"Lola Falano took the drug, became a missionary, was helping people, and was back to normal. But after a few years, she was back to square 1, an was unable to walk or care for herself. Look her up and read her story."

To reply #9--

Where did you read that Lola Falana has been on Tysabri? I've been looking up her story (I read several bios)... I can't find anything on any of the treatments she's used. If you have a link, please post it...

I too am on Tysabri, I go for my 4th infusion on Wednesday. Thanks Lynn for keeping the record straight here concerning Tysabri.

To Sherizi-
After my first infusion, I had my IBS stirred up pretty bad. For the second one, I took some sucralfate before and for a few days following (along with upping my IBS med) which helped some. For the third infusion, the nurse set the infusion time for 2 hours rather than 1. That made ALL the difference. I will gladly sit that extra hour. Also... be very well hydrated, it does really help me. I snack during the infusion too.

Good luck, you will be fine, and keep us posted!

I am on Tysabri and you got some good info here. I have no side effects when i get the infusion, beats the heck out of steroid side effects. You should do fine, yes make sure you drink lots of water easier to get the iv started. This drug has helped me so much. Don't stress yourself out about starting this you should do fine, best of luck to you.
Pam

Fact:In the U.S. Tysabri was taken off the market in 2005 after three patients in clinical trials developed PML. But the drug was reapproved in 2006, FACT:According to the Boston Business Journal, the 10th Tysabri PML case occurred overseas, in a patient who had been taking the drug for 30 months. Some have begun to theorize that long-term treatment with Tysabri may increase PML risks, and according to the Business Journal, some doctors have begun having patients take a holiday from the drug. It just a THEORY and because I do not get offened, I will apology for my my input and will only print info from the Web site in the future. Lola Falano was not on Tysabri. She was on Novantrone (mitoxantrone). Have a good day.

Actually Reply #18 Biogen released in November that the PML cases were up to 27. So as an "expert" on a subject your sorely lacking with outdated information.. Not a good source of information about it, but a bulldog at being unwilling to admit it!

In sept 09, the FDA had already issued a notice of the increase of PML risk after 2 years...again your late. But still trying to portray yourself as an "expert"?

http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm107198.htm

I'm theorizing it is bitter grapes on your part, that you were already SP when TY was re-released to market, so you could not use it. So it was a chance you were not given or able to take. Its not fair you were not given that chance.

Its pretty slick how you reference someone on Novatrone as being on Tysabri and then called it the same....I speculate you have been told or you consoled yourself that Ty was just the same as novartone....so it didn't matter anyway.I'm sorry you are SP, but that does not give you the right to fear monger.

Heck of an expert.

Are you getting the idea, you have discreted in this thread?

I'm sorry you are SP and I'm sorry you feel a need to fear monger.

When the subject of this post was tips for the first infusion, from people who use Tysabri......you do have a very big desire to fear monger don't you? By interjecting a new subject into a thread.
Perhaps you should start your own thread to discuss the risk of Tysabri, as you appear obsessed about it..

Must have been something in you child hood, Reply #18 that caused that need to fear monger?

And in deference to the poster of this thread, I do want to point out that there has been absolutely no PML cases in the first year of Tysabri use for MS...absolutely none! You have enough to be concerned about with your upcoming first infusion and first month with TY. PML is not something to be anxious about now!

You have been given good advice. I had forgotten that guysgirl had asked the infusion be slowed down and that had helped...but thats not something you will need to do for the first infusion. Thats something you might learn may be helpful after the first infusion. I think guysgirl learned to do that on her 2nd or 3rd infusion? It was helpful for her.

For the first infusion...be well hydrated, take something mild to sleep the night before, and bring something to read or something else to do,during the infusion because it is boring.Unless your the type who can sleep through anything. They will let you nap if you want to.

They start by asking you question or having you fill out a sheet on you MS. My infusion nurse, just had me fill it out. Other I know are asked, about what your MS symptoms are normally and what medication you take normally?

Then they ask you the three question they will ask at every future infusion...1. Have you been given the brochure on Tysabri and have you read it? 2. Do you have any new or worsening symptoms since the last infusion? 3. Has your medications changed? I have the questions memorized obviously. She no longer asks me, I just tell her the answers before she starts taking my BP, temp, pulse..

After the form and questions,.she will take your temperature, BP and Pulse.

Then she will put the IV in. It takes an hour to run. Afterward, some infusion centers run a bag of saline. My last infusion center did not do that. My current infusion center does. The saline takes a half an hour. And fills half of the 1 hour a person is suppose to remain after the infusion. I'm at my 16th infusions with no issues, so my infusion nurse now lets me go after the saline is done. But at first I did have to wait the full hour after the infusion as is required by FDA regulations.

So that's what to expect. Get some sleep the night before! Be well hydrated. And bring something to do during the 2 hours. 1 hour for the infusion & 1 for observation.

