Tysabri

[Pbargal]

I was diagnosed two years ago and have only been on Copaxone. My neurologist wants to put me on Tysabri because I had a legion this summer on my MRI. Has anyone been on this? What was your experience if you were?

[Royjr]

I've been Tysabri since 2008. At first I worried about PML but over time with excellent results I put it in GOD'S hand. It works for me, but I do know some who switched to one of the oral drugs because of this along with the inconvenience of getting infused every four weeks. With the oral drugs effecting the liver and it also can cause PML, Tysabri is the easiest and safest going. I'm JCV negative but even if you positive this doesn't mean you'll get PML, it just increase your chances.

What ever you decide, I wish you luck and keep us informed on how you doing.

[Pbargal in reply to Royjr]

I thought you could only stay on it for two years because of the risk of PML. Have you had any new legions since you've been on it?

[Royjr in reply to Pbargal]

I Think different Docs have their opinion on this subject. The two prominent neurologist in my area don't seem to think this way. There isn't a set number on how long you'll be on Tysabri. They monitor my brain every year for any signs of PML and new lesions. I haven't acquire any new lesions and haven't had any problems so far. I do exercise as much as I can and I do monitor my eating and diet.

I use to worry about me getting PML but not so much now. Everything that I've researched says it the best ABC drug out right now. I even know that one of the oral drugs have a label that warns of PML. So you just have to trust.

[Sarah_Ann]

I was on Tysabri for 2 doses. The my first infusion was great. This was the first medication I had been on for MS as I was diagnosed in May. The week after my first infusion, I felt great. It was the first time in a few months that my legs felt normal. It was a great experience. I even walked 7 miles on the Grand Canyon's rim. I definitely think it is worth a try. After being with my sister and hearing about all the side effects she had from her meds, it was really encouraging to take something had actually made me feel better right away. Unfortunately, I ended up being in the 1% of people who developed antibodies against it. I had my second infusion last week which resulted in a mild allergic reaction that involved itchy forearms and hives. Fortunately Benadryl cleared it up right away. I have been feeling sluggish all week and I didn't get any of the perks I had had after my first dosage. My twin sister was diagnosed 6 years ago and has tried almost all the other medications with out luck so I was really excited about Tysabri so I am pretty disappointed. I meet with my neurologist on Friday but I am pretty sure he will be switching me to something else.

[purpletustin in reply to Sarah_Ann]

I was on Copaxone for 7 years. Beginning of year 7 I realized I was not doing great. Eventually, taken off Copax and reluctantly tried Tysabri. I was and still are very negative when I even hear the name. My Bad! IMHO, when you have a negative attitude about something, your chances of success diminish. I had 4 infusions and no problems with any of them. During this time, I had major back surgery. Month 3 after the surgery, the bones deteriorated and all the bolts, nuts, screws came loose. Result, another major back surgery 2 months ago. Terrible recovery, very difficult. 2 neurologists reassured me the Tysabri was not responsible. But, with my rotten attitude (only about this), I insisted I get off it immediately. At the same time, my DX was changed to Secondary Progressive. Consequently, I'm not on any Disease Modifying Therapy. Rather, I'm in a state of limbo, but working with my new neurologist, will make some good decisions shortly.

Moral of my story, don't do what I did, don't let negative thoughts sabotage you.

Good luck.

BTW, I was told only could be on Tysabri 2 years and that it takes at least 5 infusions to see any results.

[Pbargal in reply to purpletustin]

Thank you for the great advice I plan to flollow it the best I can and pray your able to as well.

[Royjr in reply to Sarah_Ann]

I think it sounds like you experienced that dreaded mind telling you that this drug is working great. I'm not a doctor but I've seen this many times. someone takes a new medicine and swears instantly by it. Working in the medical field for over 20 years I've seen doctors give a patient sugar pills because they wanted a pill to get rid of the pain they have now. Soon as they take the pill they swear the pain is gone. I think that's why companies rely on these infomercial to sell some bogus products. Like I said I'm no doctor but they tell me not many drugs make you feel better instantly ( but that's different for IV drugs and some shots). I've been on Tysabri for 8 years and it helps me but I still have MS. The drug isn't a cure but it slows the progression of the disease and it effects. I do feel better but I had to wait after a few infusion before I could make that statement. This drug isn't for everyone but I do think for those who can take it, it works for them. Good luck and I hope whatever you take works for you.

[Sarah_Ann in reply to Royjr]

For me it wasn't that It was working great. It was more that I didn't have any side effects the first time. Every med that my sister had tried meant that she felt like crap for a few days afterward. Tysabri was the only one where I felt no additional side effects. But as I developed antibodies, I will be switching to Tecfidera. It is just going to be awful starting a new drug within a week or so starting a new job. I am glad Tysabri works for you!

[Pbargal]

Sorry to hear about what happened. Hope you find something that works for you Sarah_Ann.

[tweets335]

I am on tysabri now. So far it has been the best treatment.

[JeenaRae]

I've been on Tysabri since 2008-2009 I've lost count lol. I think I'm on my 105th dose. I was skeptical at first because of PML but with good white cell count tests and now the JCV virus test I leave it to god.

I haven't had any new lesions and haven't had any exacerbations since I've been on the medicine. I do know some friends I've met along the way that became JCV positive and had to unfortunately come off Tysabri. But it's been helpful for me.

[Royjr in reply to JeenaRae]

That's what I tell people that's ask me how can I be on Tysabri so long (8 years). It's true if you're JCV positive it increases your chances of getting PML but not that you'll differently will, it just increase your odds. To some that's enough to get off Tysabri. Even if you're not positive you have a very slim chance of getting PML on Tysabri. I'm like you, it's in GOD'S hand and I don't worry about it.