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  • shorty32982
    I am a mom of 2 young boys.  I go to the doctor next week and know that my MRI will be in 2 weeks since I am up for my yearly.  If my results come back worse, which we are pretty sure they will, Tysabri is what I will start.  I am scared of this medication.  I have been on betasseron since November 2010 after the birth of my son.  I am a stay at home mom now since things have gotten worse.  I found out I had ms when I was 2 weeks along with my son.   So many of treatments have had to be changed due to being pregnat then a breast feeding mother.

    How has this medication effected other people?  Is this a good choice?
  • MS Navigator Jess
    Hi there!  I'm going to move this question over to the "Treating MS" discussion section, it looks like you're looking for some personal experience/advice.  Let me know if you'd like general informaiton about Tysabri!
  • AmandaE
    I am a mom of 2 young boys.  I go to the doctor next week and know that my MRI will be in 2 weeks since I am up for my yearly.  If my results come back worse, which we are pretty sure they will, Tysabri is what I will start.  I am scared of this medication.  I have been on betasseron since November 2010 after the birth of my son.  I am a stay at home mom now since things have gotten worse.  I found out I had ms when I was 2 weeks along with my son.   So many of treatments have had to be changed due to being pregnat then a breast feeding mother.

    How has this medication effected other people?  Is this a good choice?
    I completely understand your fear of Tysabri. I was scared too. They can do a blood test before you even start to check and see if you have the JC virus antibody which is what would make you more susceptible to PML (the brain infection). When my blood work came back negative for it, it was a MUCH easier decision for me to make the switch to Tysabri. Hopefully it can do the same for you!

    I have had no more disease progression and a decrease in both quantity and size of lesions in my brain. In the near future I will get to find out via MRI what it has done for the lesions in my brain stem and spinal cord.

    Hands down I think Tysabri is a GREAT choice. It has greatly improved my quality of life.
  • AmandaE
    Hi! I completely understand where you're coming from as far as being scared of Tysabri. I was terrified of it. But I also didn't really have a choice because the other treatments available weren't helping me any more. So I took the leap of faith last January and have now had 16 treatments.

    Simply put, it changed my life. I am free to be me again and live a 'normal' life and do all the things I love to do. The only side effect I experience is feeling tired/no energy that night and the next day. And the beautiful thing is that it has had a great impact on the MS itself. Fewer lesions in my brain and shrinkage of others. I was amazed...and that was only after being on the treatment for 3 months! I have my next MRI coming up soon so I can't wait to see what effect Tysabri has made since then!
  • lui81089
    That is great to hear. my doctor is telling me about this medication because he injectasbles are not strong enough. I am still waiting for my JC test to come back. I am very afraid of this medication because of risks that are listed on for taking the medication. How do you know that you have shrinkage and fewer lesions? did you have another MRI? or is it just the symptoms eased up?
  • Victoria_Z_
    I am a mom of 2 young boys.  I go to the doctor next week and know that my MRI will be in 2 weeks since I am up for my yearly.  If my results come back worse, which we are pretty sure they will, Tysabri is what I will start.  I am scared of this medication.  I have been on betasseron since November 2010 after the birth of my son.  I am a stay at home mom now since things have gotten worse.  I found out I had ms when I was 2 weeks along with my son.   So many of treatments have had to be changed due to being pregnat then a breast feeding mother.

    How has this medication effected other people?  Is this a good choice?

    Hi, Y'all!  I am new to MS Connections but love to discuss this topic!

    Skipping all background info (please feel free to ask though), I started taking Tysabri on November 16, 2006.  YEP...I have been on this drug for over 5 years now.  I could no longer tolerate Avonex, and my Neuro thought I was the perfect candidate for this drug.  I will be honest, I rode the very same roller coaster many of y'all are on right now, but it would take major advancements or finally a cure for me to stop taking these infusions now!  I did test negative for the JC Virus...longest 3 weeks of my life waiting for those results!  The only true side effects that I have are headaches a couple days before and after the actual I.V. and fatigue the day of and the day after the infusion.  Since being on Tysabri, my MRI's have been STABLE!!!

