think every drug has warnings. The PML warnings are just a bit more ominous.
The others here that I can think of off the top of my head who have been on tysabri for a while are
cosmobirdy (rita) and guitargrrrl. Drop them both a note and they will be happy to talk to you about their experiences.
good luck,
Lulu
The others here that I can think of off the top of my head who have been on tysabri for a while are
cosmobirdy (rita) and guitargrrrl. Drop them both a note and they will be happy to talk to you about their experiences.
good luck,
Lulu
I had my 1st infusion 2 weeks ago, so at this point I have no clue if it is helping or not. The nurse said it could take 2 infusions before I "might" notice any difference.
I was/ am still scared about PML. I tested negative for the JC virus, and was reassured my chances for PML are almost nil. I have met quite a few people on Tysabri, and have heard nothing but good things about it. People seem to do really well and feel good while taking it.
Good luck to you and your decisions. For me it wasn't an easy decision. Get lots of information. I had a good friend who is a NP look over the inset given, and she said it seemed fairyl safe to her. She also told me to "ignore" the whole side effect booklet that are given.
She basically said Lawyers make that to cover their behind. She also told me aspirin gives similar warnings. (not the PML of course, but serious complications with it.)
Michelle
I was/ am still scared about PML. I tested negative for the JC virus, and was reassured my chances for PML are almost nil. I have met quite a few people on Tysabri, and have heard nothing but good things about it. People seem to do really well and feel good while taking it.
Good luck to you and your decisions. For me it wasn't an easy decision. Get lots of information. I had a good friend who is a NP look over the inset given, and she said it seemed fairyl safe to her. She also told me to "ignore" the whole side effect booklet that are given.
She basically said Lawyers make that to cover their behind. She also told me aspirin gives similar warnings. (not the PML of course, but serious complications with it.)
Michelle
i was dx in feb of 2010 and it has been down hill since then,heck this time last year i was in a wedding and once august hit is when it went down hill. i have been on extavia and now copaxone. they drew the blood to test for the jc antibody. im not sure how many exaserbations but i wanna say in august there were 4 and i had an mri on the 18th of april and i have a new one but he said its not active,i dont know what the means...your right i never in my wildest dreams thought i would have to make this decision but my mil had a kidney transplant and she told me that if it was going to help her she didnt have to think about it. i hope more people comment on this cause the more info and input i have the better i will feel.
hi,
things i would ask, how long have youuu been dx'd
how many exaserbations have you had.
I tested positive for the jc antibody and am given 18mos or so on tysabri...i have had seven so far. as of now i do not know if iit iss helping. I think i will have a comparing mri in the summer sometime.
I am much older than you, and tried copaxone, avonex,and betaserone before being offered tysabri.
UNfortuantly none of the meds are 100% and new lesions can happen on any of them.
There are a handful of others here on tysabri. I hope they se this to have input for you.
These decisions are not what we ever thought we would be up against.
take care, am o
things i would ask, how long have youuu been dx'd
how many exaserbations have you had.
I tested positive for the jc antibody and am given 18mos or so on tysabri...i have had seven so far. as of now i do not know if iit iss helping. I think i will have a comparing mri in the summer sometime.
I am much older than you, and tried copaxone, avonex,and betaserone before being offered tysabri.
UNfortuantly none of the meds are 100% and new lesions can happen on any of them.
There are a handful of others here on tysabri. I hope they se this to have input for you.
These decisions are not what we ever thought we would be up against.
take care, am o
Thank you and I hope they do but I havent gotten any comments but yours.... I have only havent had this posted that long so I hope they start coming in.
I had forgotten what extavia is, but I checked and it's a generic form of one of the interferons. So you've tried that and copaxone.
The only reason doctors do these switches is if they feel the drug you're on is not being effective. I guess that's what's happening to you, if your symptoms are worse and your lesion load is increasing.
We have quite a few members here on tysabri. I'm not one, but maybe others will comment.
Good luck to you.
ess
The only reason doctors do these switches is if they feel the drug you're on is not being effective. I guess that's what's happening to you, if your symptoms are worse and your lesion load is increasing.
We have quite a few members here on tysabri. I'm not one, but maybe others will comment.
Good luck to you.
ess
Hello, I was in extavia which i was out in by my old neuro and now i am on copaxone. plus i am on baclofen which the dr is slowly taking me off and i will be starting trileptal cause my legs twitch alot when i relax. oh i was on the extavia for 4 months and i only got worse and i am on copaxone for just over 6 months nw. i have read up on tysabri and i dont like when i have read,they drew blood today to check for the jc virus.
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