tysabri info

Talked with Tysabri caseworker this morning and gleamed some more info as follows; You call them or Tysabri in my case and tell them you are interested, they then send a referral notice to your doctor and in about 2 weeks someone calks you from undetermined #, I asked to be notified or gave them leave a msg as u don't answer for numbers I don't know, and they will discuss your insurance info then, etc.

m still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control. but Tecfidera should be able to keep it under control.

OK guys I need info..... anybody here on Tysabri? Anybody been on it previously? Any first hand input is helpful, as well as any info in general. My neuro tossed it out at the appt today - COMPLETELY blew me out of the water. Never saw it coming. The Rebif makes me sick and he's concerned that things keep advancing and I've never really had the elusive remission... :) He explained alot about Tysabri - truth vs hype.

I have been hearing lots on this bored about this infusion thing w Tysabri. Since I am new at all this, I can't figure out exactly wat it is when I google it. Can someone please explain?? Very curious over here! Thanks!

I have been on tysabri for over a year annd a half now. The only major side effect I have experienced is extreme fatigue. The first infusion was the worse and I wanted to do nothing but sleep in my bed. I also felt irritated because I was so tired (if this makes sense). The extreme fatigue lasted for three months or so after my infusions. This wwas over in a week or so and then I was fine. Now I get a little more tired after my infusions for abouut three dayS.

There is an alogirthm for the chances of contracting PML while on tysabri. I believe it is on the tysabri website among other places. I will see if I can find it for you and report back.

I do not have typical ms, but a variant that is still clinically not diagnosed. I have a great neuro @ Stanford & he is recommending I start on Tysabri ASAP. I read up about the JC virus, and regardless plan to begin treatment next week. I don't know anyone with ms or ms variants so I want to know more about Tysabri from people who are on it or have used it. What is your experience? Pros/cons? I have read about side effects but I want to hear your thoughts & how it made you feel.

To comment on Lulu's info, Tysabri is also an immune suppressant with much less info on long term use than the injectables. I have to be careful not to be around sick people cuz I am on the Tysabri. I agree with her that if one of the injectables works, stick with it. There is so much more long term research on them. I have to do more research on the oral meds myself. I think Tysabri and eventually oral meds is a last resort for me cuz the injectables caused me too many probs.

s mechanism of action. Tysabri blocks T- lymphocytes from passing across the barrier from the blood into the brain. Tysabri is probably the most effective of all the DMDs discovered to date. So it does correlate with the new findings in the article from the Huffington Post. This does not prove anything, nor does it speak to why the T-cells are drawn to the brain in the first place. Very interesting, Thanks for the info.

Again, just wanted to thank everyone for all the info on tysabri! Gives us a little more to think about! Hope everyone had a nice holiday!

I have never heard of a brain infection related to Gilenya … perhaps the doctor was referring to Tysabri, although a doctor should know the difference. Tysabri also may be worth a try. Yes, it has shortcomings, but like Gilenya, many people tolerate it well and have good results. I don’t know anything about gabapentin, other than that it is not a disease-modifying drug interchangable with Gilenya, Tysabri, Copaxone, Avonex, Rebif, and Betaseron.

So now he wants to take me off of the Copaxone, I have been on for a month and a half, and put me on Tysabri. I started the application process and now waiting for them to call me and get the ball rolling on that. Now he mentioned that this is the top of the line MS medication so that does give me some relief. P.S. I did test negetive for the JC Virus. Any thoughts, experiences etc on this Tysabri??!!

I have never been asked to have monthly blood tests. I glanced through the Tysabri Prescibing and Patient info and saw no mention of this protocol.

I had been on Tysabri for 22 month's and just recently stopped. I was wondering if any new info. is out there on the drug Rituxan for MS? I have SPMS with RRMS. I was in a study 3 yrs. ago at UCSF and did really well on Rituxan. However, Rituxan is not an approved drug for MS and at that time my insurance would not cover it so I had to discontinue taking it. Or should I just take a break for awhile and not take any ms med"s?

Good info Alex. Thanks for sharing. I wish we had those meeting around here. You would think that the DC area would have more going on, but either I'm not hearing about them or they aren't happeneing. I'm glad you are involved though.

she things, but likes to know more info about the meds. She is more comfortable with Tysabri then Gilenya, and hasn't put anyone on Gilenya yet. The MS center is having a study with about 250 patients that will be prescribed Gilenya. She has "only" put about 30 people on Tysabri at this point, but believes that will increase once she is more confident with the meds. She has been an MS neuro for quite a long time, and I completely trust her, and feel I have gotten enough info.

He asked me whether I was interested in being in the Tysabri study. I am only 37 and have only had one relapse. I know I will be deciding on a treatment and not sure what direction to go. This neuro is big in research and he spent a lot of time talking with me about MS. He mentioned a JC Virus and took my blood to look for it. If I don't, I would be a good candidate for Tysabri. It has 67% reduction in relapses but also risks getting PML.

Could you give us a little background on what meds you've tried and for how long? I'm sure you've mentioned it before but I have a hard time keeping track of so much.

I have read on here by several members, that they have not considered Tysabri or Gilenya because their MS is not that aggressive. What does that mean? I was dx Jan 2010, MRI showed approximately 10 lesions, I had a real hard time accepting my dx....I really wasn't sure I had MS, so I refused a DMD. Then in Oct 2010, I had a new MRI that showed an additional 5 lesions. My Neuro said that we needed to get aggressive and he suggested Tysabri and/or Gilenya.

) We are hoping to have a source with more info, so that it can be easily referenced by anyone seeking insight into Tysabri. Here's some things we thought would be helpful for others to know: When dx'd? Other treatments prior to Tysabri? How long were you on them? How long have you been on Tysabri? Do you feel it is helping? Have you had any side effects? If you were on Tysabri, did you have to stop the treatment for any reason? If so, why?

I have been taking Tysabri for about 10 years now. After my treatment yesterday, we stopped at a house we own and worked in the yard about 10-15 minutes. After taking my shirt off when we got home, my husband told me to go look in the mirror at my back. They looked like bug bites, yet we've worked in that yard for about a week and I have not been bothered. I then began to wonder...did this happen because of my treatment....or are they just bug bites of some sort?

Common Questions and Answers about Tysabri info

tysabri