    FYI - I am a mommy of 2 very active little guys.  I don't know how I would be keeping up with them if I did not take Tysabri!!!  Oh, and I have THE MOST AMAZING NURSE!!!

  • shorty32982
    I did test postive.  My Doc said I could be on it for 2 years then I will have to get off to regain atnibodies.  He really thinks this is the best for me.  He has been talkin g about this for over a year and I keep trying to get a different shot, and he really wants to try tysabri. 
  • Michraf
    Hi! I have been on Tysabri since Sept. LOVE IT. I get no side effects and have more energy. I was on Avonex for 8 years and really had no problems with it until last summer.

    They now have a blood test to see if you are positive or negative for PML. If you are negative there is apparently no threat. If you are positive, I think you can still take it but it is more of a risk for developing PML.
  • soshime


    They now have a blood test to see if you are positive or negative for PML.

    You mean JCV, not PML.
    Tysabri can possibly cause PML. Your risk is higher if you are positive for the JC virus.
  • joynerthedad
    Here is what I know so far...the risk of developing PML is SMALL the first year.  It is also SMALL in people who test negative for the JC virus.  I have always had an issue with SMALL and looking at my daughters at the breakfast table.  SMALL all of sudden becomes very BIG.  I can tell you a story, when my youngest was very little she had 'lazy eye' and needed surgery.  Now she was too young to understand, and I did my best to explain it to her.  When she came to, she started crying and naturally you want to rub your eyes...well, she couldn't, she just had surgery on her eye.  So, even though she could not see me...I asked her if she could hear my voice...she said yes...I told her it would be OK, she just could not touch her eyes right now...she said OK daddy.

    Now you tell me how BIG a small chance of developing PML is...
    ...because that weighs on my mind greatly.

    If you can provide me with more numbers...please do...

    ...and thank you.

    I mean no harm in expressing how I feel about it...
    ...I am actually looking at it...
    ...but it frightens me...
  • joynerthedad
    I am a mom of 2 young boys.  I go to the doctor next week and know that my MRI will be in 2 weeks since I am up for my yearly.  If my results come back worse, which we are pretty sure they will, Tysabri is what I will start.  I am scared of this medication.  I have been on betasseron since November 2010 after the birth of my son.  I am a stay at home mom now since things have gotten worse.  I found out I had ms when I was 2 weeks along with my son.   So many of treatments have had to be changed due to being pregnat then a breast feeding mother.

    How has this medication effected other people?  Is this a good choice?
    I am scared of it myself.  I am a single father with two daughters.  I tested negative, but fear has kept me from trying it.  Last MRI showed new activity.  I am due another in a couple of months.  Your question will help me tremendously.  Thank you.
  • shorty32982
    I did the blood test and was postive so I can only be it on for a year.   I don't know many people that have been on this medication so I just a little scared because it seems risky.
  • Michraf
    Some people I have talked to at the infusion center I go to have tested positive. They were told the risk of developing PML were low, but i can certainly see it being scary. If there was a  serious risk, your dr. probably would not put you on it.
  • cgermans
    Hi Amanda!

    Glad to hear that Tysabri is working so well for you. Did your neurologist present you with other options? I am in the process of deciding between Rebif, Tysabri or clinical trial and this is a tough decision! If you were presented with options, how did you narrow down your selection?

    Hope your well.

