tysabri brain infection

Even the multiple sclerosis patients at highest risk of developing the brain infection face low odds of getting it while on Tysabri, but the infection can be deadly. "Now we can identify which risk group each patient is in. This will help doctors and patients make better decisions," said Dr. Gary Bloomgren, lead author of a study released Wednesday and vice president of drug safety at Biogen Idec, which makes the drug. About 100,000 patients have taken Tysabri at least once.

Last week when she went to the doctor, she was informed that patients who has been on the tysabri infustion for over two years have a greater chance of developing the brain infection PML. I believe she was told the odds went up to 1 in 800. 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.

She told me that 1 in 1000 patients get a rare brain infection (which is rather serious). However, data is showing that the rate is lower for patients using the drug for under two years. She feels that the benefits outweigh the risks. She wants me to consider it because I was left untreated for years and now the MS is out of control. She thinks going on Tysabri could calm things. I have yet to make a decision.

What I want to know is the lesions are active with new ones for the 1st time from being on copaxone after 6 years and I am doing fine or as I was before the new lesions can copaxone start to work again or to go on the new medicine to me sounds like I have 3 outcomes it might work or it will not work could kill me or make me worse with a brain infection with no treatment for that. If you have the JCV viruse in your body you can not take it and it has only been approved for the use of 2 years.

With Tysabri, people have a one in one thousand chance of developing PML, a bacterial infection in the brain that could kill you or- guess what- leave you severely disabled. Apparently PML is a demyelinating infection, too- to add an extra level of irony. My chances of developing PML are higher, because of the chemo. My other option is to keep doing steroids once a month- letting my body deteriorate. I am pretty sure that I am going to try the Tysabri.

The risk associated with being JCV + and getting Tysabri is PML. PML is a rather nasty little brain infection. In addition to monitoring my blood for JCV, my doc also used MRI to watch for signs of PML. My MS dod not advance, nor did I have any relapses while on Tysabri. I stopped for 2 reasons. The first was that after initially being JCV -, I converted to JCV +. At the same time my doc was able to determine that Tysabri was no loger working.

Have you been Dx and prescribed Ty or are you just checking out your options? Ty is heavily monitored, particularly here in the States, as it has had a brain infection problem in the past. If you are just checking it out, it isn't given too often as a "beginning" DMD drug.

As of now there have been two additional cases of PML an often fatal viral brain infection in Europe in two people who had been taking Tysabri for 14 months and for 17 months. So, currently the infection rate is 2 people per 6000 taking it. This is less than the "label warning" of 1 per 1000, but it really does dash the hope that the prior cases occurred because of the simultaneous use of other immune-modulating drugs. Phooey.

Of course you're a lab study - unfortunately a Tysabri TOUCH study isn't going to give you the kind of neurological care that you're needing. And it sounds like the people you've been seeing don't know much about MS, which is unfortunate. That the study excludes spine MRIs is also unfortunate - you'd think that they would include that information. But I can understand why.

thank you sarah for your experiencing, and yes my main concern is the fatal brain infection with tysabri and was thinking if i have to change might as well go with the best effective.. before i wrote deaths out of 52,000 ... meant 52 so same as the pill 1out 1000. I am getting my blood done monday and will be picking on the 26th which one... im scared but im pretty sure tysabri is what i am going to go with. had ms from 22 to 26.. also scared that if this dont work than what? you know?

May I ask a question about spasms? I'd like to know if man of you have experienced a sudden spasm in your back? I started the day with a searing pain in my lower back as I was just standing chatting and I ignored the stiffness/soreness and walked into town and back (about two miles) and when I eventually got back I found I couldn't sit without pain and I can only have stand up as the pain is so much.

Tysabri blocks T- lymphocytes from passing across the barrier from the blood into the brain. Tysabri is probably the most effective of all the DMDs discovered to date. So it does correlate with the new findings in the article from the Huffington Post. This does not prove anything, nor does it speak to why the T-cells are drawn to the brain in the first place. Very interesting, Thanks for the info.

I have been hearing lots on this bored about this infusion thing w Tysabri. Since I am new at all this, I can't figure out exactly wat it is when I google it. Can someone please explain?? Very curious over here! Thanks!

t do because of my kidneys. Then he suggested tysabri. My choice is not to attempt tysabri because of the chance of brain infection with my body making interferon and on the advice of someone dx'd with MS and living with MS for the past 30 years. So, now we are possibly looking at sandimmune or cellcept. Both anti-rejection drugs. Allergic? perhaps slightly to copaxone, sensitive to the side effects of others. What if you're allergic to beta?

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.

Well, my first post-Tysabri MRI has shown that it IS healing my brain and spine. The last MRI showed I had bi-lateral brain damage from the lesions. Since 1995 I have NEVER had an MRI improve - they got worse every time I had one. I know there are alot of bad things being said about Tysabri, but I love it. It has given me back 6 months of a semi-normal life. All I can say, " IS PRAISE GOD" miracles do happen.

t last long either because my doctor found legions on my spine and told me he thought tysabri would be the best option and I needed to make my decision quick. I did do my research on tysabri but I don't think I want to be on this for the rest of my life. I know the pros and cons of this infusion process still being that this is all new to me I don't want to later find out along with MS I have this blood disease. I really need to deal with one illness at a time.

Here, they make you stay overnight in the hospital for the first Gilenya and there is a follow up eye exam in 3 months, here. The Tysabri is an infusion every 28 days. It's "biggy" side effect is the possibility of a near or fatal brain infection. But they will monitor you for that. Tysabri was my first drug and if the idiot neuro in another state had been able to read an MRI, I probably wouldn't have foot drag and light sensitivity!

Well, my neuro called and left a voice mail on my cell. I wish I had heard it when it rang. Basically she left a rather long message about my blood-work. (I saw her about 2 weeks ago, and she wanted to switch me from Copaxone to either Tysabri or Gilenya. There needed and still needs to get lots of tests. They have very stringent rules who goes on these meds. She told me I was negative for the JC virus and would like to know my thoughts about this. Would I be willing to try Tysabri?

I was on beta seron for months.. Now starting tysabri.. No I don't carry jc virus. Anyone have input on this? My lesions are in brain and cervical spine is a mess with lesions. Arms n hands are awful. Have had the hugs as well. And the almighty "zapper", the elect current that runs through torso and hits you in the pelvic area. This disease is quite difficult to keep up with. Here then there then another area...

I had 2 exaccerbations while on copaxone and 3 new brain lesions in my relapse in January. We talked about Tysabri but decided to keep it in our back pocket if I need to come off gilenya for any reason. My neuro wanted to skip the interferons altogether as he said the effectiveness was about the same as copaxone and I'd likely end up in the same situation with one of them as I did with copax - OK for a year or even less and then progression starting again.

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.

Morning MsLeigh, Guitar girl is active on the forum here and is on Tysabri - my brain is not working too quick this a.m. She comes 1st to mind... May I ask how long you were on the copax? All the best to you with the switch, Leigh. Many MSers do well with tysabri I've read.

Tysabri brain infection

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