Tysabri

[MS2014]

Is anyone taking this? If yes, what have your experiences been like?

[AnuragS]

I have been on it and just 4 times I was JCVirus + ... but haven't been on any meds for 7 months and I'm am feeling the same as before I was on tysabri.

[akfunguy]

My wife gets it in a transfusion monthly...works really well for her.

[MS2014 in reply to akfunguy]

Good to hear this!

[Kryptonian]

My first infusion is on the 3rd of October I'm wondering the same thing you are. If you haven't found any answers out I'll let you know when I log back on after that date.

[techyjtmb]

I have been on Tysabri for 16 months now. For the most part it has slowed my disease progression. No side effects that I can tell. Two days prior to infusion start drinking lots of water, it makes the i.v. so much easier. The standard infusion takes 1 hour and then they usually run normal salin for 1/2 to 1 hour. It is scheduled every 28 days.

[Bobby59]

Hi, I have been on it for 3 years now. I went from using a cane to walk. For long walksI needed to use a wheelchair. I was on a ton of meds. Now, no cane,wheelchair and almost no other meds. I feel great. I have my blood tested every 4 months to test for the jc virus. I hope you have the same results.

[Justrubl]

I was on it 2 different times. I had great results with it. I am JC positive but for me personally I don't care. I do really well and want to go back on it. The first time I was on it I changed to try a oral med, and didn't go as well on it so I went back on it and improved so I went back to work and didn't think I could take off once a month to do the infusion so I went back on the oral med and started having problems again so I want to go back on it. I didn't have any issues with it. No side effects. The infusion takes an hour and then they watch me for a half hour. The infusion happens every 4 weeks. The only "issue" was that my veins aren't so good so I had a port-a-cath put in. I love it. It is easy access and I don't have to worry about my vein having issues like they did before the port. My boss is ok with me taking off half a day once a month. She feels like she can take care of things and she is willing to do whatever she needs to so that I can continue to work. I am so thankful for my boss.

[Juleigh21]

I've had 8 infusions of Tysabri so far. Around month 4, I found that I feel much better a few days afterwards. However, the last week before the infusion I'm feeling a lot of symptoms again. Wish I could have it every 21 days! Good Luck to you👍.

[MS2014]

Thank you, I have been on Tysabri a little over 2 years. It has helped me to walk, drive, keep my job, the dizziness has been reduced, and I don't fall at the drop of the hat. This is the only medicine that I have been on.

[April-1995MSWarrior]

Never again... worst headache ever for weeks. Side effects outweighed the benefits (none of which I saw). Felt like I was in an exacerbation.

[ItsChris]

Hi. I've been on Tysabri for over 7 Years now. Having taken Betaseron prior to that, I would call it a wonderdrug FOR ME because of the lack of apparent side effects.

Are you going to feel "different" after taking it? Nope. Will it make a difference? I'd say so. Some of the reports that people suffering with issues regarding heat intolerance improving is true for me. But to put it in perspective, instill avoid the outside heat and wear down in it. I do use my cooking vest less often. And I do find that I don't need to set the thermostat to arctic blizzard to be comfortable. It's minor improvements.

I was apart of the stratify study before people were even talking about the JC virus, when PML was a big scare and no one wanted you on the drug more than 12-18 months. Every extension of time was more worrisome, but it did work out - obviously

My MRI's have been stable for years now.

Get routinely checked for JC antibodies and you should be good to go.

For what it's worth, having evaluated all medication options and taken interferons in the past... I'm not switching to anything else until I hit JC ++

I'll cross that bridge when I come to it

[Royjr]

I been on it since 2008. At first I worried about PML, but after awhile I just put it in GOD'S hand. Getting infused every four weeks works for me. I didn't like self injections and the side effects was a pain. I don't have any effects from TYSABRI. I do know when it's time for my next infusion, my body let's me know it's about time. Heck, some of the oral drugs have a warning that it COULD cause PML. I know MS is different in everyone and treatments effects them differently, but for me it works and I'm 100% satisfied.

[JillLS]

My diagnosis was 24 years ago and I've been relatively good. Betaseron for years then new lesion so tysabri 3.5 yrs ago. MRIs are stable. Infusion left me weaker the rest of the day, less so after 1st yr. I don't work or do anything that requires a lot of attention the rest of the day. I must drink water the whole and have fluids infused. I normally have pretty low blood pressure- throughout infusion in can drop lower. Sometimes I have had to stay in the room and drink fluids till it comes up. Really not a big deal. I'm JC+ before even started. You're really only at risk if you're on chemo or are in some way immuno-compromised. You prob would not be on the med if you are! So I'm a fan of the drug. Helps that I love and trust my doc!!

[KKlynch5096]

I do think copaxone is the right drug. No side effects. Well one... you might have heart plain. Does not last long. And copaxone is only 3 times a week. Needle is S Q Not big at all

[Sarah_Ann]

I started Tysabri 32 days ago. My first dosage went great! I felt amazing the first week or 2. I even went to the Grand Canyon and walked the rim for a couple hours (7 miles). I went in for a second infusion a few days ago. I had an allergic reaction so my doctor is taking me off Tysabri. I am one of the few who seems to be developing antibodies to the medicine. Must be true being I don't feel any improvement like I did the first time. Definitely worth giving it a try.

[mepilot61]

I took Tysabri for five years or so, and I LOVED this drug!!! It is the BEST drug I have ever been on, and I'm on my 3rd now. I DID better, I LOOKED better, and I FELT better while I was on this drug. I am sad that I don't take it anymore. Good luck with it, if you start taking it! I think you will LOVE it, like I did!!!

[ajtiny]

I have been on Tysabri for about 6 years. I have always been JCV negative. I went from having to use a walker or cane to walking independently. I do feel pretty week and tired starting a few days before my infusion but then I get a burst of energy the day after.

[ReformedRosie16]

I am sitting in the infusion center at my MS doctor's in Pittsburgh, PA. I like the improvement in my walking. I seem to tolerate it well, with no JC virus so far. I have no problems so far. Hope this helps.

[MS2014 in reply to ReformedRosie16]

Great to hear things are going well.

[Shelly36]

Hello, I am taking Tysabri and it's improving my brain but not my walking. I still need my walker if I go out anywhere. The first infusion was about 3 hours, afterwards they keep you there to check for any reactions to it. After that its 1 hour for each sitting. Ive had 5 so far, no complaints from me. I'm JCV + as well that just means they do blood work on you more often. I would rather take a needle every 28 days instead of remembering pills everyday

[Twilli1789]

I was tysabri until November of last year it worked really well for me I the only problem I had with it is feeling drained after infusion

[Jesmcd2 CommunityAmbassador in reply to Twilli1789]

Hi Twilli1789 and welcome to the Monster ride So what are you taking now? I think a cpl ppl have said that about tysabri. I don't know anything about it. I'm on copaxon. Seems to be working so far.

Welcome again and jump in more often and introduce yourself

[Twilli1789 in reply to Jesmcd2]

Hi jrsmcd2.

Currently I'm not taking I'm not taking anything. I last year I quit my job and moved back in work the mother of my child and lost my health insurance so I haven't had my meds since November of last year open enrollment for insurance is next month. I'm definitely applying because my current insurance doesn't cover a neurologist or the meds I will need. I was wondering is copaxon expensive because tysabri is really expensive

[Jesmcd2 CommunityAmbassador]

Hi Twilli1789 l wish l had a price for you, l just tossed the paper away. But l have a very small co-pay because lm on ssa/ssi. Definitely get your insurance straighten out tho.