Tysabri

[maine222]

Does anyone have information on Tysabri?  I haven't been told much on it, although I have been told by 3 different doctors I should take a  look at it.  I would like to know what others on it experience or experienced while on it?

[Guitar_grrrl]

I've had 10 infusions of Tysabri.  I can say that I'm stable and have had no new flairs or progression on top of what I've had.  My MDs want me to take a 3 month vacation from it after my 12th infusion.  I'm going to take it after my 11th just to save myself $4000 in co-pay/MOOP.  I'm OK with this, as it lessens my chances of getting PML.

The infusions aren't painful (other than the IV start), and I've never had any kind of reaction.  For me, my energy crashes about a week before a coming infusion, and it takes 4 - 5 days after the infusion to regain my energy.  So I get 2+ weeks of feeling really pretty good.  It's not supposed to help symptoms, it's supposed to lessen the incidence of flairs and progression of disability.  But I must say, the boost of energy mid-cycle, for me, is a plus!

Good Luck!

[johnniebear]

I found  this the young lady on Youtube,   she has had MS since the age of 16,  she is 26 n and has posted her treatments online.

lauren is on Tysabri,   and she goes thru all of the emotions ,  you will see her in full flare & different hospital stays.  She give great Pep talks..

Here's the link,  
http://www.youtube.com/user/laurenvparrott#p/u/71/7X1Ns_T6v2o

it's became very emotional for me and my wife as we watched all of video's

John

[Lulu54]

alex is so right - the benefits/risk analysis is very important with all the drug decisions we make.

Tysabri is not offered casually by any neuro - almost always you need to have failed on other disease modifying therapy before tysabri is offered.

Yes, there is a risk of PML - a rare brain disease - but there are lots of other risks out there, too.  If my current therapy were not working I would not hesitate to try Tysabri.

Talk to your doctor about this and feel free to ask your questions here - we have several people who are on this IV therapy.

be well, Lulu

[HVAC]

The thing with all medications is you have Benefit and Risk and you have to weigh these things carefully for every individual patient. I know many people who swear by Tysabri and others not willing to take the risk. If the regular drugs will not work or you have a fast progressing case than you might take the risk. Others can get into the more technical aspects of Tysabri there probably is a health page devoted to it.

I do no my own Doctor never offers it lightly and he monitors the person on it as carefully as possible.

Alex

[Sumanadevii]

My neuro would like to see me on it.  She has many patients that are doing very well using it.  It is taken once a month.  She told me that 1 in 1000 patients get a rare brain infection (which is rather serious).  However, data is showing that the rate is lower for patients using the drug for under two years.  She feels that the benefits outweigh the risks.  She wants me to consider it because I was left untreated for years and now the MS is out of control.  She thinks going on Tysabri could calm things.

I have yet to make a decision.