Not the first year, as TY infusion are done every 28 days. So the first 12 infusions will be less than a year. So it is incorrect to say no PML has occurred before the first year. A few PML cases happened within the first year but not before the first 12 infusions. As is stated in the FDA notice of 9/2009.

thank you all for your tips and helpful ideas about the infusion of Tysabri! I went in today, after drinking lots of water previously. I did sleep ok the night before, as I am just truly trusting God is in this with me.
So, overall, the actual infusion went just fine. No adverse reactions at this time. So, far, so good. I am a tad tired, but, that is normal for me, and I have a little headache, but that is often a normal thing for me too. So, I will consider this still a good day, and I expect to make it a decent one!
Thank you all again, for the encouragement. That helps me, just knowing others out there understand, and have been on this path too. I appreciate you!
Sherizi

ok...now I've been home for a few hours, since the infusion...and honestly, I am feeling the drag-down fatigue now. zzzzzz...is it bed-time yet?
I guess the little extra boost of fatigue has come!
Anyhow, I am still ok with that too!
Have a good night ya'all!
Sherizi

Why are there people coming on here and telling us things we already know as well as things that aren't even true?

Yea!!!! Great job, Sherizi!!!! I'm glad all went well with your first treatment!!!!!!! YOU GO GIRL!!!!!!!!!!!!! :-)

To Bobby J.: Tysabri is for "relapsing forms" of MS, and these include RRMS (Relapsing/Remitting), PRMS (Progressive Relapsing), and SPMS (Secondary Progressive) with relapses. Tysabri can not be used to treat PPMS or SPMS without relapses as these two forms of MS are no longer in the "inflammatory stages" of the disease.

As a matter of fact, more and more neurologists that have patients who are PRMS, they will not wait to try the various ABCRs first because they need to get their patients' very active MS under control as much as possible, and limit any possible disabilities that may come from relapses.

Tomorrow I am having my 42nd Tysabri infusion, and since restarting this medication in October 2006, I have not had one single relapse nor any new lesion showing on my recent MRIs.

Good luck to all that are starting Tysabri! Happy holidays to everyone..., Lauren :)

Yeah, I might be walking into a mine field, or reviving a dead-thread. But I have to ask...I THINK I read somewhere that someone came down w/ PML after 6 infusions. Don't hold me to that, that's why Im asking. I too am scheduled for first infusion in a couple days. I'm backing out. For more than 1 reason...

I don't think my situation warrants the risk. I had exactly one relapse in about 8 years. We all know about PML. We all know there are no specific risk factors. And we all know once you got it, you're screwed. Imo, the pulse program is not there to prevent anything. It's there to cover their butts.

That being said, I consider this, for me at least, an option of last resort. I'm hope someone will correct my #'s if I'm wrong, but if I remember correctly, there are 14,000 or so ppl who have been taking Ty for 2+ years, and 27 ppl who developed PML. That's one out of 518 ppl give or take a few.
Now the stats, (again if I remember correctly), are 400,000 ppl w/ MS out of 304,000,000 in the usa, or 1/760. 2.5mil out of about 8bil or 1/3200 wordwide. Now I was lucky enough to get that, so I know 1/518 aint as small a risk as I would like.

Personally, if I were in a crowd of 518 ppl, and a sniper was in a bell tower locked and loaded with even one bullet, I would run. And that's what I'm doing. Call me a 'fraidy cat. The numbers can only go up exponentially from here. I think I will exhaust all other options before I go down that road. I want my Rebif back.

Also I THINK I read somewhere that Ty is comparable to crab drugs except for RATE of relapse alone. And, it's always an option for me. I just think I don't NEED it. Not to sound stupid, but I'd rather live with disability than, well, you know, god forbid all of us....I do know my risk of PML is 0% if I DONT take it. Please dont think me rude, just how the wheels in my head turn.

PS- I didn't mean to be rude in any way, I was just trying to say that statistics aside the only life I have is mine. And that's 1/1...

I have had over 2 yrs of treatments have not hadany side effects, some people have had some headaches just take some tylenol or somethng.
I am sure you will do fine and I hope it helps you too.

Someone did come down with PML after 6 infusions, but he was taking Tysabri for Crohns disease. He was 65 years old and had been on quite a few immune suppressants in the past, some real powerful ones. His 6 infusions were not continuous...he stopped for a while then resumed. I can't remember why he stopped?

The upshot of that is, me, one of the most critical & suspicious users of Tysabri can say with an absolute clear conscious that NO ONE has ever gotten PML with in the first 12 infusions of Tysabri when Tysabri was being used for MS. Now if I were evaluating Ty use for crohns disease I would take that 6 months into account...and even then the patient who came down with PML, I'm not at all certain he would have been allowed to start TY? Tysabri to treat Crohns disease btw, was approved by the FDA a year after Tysabri was approved to treat MS.

And in the best practices for Tysabri use, recently published in the Journal of Multiple Sclerosis, they did suggest age should be a factor in selecting which patients use Tysbari....because the immune system becomes weaker with age.

Immunosenescense is the decline of the immune system with aging and it is cited as an independent risk factor in several studies.

I posted about this, in the Ty users group....
http://www.dailystrength.org/groups/tysabri-users/discussions/messages/8566686

The person who got PML after 6 months was 65, had Crohns disease(not MS) and had a very suspicious(strong) past medication use.....


so it is pretty accurate to say no one has gotten PML from Tysabri use in the treatment of MS, before 12 infusions....which is about 11calendar months.