tysabri ms community

Hi everyone, I'm new to this community. I'd like to know if anyone on tysabri has ever developed a bad itchy rash. I'm waiting results of antibody test to the tysabri. Good luck to all!

Chris - I had 14 infusions of Ty and the only side effect I had while on it was mild migraines and other symptoms flaring up about 1 week prior to being due for my next infusion. I can also say that prior to Ty, I was on another DMD for 1.5yrs that didn't have any positive effects on stopping lesions from being active or growing. Since being Dx'd, I've had extreme pain in my hips and thighs and sometimes the heels of my feet, but that last one is rare.

My sister, who has MS, is having the Tysabri infusions. I believe she said that her medicine and infusions costs are $7,000 a month. This medicine is quite expensive, and is usually not the first drug of treatment when diagnosed with MS. Typically, the other disease modifying drugs have not worked before this one is prescribed. As far as taking shots for the rest of my life, I really doubt it. What I understand is that a new oral medicine, Fingolimod, will be available next year.

Hi SS - Congrats on your move to Portlandia. Even bigger congrats on getting back in your running shoes! Keeping our bodies as strong as we can is really important. As to Tysabri's healing powers I'm not so sure. I am sure that it is effective at dramatically slowing the progress of MS. I'v had 18 infusions and Tysabri is the only DMD I've used. Since starting Tysabri I've seen no appreciable worsening of my MS. If I can stay where I am now I'll be very happy.

Does anyone take LDN for their MS? and what do you think about it? Any info. would be appreciated.

Has anyone been recently been diagnosed with MS and awaiting Tysabri treatment? And been suggested that they may have Bipolar disorder due to several mood swings?

Using Tysabri as a first DMD has more to do with the stage of your MS than your age. My first DMD was Tysabri. It was chosen because by the time I was dx'd I'd moved from RRMS to SPMS. There are no DMDs apporved to treat SPMS. This means that the firstline meds Copaxone, Rebif, Avonex and Betaseron (CRAB) are not generally effective against SPMS. The same is not true for Tysabri. It is considered to be more potent than the CRABs and is used in SPMS cases.

However, she was also told that if she were to stop tysabri she was pretty much guaranteed to have an attack of the MS. She has an agressive form of MS and other medications don't seem to work. We haven't seen much improvement with tysabri, but at least she hasn't had anymore attacks while on it. Can anyone shed more light on this for me? I was hoping to gather more information on this if anyone has it. Please let me know! Thanks!

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.

However, I will try to provide you with some information regarding rituximab in MS. I will say though that as you know, the goal of therapies for MS is to prevent relapses and accumulation of lesions in the brain and spine. While being off medications for a few weeks or even months is probably not detrimental, in the long term, it is optimal for patients who can tolerate the side effects of MS medications to be on them.

The research side of my MS Practice has identified a CSF biomarker for disease activity. The research is featured on the cover of this month's Multiple Sclerosis Journal. http://tischms.org/news/tisch-ms-breakthrough-biomarker-research-featured-cover-article-october-2013-issue-multiple I'm a beneficiary of this discovery. I had been on Tysabri for 20 months. At 18 Months I converted to JCV +, and we discussed switching from Tysabri to Tecfidera.

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.

//www.medhelp.

I do not have typical ms, but a variant that is still clinically not diagnosed. I have a great neuro @ Stanford & he is recommending I start on Tysabri ASAP. I read up about the JC virus, and regardless plan to begin treatment next week. I don't know anyone with ms or ms variants so I want to know more about Tysabri from people who are on it or have used it. What is your experience? Pros/cons? I have read about side effects but I want to hear your thoughts & how it made you feel.

He reiterated that point yesterday. There are pluses and minuses to all MS meds. For me a big Tysabri plus is that I only have to deal with it once every 4 weeks. The thought of daily or weekly self injections was not all that appealing to me. Right before I saw my neuro yesterday I saw my naturopathic doc. Her office is two doors down from his, in the same MS practice. They work together and each is aware of what is being discussed with the other.

I hope you will take the time when you feel up to it and post some details about your MS and treatment with Tysabri. It could be helpful to others. Again, welcome!

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.

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.

While having a couple of steroid infusions I got talking with a few Tysabri regulars who see each other every month. One woman told me she had been an MS mess before Ty, and after starting the drug she had had absolutely no more MS problems. Lots of people here would say the same. The only issue is whether you are JC negative, which I presume you are. You go, girl!

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