Tysabri website

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tysabri

4848471 tn?1372238752 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.
Avatar f tn 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.
Avatar m tn yes, PML is fatal, always. I got my information from the Tysabri official website. Although those numbers may/may not be correct, you need to look at what these people were on, medication wise. This is important. My theory is that "there is no free ride" regardless of what drug you go on for what condition you might have. You can also call Tysabri at their toll free number and talk with them without being a patient. Their number is on the webside.
Avatar f tn That is a great website, with the diaries of the people who are taking Tysabri! I used it alot also, when I was doing my research and trying to decide whether or not to jump into the Tysabri pool... :) A number of the people who have posted their Tysabri diaries also have email addresses listed, and you can write to them personally.
Avatar f tn Are any of you on Tysabri? My doctor has suggested that I consider starting Tysabri treatment. His neurology practice runs a TOUCH infusion center. I've been on Copaxone for four years and have just had my first flareup. My recent MRI shows progression of MS with T2 hyperintense white matter lesions in the pons of the brainstem and the frontal lobe. Several of the older lesions have increased in size. Five years ago I was on Avonex. I had multiple flare-ups the whole year on this med.
1637739 tn?1371688706 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.
294425 tn?1288528395 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.
2063887 tn?1337829746 I was scheduled to have my first Tysabri infusion tomorrow morning at 8:30. The infusion nurse called me Friday at 5:00 and told me we needed to reschedule because they needed one more thing from insurance. This is the same thing that happened with my first insurance approval and then it was denied. I'm worried the same thing is going to happen this time. They had me reschedule for May 30th. I'm afraid to get my hopes up. I guess time will tell.
1115136 tn?1258778476 I failed Rebif (according to my Neuro) and my last attack that I'm still getting over, has left me with some amazing spacticity and a R leg limp. I've had 3 flairs in the last year. I've been off the Rebif since 8 Nov., and the plan is to start Tysabri in January. Needless to say, I'm more than a little concerned. I'm in my early 50s, and expecting my first grandchild in August. I want to have lots of fun with this kid!
5681139 tn?1372268736 Now, based on the last MRI, he has officially diagnosed me and is recommending that I go on Tysabri infusions. From what I can tell on this forum, it seems like he's hitting an ant with a sledgehammer. It seems very unusual for people to be prescribed Tysabri right off the bat. I am very confused as to what drug to go on, if any. His first choice for me is Tysabri, followed by Gilenya, followed by Copoxone.
Avatar f tn I was looking at the tysabri website and it does say to call your doctor if you are having problems.Maybe if you talk to your neuro he can do a phone consult with the UCSF specialist so you don't have to make a trip up there. It's worth a shot, but that's where I would start.
Avatar f tn I have had MD for 18 years. Been on Avonex, Betaseron, Tysabri, and now Tecfidera. Unfortunately, I'm also on lots of other medications, mostly due to terrible central pain. My neurologist made me stop the Tysabri after 24 infusions because of safety concerns. I felt my overall best while on Tysabri and have asked him if and when I might be able to go back on the monthly infusions. He does not have an answer for me at this point.
572651 tn?1530999357 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.
382218 tn?1341181487 This is regarding my previous post about the more aggressive route my neuro may want to take (Novantrone), should he take me off Rebif permanently. I've been considering the alternatives (Copaxone, Tysabri, etc), AND, Ess's suggestion of getting a second opinion. I had the thought that, if I'm going to pursue another opinion, I think I ought to stick with MS specialists. I have dealt with a couple of other good neuros I could contact, but neither deals exclusively with MS.
1827617 tn?1317703371 My new neuro suggested Tysabri based on increased lesions on Interferon (Rebif). Any persons out there on Tysabri that could share their experience?
Avatar f tn Many people who come off of Tysabri have been put on Gilenya pills. You would have to get checked first for heart issues, immunity to chicken pox and maybe one or two other things, and have an eye exam to rule out macular edema (swelling). Then of course you have to get approval from insurance or proof that you could afford the pill. Once that happens, you get scheduled for a 6 hour appointment for your first pill. They keep you on an EKG to watch for lowered heart rate.
Avatar f tn So, are you driving 4 hours each way once a month for your Tysabri? I am sure you can find a infusion site closer to your home. Just go on the Tysabri website and it will show you a list of sites and also, neuros that are already a part of the TOUCH program. Here is the link, you can put in your zip code and it will give you a list of doctors and if you look at the links to the left, you will see one for infusion sites too. http://www.tysabri.com/tysbProject/tysb.
1760800 tn?1406753451 He feels that Tysabri is the way to go. I know that there are others here on it or used to be. I would love some insight on what to expect, how long it takes, etc... Thanks!
1088527 tn?1425313375 I will start tecfidera in 3 months I hope I dont have the rebound effect I have heard about after stopping tysabri. Tysabri has really changed the way I feel was using a walker now nothing and I do Zumba too. I hope I stay like this but having doubts. anyone using tecfidera? How was your experience.?