tysabri ms drug

Hi BL- Welcome to Our Merry Band :-) I was diagnosed 2 years ago, at age 51, with SPMS. My first, and up until a week ago my only, DMD was Tysabri. When I was diagnosed we were able to connect seemingly random events over the previous 20 years. What seemed completely unrelated was related. All were symptoms of MS. Because I'd had MS for so long my doc thought I was out of reach of the injectables. At the time the orals were just starting to come on the market.

Recently diagnosed with MS (November) and they are starting me with the drug Tysabri. Trying to find out what to expect and if it is helping others with their symptoms? All new to this, really have no idea what I need to know or ask? Just looking for someone with some insight on what I will experience.

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 think the advocates told their stories to showcase the drug rather than to share life with MS. As you say, too much drug focus and too little people focus. I think that the "testimonials" might have been required to make some mention of heat sensitivity so they could put an audience drawing tag on the presentation. I think I have heard better answers to all the questions right here on the forum. I think this is the very first time Lulu has gone away from a presentation empty.

Hello, I have been very newly (June 6th) diagnosed with RRMS, based primarily on brain and spine lesions with only one round of numbness 4 years ago however with cerebral spinal fluid showing an overwhelmingly positive result for MS. My neurologist has held off recommending any drug treatment over these last 4 years that he has been following me on the basis that there were no further neurological episodes and there still isn't anything dramatic - just some fatigue, etc.

I am a no doctor. I have been to talks by MS Specialist and the thing is Tysabri can be a very affective drug but it does have a big risk. Personally your mother and her doctor have to do a risk analysis and she has to decide what is best for her. There is no right or wrong answer.

that said, I would really question why he would immediately want to jump to the big gun of Tysabri when you are drug naive to everything. Ty is almost always only used if the other stuff hasn't worked. The risks are really small when you consider the large number of people worldwide who have been on Tysabri, but that is absolutely no consolation to those patients who have contracted PML, for which there is no cure. The oral drugs also have side effects.

Hi I was diagnosed with MS in May of 2001. My neurologolist wants to me to try Tysabri. I have already tried the shots for ms and they don't work to well with me. But I already have most of the side of effects that go with tysabri. Please help me.

You don't say how agressive your MS has been but at eighteen I would also wonder about the wisdom of starting off with what is considered to be one of the most agressive treatments presently available. While totally respecting your aversion to injections, specifically self-injecting, I'd caution about letting that be the deciding factor in turning to a drug with the potential to cause much bigger problems.

darn iphone, it thinks it can spell what I really said was........I've had SOME ups and DOWNS that were BLAIMED on Tysabri but now considered to be caused by MS in general!

I'm not on Tysabri, but want to bump this up so that your message doesn't get lost. My sister is on Tysabri, which she's been on for two years now. Her MS is not behaving like someone that has RRMS, as her MS is more like a train that keeps barreling down the tracks and is unable to be stopped. She was on Rebif for a year and she experienced a sharp decline over the course of the year. She started Tysabri, and her disease has slowed, but it's by no means stable.

m still plugging away on my drug study. Nothing new to report MS-wise, but my weeks are filled with a lot more activity these days. I tutor OAPs in computer skills three days a week at three locations in town. Keeping track of the times/places is definitely keeping me on my toes!

I too had my blood test JCV+ last month. My CSF was still negative. This means that I'm still OK Tysabri wise speaking. My neuro likes to reevaluate Tysabri use at 24 months. I had infusion # 18 last week. He thinks I would be an excellent candidate for Tecfidera. He said that if DMD'd were ranked from 1-100, in terms of 'power' Tysabri would be 100 and Tecfidera would be 75/80. As my MS seems to be pretty well under control. I may have needed Tysabri to get it under control.

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.

Hi Calliesue - Welcome to our group. I had 20 infusions worth of Tysabri. I swited to Rituxan because it stopped working for me. While I was getting Tysabri I had no ill effects what so ever. I loved the 'convenience' of monthly infusions v. daily or weekly injections. There are many folks here who have been gatting Tysabri for years with good results.

My first DMD drug was Tysabri and I have been on it almost 2 yrs, and was JC+ from the start. Tysabri is very good at lowering relapses, but of course, does not correct anything already there. You may continue to have relapses or attacks, it is not 100%, but does a good job. It is not usually a first drug, as you have been told, but your doctor had a good reason or he would not have put you on it As Kyle said, let your doctor know…….

Tysabri is a more potent drug that the initial ones many people are offered -such Rebif, Avonex, or Copaxone - and it sounds like your neurologist wants to treat your MS agressively. that is a good thing. I would have a talk with the doctor and ask all your questions, including what type of MS does he think you have. It would be highly unusual for someone with PPMS to be offered a disease modifying therapy because they haven't been proven to be effective for that form of MS.

I just heard a local neuro talk about using doses of steroids to control MS problems during the washout period (usually about 3 months) between tysabri and gilenya. Your final statement to Sarah is so wrong in so many ways - the doctor who says you don't treat a progressive disease needs to lose the medical license and get into a different line of work. There is definitely treatment for all of us...

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 +. She said my disease is very active, which I'm well aware of -- I'm living in this body, not her.

Friday I called my neuro to find out if they want me to do a washout period on Tysabri, as they are considering me for the new drug out in March. I've ben on Tysabri almost a year and JC+ from the start The nurse told me my test showed 1.03. which means nothing to me. Anyone know anything about this test?

MS is different for each of us, but if you are familiar with the 5 stages of death, MS runs along the same parallel, but we can go in and out of them and not in any particular order. Denial is my favorite when I am feeling good and have been good for awhile. My latest neuro thinks I've had MS since 1981 (no MRI then) and I went thru 3-4 before finding this one, 3 states away, and won't give him up for anything.

While she was there, a couple of other people with MS getting their infusions had some good things to share with her about Tysabri. Both reported that the effects of the drug were immediate. The energy they had lasted three weeks and were back to low energy level a week before their next infusion. Both ladies reported that they had no more progression of lesions since starting the drug. One said that her lesions completely disappeared!

Tysabri was my first drug and I've been on it at least 3 yrs now. I have had no new relapses that were permanent. I wear a foot brace because no one diagnosed it previously. I was also JC+ from the beginning. I have the usual "bumps in the road" that don't last long, but that's MS, it hits us all differently. It is wonderful to only worry about drugs every 28 days! Biogen is wonderful and has a super support system. Go for it!

Tysabri ms drug

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