tysabri studies

This release last week announced that Tysabri is now in Phase 3 studies for use in treating SPMS. That has to be good news for anyone following the ASCEND trial. You can read the details at - http://www.biogenidec.com/PRESS_RELEASE_DETAILS.aspx?ID=5981&ReqId=1653040#.TyFoJl4mTgY.

Studies have just been released noting that psoriasis patients in Europe have come down with PML after using the drug Fumaderm. A key ingredient is the dimethyl fumarate also used in Tecifidera. The media are jumping all over this, and Biogen stock was affected adversely. However, other ingredients are not the same. The FDA was aware of the Fumaderm issues when it approved Tecfidera.

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.

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'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.

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.

According to my neuro the first studies on Tysabri are not correct. The rate is more like 40 to 45% more effective than the others.

As of March 2008, more than 26,000 patients were on Tysabri® worldwide. Since the re-launch of Tysabri in July 2006, no new cases of progressive multifocal leukoencephalopathy (PML) have been reported. PML is an often-fatal viral infection of the brain. Data from the PLEX study suggest that plasma exchange may be an effective procedure for accelerating the removal of Tysabri from the blood if PML infection is suspected.

My neuro would like to see me on Tysabri but I would prefer it to be on the market longer with more studies as to why some get that brain infection (one in one thousand). What I am doing is trying to buy time. I have agreed that if things become worse then I will do it. I have only been under the care of a competent doctor for six months. I know the MS is out of control and I know it is a gamble to wait. I guess my answer to you is...fear...plain and simple.

The Risk of PML is greatest in the setting of a positive J-lymphocytesC virus, greater than 24 months of Tysabri, and concurrent use of other DMD's or steroids. Those are old recommendations, and new info will change them in the (near?) future. PML is caused by the J-C Virus. A little more than half of all people have been infected with the JC virus. It generally lives asymptomatically in the brain unless something has occurred to cause the immunity of the brain to be compromised.

I am now going in to get on the tysabri after trying all other meds. Just wondering if anyone has heard like I just heard. Not really scared but I was like what the hell else can I have now.

She said I could still do Tysabri for a couple of years. I declined. Then she wanted me to do Tecfidera. There have been at least 5 cases of PML in patients treated for psoriasis with Tecfidera (different brand name, same generic drug though). Now there has been a case of PML in the US in an MS patient being treated with Tecfidera. My doctor talks to me like I'm an idiot because I'm just not real excited about doing one of the drugs even though I'm JCV +.

Here is what my neuro had to say about that, as many of you told me, many people who are JC+ take Tysabri. He explained that the TOUCH program allows them to monitor patients making it much safer. He did however tell me that I would be allowed to stay on Tysabri for only a year at best. Then he told me that although people feel great on it, as soon as they stop taking it they "crash and burn", meaning they feel terrible and begin having many relapses. Well that sure turned me off!

I saw my neuro on Friday and in the course of a fairly long appointment and discussion, I asked a lot of questions. One in particular had to do with oral meds, which we've been told for years are right around the corner. He says yes, they'll definitely be available very soon, but prescribing them will be difficult because of their side effects. Only select patients will get them. I asked if this included those who couldn't tolerate or just didn't do the injections.

I had a Spa weekend :-) Thursday I saw my psychotherapist, Friday I had my 6 month follow up MRI's and yesterday I had my monthly Tysabri infusion. All of this took place under one roof! The MRI's are brand new and have only been up and running for a week. There are two 70 cm, Open Bore 3T machines. The opening is much larger than the older machines, which makes the experience less dreadful.

Does anyone know or have any experience with the effects of tysabri on bone surgery?

I told him I was here because the folks at Tysabri say I need to see you every 6 months, but I did have a question - when does the remitting part come in? He shrugged and said this may be the best we can do after that last flair last November. Then, I asked him, "am I transitioning into more of a secondary progressive phase?" and this is what he told me: "The answer to that question is being slugged out in academia.

They found out the reason people contracted PML was because they were taking Avonex/and the other MS medications with Tysabri. I think the Tysabri has given me a second chance at helping slow my disease progress, but with out it I would be on no MS medications to slow the disease. I did alot of research before I decided to start the medication and the one resource that helped me make my decision was reading the Tysabri diaries on line. www.msrc.co.uk/index.cfm?

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.

Tysabri studies

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