Tysabri: Any opinions or experiences? please share!

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bella3
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/27/2008 8:42 PM (GMT -6)   
I was diagnosed with MS in 2000. My Doctor says my lesions are very active and would like to put me on Tysabri. Does anyone have any experiences good and/or bad? I have heard horror stories about it causing PML??, causing fatality. I am a wife and mother of 2 girls, and do not want to jeopartize my family with any problems such as me dying. Any advice? I only hear what my doctor tells me.
 
 

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3532
   Posted 7/28/2008 12:38 PM (GMT -6)   

Hey Bella,

I am on vacation but I checked in today and wanted to respond.  I read your other post as well.  First you have to remember, you don't have to do any therapy that you are uncomfortable with.  You can stay on the therapy you are currently using.  If that does  not seem to be working ( I know you said you have tried the other crabs) just stay on it anyway.  You are sounding very panicked and I feel badly about that.  That is a terrible way to feel.  Ask your doctor for perhaps one of the more experimental off label treatments like prozac.  See if he is willing to "buy" you some time with something else.  A new treatment may be just around the corner.  I want you to gain a sense of control here as far as the treatments go. 

Tysabri is a good drug.  It has very few side effects and it considered extremely effective.  It is not for everyone, some seem to be allergic to it.  The PMLs that you talk of are very rare. It is still scary and something to consider. 

Ok, about now you are realizing that I am not trying to help with the decision you have to make.  All I want you to know is that YOU have the choice.   It is NOT your doctor's choice.  He can make recommendations but you are in charge of what you put into your body.  I wish you the very best of luck and I hope you gain some peace from this.


Gretchen       co-moderator MS board       diagnosed with MS July 2006


MannyS
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/28/2008 3:40 PM (GMT -6)   

Hi

I am on tysabri for almost a year and I am doing great, my Dr. made a spinal test before I started, to make sure there is no virus that can cause PML, I did also an MRI for the same reason, after 6 months of tysabri he did again the tests, and this is what I can tell you my dr. told me this and I got it also from others, that if the results from the test is good you will not get PML, now regarding other side effects I don’t have noting maybe some people are deferent but I don’t have no side effects for the past 3/4 year.

Should you have the right mind to decide what to do.


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 7/28/2008 6:56 PM (GMT -6)   
Hi Bella,
I am on Tysabri since March of this year. I debate this decision for about 6 months before starting on it. I was on Rebif for 14 months (feel way better off that). I kept getting exacerbations. Every other month it seemed as tho i was getting worse. I was so frustrated.
I am a mother also. I have an 11 year old daughter and this was such a huge decision for me to make because i have her. If i didn't have her i dont think i would have thought twice about putting this in my body. I was so torn between "is this selfish of me to put myself at risk by taking this for a chance to possibly feel a little better" OR "Is it selfish not to give it a try for a chance to possibly be able to do a little bit more with my daughter and stay stable for once."  Back and forth, back and forth. I couldn't decide, until i got an awful flair up where i was so off balance i could barely walk is when i said "thats it". I was approved by my insurance in like 2 days and was getting my infusion the following week. No one can tell you what to do. You really have to make the decision on your own. I asked my family and friends their thoughts, but no one understands except another ms patient i think. I am doing so much better on tysabri. I do not have any side effects except a headache afterwards. They monitor you closely which makes me feel comfortable too. I now look forward to going for my infusion. I havent had a flair up since i started Tysabri.
I wish you all the luck with your decision. You will make the right one for you and your family. Feel free to email me if you have any questions.
Thoughts and Prayers,
Lynn
 
Dx MS December, 2006
Started Tysabri March, 2008
Baclofen/Zanaflex Combo,
Cymbalta and Provigil


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 7/28/2008 11:40 PM (GMT -6)   

Hi Bella

I too am on Tysabri and am overall very happy with it so far. 

I started it last November and unfortunately it can increase your risk of infections, which seems to be the case for me.  I've been on antibiotics a few times.  However, other patients I've talked to don't seem to be having this problem.

On the plus side, I feel WAY better since starting Tysabri.  I have more energy, I think more clearly, and I feel stronger and a little less numb too!  I just had my 6 month follow up MRI on Sunday, and find out in a couple weeks how my lesions are looking.  I've heard many stories of lesions shrinking and things stabilizing.  I hope that's true for me too, as I too was having many relapses.  I was on Betaseron for a year and a half and it just wasn't good enough.

The decision to start Tysabri for me was an easy one, as I have no kids and was heading down a road my neurologist and I didn't like - lots of relapses and incomplete recoveries from them.  The good news is, as far as I've heard, there have been no new cases of PML in the 2 years that Tysabri has been back on the market.

Good luck with your decision, if I can help please feel free to email me.

Shar


Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007

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