tysabri users forum

t believe our paths have crossed yet here on the forum. There are only a few folks here on Tysabri, but we have discussed it a number of times. If you get the time and feel inclined, please share a bit more about your journey with MS and why Tysabri is now an option for you. We tend to think of it as a drug of last resort when the other therapies have failed to slow the disease progression. Welcome again. I hope to see you around again.

//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.

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 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.

//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?

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.

I'm sure other Gilenya users will pipe in, as well. I've read Gilenya is right up there toward the success rates of Tysabri re: relapse activity and slowing of disability. I hope you do well on it. You definitely deserve a break!

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!

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!

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

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.

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.

Hi there, so sorry you post slipped to the bottom of the page! I have not seen it, but we do have Tysabri users on the forum who have been on it for years. I'll bump this, and then hit up one of our veteran members to see if she can help!

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.

m starting tysabri - first infusion tomorrow. After going through a nightmarish war with my insurance (you probably know that...) it was finally approved. So tomorrow if THE day. I think I'm slightly nervous after all (thought I wouldn't be). I'd love if you could share your post-infusion experiences - should I expect any awful side effects? If so, how long do they usually last?

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?

Tysabri users forum

Common Questions and Answers about Tysabri users forum

tysabri