Tysabri Questions

[lukeduke]

Well here I am again. I was diagnosed with MS December 2006. I have been on Rebif since March 2007. According to my neuro at my last appointment he said on my last MRI that there are lots of new plaques. He is saying the Rebif is no longer working for me. My Step-mother is pushing me to go to Tysabri. If it is as good as they say I would love to try it. I am not sure if my insurance covers it though. I was wanting to ask about side effects. Does Tysabri cause insomnia or drowsiness? What are the other side effects? I saw about having to get your liver checked. I am ok with that one. I have to do it with the Rebif. I just want to know what you say about it. I will be honest. The Tysabri scares me but I have prayed about it and as long as I am JC- I will try the Tysabri as long as we can get it covered. Just let me know what you think.

[ru4cats]

I will have my 30th infusion on the 19th, and I have never regretted one day my decision to choose Ty. I am JC-, and have never had a side effect: none, nada, zilch! One little stick once a month, two hours of relaxation, and I'm good to go for another 28 days. My MRI's are stable, and my only sx is still right leg weakness which is slowly progressing. However, it is doable, and I continue to work at slowing the progression through exercise. I wouldn't hesitate to choose Ty.

[dalechilders51]

Tysabri

Welcome back Lukeduke. I've been on Tysabri for over 5 years. I've experienced minimal side effects except some fatigue the day after the infusion. The positive for me is that signicantly slowed my prgression when none of the meds did. For this reason i will stay on it until something better comes along. Just my experience, hope all goes well for you. Dale

[lindaincolorado]

I am/will be forever grateful to the ms neuro who put me on Tysabri 10/2006 and to the med itself
Progression halted, MRIs stable and many lesions smaller or gone and some sx abated . My sx reared up 9 years ago(I was dx in 1988) if I could've been on Ty then, I believe I would be going on long walks and dancing as it's my R leg that drags

Good luck

[REG53]

Hello lukeduke,

I am another one that loves ty, I just had #69 and my only side affects have been a headache the first time and feeling tired the day of. I started taking 2 tylenol and 1 benedryl 1 hr. before infusion. Now I am tired and a little sleepy the day of.

To my dismay, I am jcv+ and I am waiting for BG-12.

[Mynamegoeshere1]

Hello

Hello lukeduke

I am jcv- and just had my 2nd infusion today. I wish I was one without side effects, but if there is a strange side effect to be found for a medication, I will find it! That is just the way my body works. I get horrible headaches the day of, and extreme fatigue that lasts all month. The neuro is trying to find a medication to help keep me awake though. I even slept through my own birthday party thursday. I can stay up only a few hours and then have to go to sleep. At night I am extremely tired and sometimes I get a migraine (common for me) and cannot fall asleep so have to take an ambien to even go to sleep. Just thought I would let you know that random side effects can happen.

The good news is that I have met tons of people on Tysabri and all of them LOVE it with minimal to no side effects! They say they wish they would have found it sooner! I also use the assistance program and pay only $10 each month for my infusions. Can't beat that. I am hoping my body eventually gets used to the Tysabri.

[22cyclist]

Hi LukeDuke:
My only side effect is not sleeping. I too take ambien CR. But still wake up at 2:00 am each morning. It is like being on steroids. NOT SLEEPY! Oh well, could be worse!
It does different things to everyone, but by far this is the best DMD I have been on in terms of side effects. It basically has none. Mild headache, nothing to scream about.

I love it.

[rickalex2]

I have been on Tysabri for over 4 years and I have no side effects and have only gotten better with my MS. I usually don't plan on doing much the day of so I can come home and sleep for awhile and as the years go on, its not really even necessary to do that anymore. I do always fear the chances of a "brain infection" especially since i've been on it this long, but I will keep going with it until something better comes along! Good luck!!

[lukeduke]

I want to thank all of you for your input. It makes the decision I am probably going to make much easier. We will have to see what the new Dr. says. From what I've heard about him he is a stickler for the Tysabri though. And the place I am going to is a research hospital so I have to watch and make sure he is not going to get paid or anything like that for putting me on that medicine.

[goonasi]

J C Virus blood results to high risk!

