tysabri patient ratings

d encourage you to be patient and learn learn learn for, perhaps another year, during which time you prepare your body for pregnancy. I'm not a physician, but am a long time (~35 years) Type 1 diabetic. Good luck. Do check back, as I"m sure others will want to comment on the very important questions you ask.

A large number of us are on Tysabri - I've been on it for 4 years? Wow, I just had to count that and am surprised at that timing. I particularly like it because I am committed to a schedule I can't cheat on and once a month i have the infusion and then i am done. If you go on tysabri, or any other drugs, be sure and get on their patient assistance program. It is great help with the co-pays.

I read this morning that the Gilenya patient is in Australia, and had been on Tysabri for 3 1/2 years, not 3 years. The article also says that the patient was started on Gilenya after only being off Tysabri for 6 weeks, when the recommended washout period is actually 12 weeks. There are still alot more questions than answers about this situation - hopefully more specific information will continue to become available, so it can all be put into better perspective.

side effects for each other medicine and now this with tysabri. Has anyone else been on tysabri and developed c. Diff from it? If so, what did they do to help it? Stop tysabri? Any information would be greatly appreciated.

The test does not eliminate anyone from taking Tysabri. What it does do is makes the doctors aware that this patient is at higher risk for PML and they should be momitored closely while on Tysabri. I;m glad to hear she is doing well - I hear great things about Tysabri. BTW I did the test and tested negative. 65-70% of people with MS test positive for the JC Virus. JC is because that is the initials of the first person this virus was see in.

You can also call Tysabri at their toll free number and talk with them without being a patient. Their number is on the webside.

Repeat testing at three months after the initial positive result is recommended in patients in whom antibodies are detected to confirm that antibodies are persistent. Prescribers should consider the overall benefits and risks of TYSABRI in a patient with persistent antibodies." As to what comes after Tysabri, for me it's RItuxan (rituximab). After 20 infusions Tysabri stopped working. I switched to Rituxan about a year ago and it seems to be doing the job.

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.

The thing with all medications is you have Benefit and Risk and you have to weigh these things carefully for every individual patient. I know many people who swear by Tysabri and others not willing to take the risk. If the regular drugs will not work or you have a fast progressing case than you might take the risk. Others can get into the more technical aspects of Tysabri there probably is a health page devoted to it.

there are excellent patient assistance programs for all of the drugs. Your insurance may have turned down the Tysabri request at first because they normally want you to try something different, first. It is seen as a second line therapy after the first ones don't work. Now that you can't do copaxone, your insurance should revisit the request and hopefully approve it. I went from copaxone to Tysabri without doing the interferons.

It involves only one patient so far, and that patient is still alive. Despite ahving not used tysabri, they had used an interferon just before Gilenya, and steroids both before and during the Gilenya treatme t. Worth keeping an eye on this story, for sure.

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.

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.

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?

I am not complaining AT ALL, but I have not been exercising due to the pain in my legs so this weight was not lost by my effort. He showed concern but claimed he has never heard of Tysabri doing this to any patient and to follow up with my GP. I felt VERY much like a lab study and not an MS patient. I had an appt with my GP two days later and he about flipped his lid. He went through the history report sent to him from UCSF and pointed out to me issues dating back to when I was 15.

The injections only work 33% if started at the beginning stages of Relapsing Remitting MS. There is Tysabri an infusion and their are drug trials for oral medications. Sometimes they can even use chemo but it is rough stuff. Unfortunately to date these are the only proven treatments. Some people go to other countries to get stem cells. The problem is stem cells can't repair damage they can only in some cases slow future damage but usually only for awhile.

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?

I'm not sure how they are going to work that one out. They certainly won't admit it I am guessing. I know when I was searching for "gap" insurance, the big thing with them was kidney dialysis. However if you are on meds already, not sure how they can change it. As long as you have no coverage gaps, and I don't remember where, but for example, there are studies that Tysabri is now being used (along with another drug but can't rememer that name) for progressive MS.

Those who start out negative are monitored regularly, and if negative turns to positive, then a decision must be made between doctor and patient. Some continue on Tysabri regardless. I know quite a few on Tysabri who are doing extremely well, with few or no relapses since starting the treatment. Having a livable life is worth it to them, because earlier drugs did not work.

Not to mention, that I will soon run out of good sites. I am a bit afraid of the Tysabri. Though she says there have 6 or so episodes of PML, some were Europe where they don't have the Touch program and pt are not followed as closely. She says 83% of users have no flairs in a 2 year study. She will see me monthly or sooner of course if necessary.

Tysabri patient ratings

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