tysabri users group

//www.medhelp.org/posts/Multiple-Sclerosis/Our-Tysabri-Users---Past-and-Present/show/658918.) 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?

I recall that TLC_31 has said that he had to discontinue Gilenya due to cardiac side effects. I can't recall anyone else here (of the regulars) who has tried it. Try searching the forum using Gilenya as keyword, to read past posts about it. If you're on Facebook, search for the private group Gilenya. I joined it recently, and the Tysabri group too, as I'm facing the same decision you are, Candy.

s the official story. Many Tysabri users report a performance boost just after infusions and a drop off in performance just before the next infusion. I received 20 Tysabri infusions and didn't really feel much of either one. The good news was that I did not feel any obvious progression of my MS. Secondary Progressive MS is the eventual landing spot for 85% of people diagnosed with RRMS. I am among them.

//www.medhelp.org/posts/Multiple-Sclerosis/Gilenya-Users-Past-and-Present/show/1469412 http://www.medhelp.org/posts/Multiple-Sclerosis/Copaxone-users---past-and-present/show/643683 http://www.medhelp.org/posts/Multiple-Sclerosis/Tysabri-Users---Past-and-Present/show/1569374 http://www.medhelp.org/posts/Multiple-Sclerosis/Aubagio-Users-Past-and-Present/show/1946899 http://www.medhelp.org/posts/Multiple-Sclerosis/Our-Tysabri-Users---Past-and-Present/show/658918 http://www.medhelp.

Hope this helps http://www.medhelp.org/posts/Multiple-Sclerosis/Our-Tysabri-Users---Past-and-Present/show/658918 http://www.medhelp.

Hi, Rita, I'm slated to start Tysabri the end of December or early January. Obviously the prescribing PDF left me wondering if I had made a good decision. Your original post was really informative for me, and I'll check out those other Tysabri users' blogs. I know I have time to change my mind. Thanks!

My dco says that a postive serum test for JCV is not, in and of itself, a big concern for Tysabri users. More important is whether or not there are JCV antibidies present in the CSF. This indcates that there is current JCV activity. So if the CSF comes pack positive we have to talk about switching off of Tysabri. If the CSF comes back negative I'm OK for a while. We talked about what happens when I hit 24 infusions.

We have a thread here with Tysabri patients discussing their experiences on it. Here is the link: http://www.medhelp.org/posts/Multiple-Sclerosis/Tysabri-Users---Past-and-Present/show/1569374?controller=posts&action=show&id=# If for some reason that doesn't work, just put in "Tysabri users past and present" in the search area at the top and you should find it. I go for my 40th infusion tomorrow. Feel free to PM me if there's any way I can help.

Hi Neena!!! Thanks for joining us :) I'm sorry you are having new worsening problems. Have you alerted your doctor? This may be a relapse for you and a course of steroids may help. Or, was the Tysabri suggested because the doc feels you may need a switch in meds? We do have Tysabri users on our forum, and I'll find a discussion about it and post the link here. It would be great if the Tysabri would indeed help you get some strength back.

We have a few tysabri users - cosmobirdy and huff come to mind without much effort. You might PM cosmo - she is more than happy to share her experiences. Huff has just had one infusion so probably can't be as much help right now. good luck with this change - I hope this one will be the one for you!

I feel very tired for a few days after I receive my Tysabri infusion. Is that normal or is it in my head?

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.

Disease modifying drugs do NOT treat symptoms. You will discuss medications for your symptoms (such as fatigue, muscle spasticity, etc) separately with your doctor. DMDs play the long game and aim to reduce the number of relapses experienced over time. Your doctor or nurse should have given you the drug information packet when presenting this to you as their recommended option. If not, you can go to Tysabri's website or the NIH website to find published papers and statistics on its usage.

This report is from the NASDAQ ******* business site - tracking key issues on the stock market - Biogen's stock fell Friday on heavy trading with the release of this news about their star drug ...... it is astonishing to think they make $1 BILLION dollars a year on this drug. - Lulu 4th UPDATE: EU Reviewing Biogen, Elan's Tysabri; Cites PML (Updates with FDA comments, beginning in the third paragraph.

I am 65 been on Tysabri for one year, tell me in my age group how long does most people stay on the drug?

t do a lengthy washout period after stopping tysabri and I understand that patient had also been on tysabri for a longer period of time. How will they ever untangle is it was the Gilenya, the Tysabri or both that opened the door for PML to enter? Argh! Why aren't answers these days just clearly marked? I hate having all these unanswered questions about therapy that is so critical.

And even if Tecfidera ultimately was directly connected to PML, know that Tysabri is too, and yet the vast majority of patients use it safely every month. It's something to be aware of, but no reason to throw out the Tecfidera yet. http://www.foxbusiness.

I've been tested twice in the last year, and they were both negative. Since you can acquire JCV at any time, I opt to have my status tested once a year since I'm on Tysabri. There is also a Tysabri antibody titre available, now. I plan on doing that once a year, too, although development of Tysabri antibodies is relatively rare.

he has been on betaseron for 2 years, ivig for 2 years and tysabri for 2 years. he has not ben on any meds since aug 2010. he is now on steroids and has to decide what med to go on. he had to stop the tysabri because he was building up antibodies against the medicine. he former doctor suggested he go off it and consider the oral medince. since then his doctors prtice closed and now we are seeing a new doctor. we are very confused. does any one have any advice?

Hello, I was wondering if I took tysabri with having MS also RSD because with having the rsd it does weakend my immune system, I don't believe this would be a very wise decision do you?

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