Hi
Recently had a bad relapse after having a MRI scan it showed new lesions and many plaques, my Neuro suggested going on Tysabri. After the information was given I agreed to have the treatment. In order for this to start I had a blood screening for the JCVirus which came back positive. My neuro has now declined any treatment because my levels are too high!
I am not aware what my levels are so I am asking if anybody on this forum knows of the range of levels which are considered safe to high risk? I would like to go in armed with this information as I have an appointment with my neuro next week.
I am also on 3mg LDN, obviously I will stop this if I start Tysabri but would this fall into the 3 risk factors of immunosuppressants?
Many thanks in advance.
Simon

[LL60]

Simon,
I am so sorry your MRI is showing progression. Tysabri is a good drug. I have been on it for over 3 years (42 infusions) and I have found it hard to find good information. Investment sites are a good souce. My doctor is not a good souce.

The JCV test is not a straight black and white positive or negative. Not having my test results in my hand, I will ask for them at my visit next month, I can't tell you numbers. I am positive. I was just tested.

For someone who is positive and has had prior use of immunosuppressive drugs your risk of getting PNL is 1:625 if you start Tysabri. After 24 months your risk goes up to 1:90.
My risk is 1:217 no having ever had any immunosuppressive drugs before. Tysabri is a great drug for me and I feel at this time that the risk is worth it.

I got these facts from the web site investorvillage.com.

Good luck to you. I find dealing with doctors more stressful than having MS.

[moolk]

I just had my 5th infusion last night. I did have headaches after my first 2 infusions. My first infusion was a little scary....I was so afraid of the side effects and being JCV positive. I now am so thankful for Ty. I feel "normal" almost every day.
It was my choice to go on Tysabri being JCV positive and I am soooooo glad that I did!!! I am working full time and keeping up with all of my son's activities. I do get tired....but for many of us with MS, that's just part of it no matter what treatment we use.
I really hope you have a positive experience. I've yet to find one person at my infusion center that regrets the decision on being on Ty.

Best of luck to you and my you find what works!

[Myoak]

Hi Simon,

The 3 factors included for assessing PML risk are
1. JCV antibody positive or negative
2. # of Tysabri infusions
3. Prior use of immunosuppressants.

LDN is an immunomodulator. If you are JCV+ it appears you have one risk factor for developing PML. According to a hypothetical risk stratification tool generated by Biogen Idec, a person who is JCV antibody positive, who does not have prior immunosuppressant use, and has received Tysabri less than 2 years, has a relative PML risk of 1 in 1,786. If someone is JCV+ and has prior immunosuppressant use, the risk of PML is 1 in 625, just as LL60 said, if they have been on Tysabri less than 2 years.

At this point in time there is little public info available which might answer your question on what level or amount of JCV is safe or what level might be considered high risk. If Biogen knows anything they haven’t said anything. Possibly, there isn’t enough clarity in the data they have collected to answer your very, very good question. Remember, the JCV test is quite new. For now, all we normally get is JCV antibody + or – .

Simon, I haven’t heard of a neuro declining treatment because of a “too high” level of JCV. More likely, your neuro is responding to the finding of JCV antibody + rather than a high or low level. But I could very well be wrong!!!!!! Your doctor will be able to advise you best by far. He or she is the expert in these matters.

Let us know how things turn out, I'm sure things will become clear enough that you and your doctor will be able to make the best possible treatment decisions. Best to ya!

[goonasi]

Hi LL60, moolk & myoak
Thank you so much for your great informative replies. I now feel safer knowing that LDN is not in the 3 risk factors being an neuroimmunomodulator not an immunosuppresant (damn these big words on a Monday!)
Interesting to know that all the JCV blood screening results are a black/white decision being + or - not taking into account levels being high or low as quoted by my neuro!

I have my next appointment with my neuro Tues (06-11-12) and will go armed with this info also with what I have collected from internet. No doubt I will stumble across another barrier as he refused treatment with Rebif after the rejection for Tysabri as I could not walk 100yards. Not sure why he recommends something then takes it away.

Keep well, Simon.

[goonasi]

Starting Tysabri

Hi, thank you once again for all you support.

I saw my neuro yesterday and was granted, at long last onto a Tysabri program starting in a fortnights time. Gotta have my bloods checked next week, all being well, I should be starting my first infusion the following week. Now getting nervous & worried but excited that something is being done to help my MS as I believe LDN did not work for me.

I’ll keep you all posted & keep well.
Simon x