    Christie
  • soshime
    Hi there, Tysabri changed my life. MS had made a train wreck of it, to the point where I could barely count on my own body to get me though the day. Now i'm pretty much back to "normal" -excluding my extreme fatigue. I've been on tysabri now for 55 doses. That's almost 5 years now. I'm positive for the JC virus and have a past history of use of immunosuppressants, and still I'm on tysabri. I'm only on it until BG-12 comes out, because of my high risk factor for PML. But I know that without it, I wouldn't have been able to work part-time for the past few years, or possibly travel as much as I have or done as much as I have. It's not set me back at all, nor had any ill side effects (knock on wood!). For some reason, tysabri and my body get along great. And I'm lucky/happy for that.
  • soshime
    Oh, and my MRIs are coming back clean, whereas they used to be riddled with lesions. Including my C-spine. I'd recommend anyone to try it, if they're at that point where other drugs are failing them. Everything else was failing me (I even tried Gilenya, and went back to tysabri) so I pretty much had no choice. But I don't mind it. I kinda like it and am happy it exists. Or else I'd be in a world of hurt right now.
  • AmandaE
    Hi Amanda!

    Glad to hear that Tysabri is working so well for you. Did your neurologist present you with other options? I am in the process of deciding between Rebif, Tysabri or clinical trial and this is a tough decision! If you were presented with options, how did you narrow down your selection?

    Hope your well.

    Christie
    Hi Christie - I narrowed down my options by avoiding Tysabri at all costs. :S First I tried to get in on a clinical trial for BG-12 (which just this past week has been submitted to the FDA for approval), but didn't make it because my bloodwork wasn't perfect. Then I tried a second clinical trial, but didn't make it into that one either. So I 'chose' Tysabri. Had I known that I would test negative for the JC virus antibody and have such great results from the Tysabri, I would NOT have hesitated the way I did! I wish you the best as you make your decision. It's not something to be taken lightly, that's for sure.
  • AmandaE
    I am scared of it myself.  I am a single father with two daughters.  I tested negative, but fear has kept me from trying it.  Last MRI showed new activity.  I am due another in a couple of months.  Your question will help me tremendously.  Thank you.
    May I ask what you are specifically afraid of at this point? You have a great first step with having a negative result for the JC virus. After only being on Tysabri for 3 months, I had a decrease in the quantity and the size of lesions in my brain. I was amazed! Plus, I felt better physically!
  • joynerthedad
    May I ask what you are specifically afraid of at this point? You have a great first step with having a negative result for the JC virus. After only being on Tysabri for 3 months, I had a decrease in the quantity and the size of lesions in my brain. I was amazed! Plus, I felt better physically!
    Being a single father, I think about how my decisions affect my daugters.  The risk of PML is huge to me....though it appears my options may becoming limited as the activity of the MS is increasing.  Timing is everything.  My girls are older, but not quite there yet.

    Make sense now?

    I REALLY appreicate your input and hope it continues.
  • Sun2Shine2008
    Hi, I am also afraid of Tysabri.  I have always said that I wouldn't ever do Tysabri, but, now I am
    facing the big decision.  I had a relapse in February and in March.  I asked my doctors office if they could ask my neuro a question for me.  I wanted to know, since having a relapse two months in a row, if he thought I should have a MRI done to see if things are looking worse.  Well, I was told that since I wouldn't consider Tysabri that he didn't feel a MRI was needed.  He
    said that since I am not willing to do Tysabri, that if my MRI showed that things were getting worse that there wasn't anything he would do.  I kind of felt like being brushed off the table like a
    crumb.  I asked to be tested for the JC Virus and am waiting for the results.  I am scared.  When I was a sophmore in high school, I ended up with Hepatitus A.  My family and I would travel by car to Arizona for Christmas.  I went out to eat, went shopping, etc just like everyone else did.  A month later, I was sick.  Later my Grandma told us there was an epidemic of Hepatitus A in Yuma.  I am thankful that no one else in my family or friends got the Hepatitus A.  I am scared.  I have gotten the flu and my family hasn't even though I did the shot and they didn't.  Has been the story of my life.  Seems like if there is only a 4% chance of a patient having a reaction to a drug, I am in the 4%.  I told my doctor that it scares me because I feel like I will be that 1 in 1000 that will get the PML.  I really don't know what to do.  Sorry for such a long post.  I am going to do what the neuro says, but, am so scared.