Thanks! my only problem is that they never even spoke to me about the program, jsut said they wanted to start me on it. i was disappointed i am still waiting on any treatment besides gabapentin. i'm worried i wont get any better (i currently use a walker but can walk without it through the house- sometimes). i got an "infusion blanket" in the mail the other day but other than that havent heard anything. someone from the clinic called me on thursday, but only asked me to call, then didnt answer or return my call...................... frustrating!

EddieF, sorry you are not doing well on Tysabri

Wishing you well,
Linda

This is quite interesting--2 experimental drugs in PHASE II trials have been used to successfully eradicate PML in 4 weeks tops. I don't know if this also prevents the patient from getting IRIS after the virus is removed.

Someone in my MS clinic got PML and my neuro told me they flew in experimental drugs to treat the patient. I wonder if it was this?

http://www.medicalnewstoday.com/articles/209637.php

Fri I had my 51st infusion; went the same as the 50 before it

Before my infusion I had an appt with my neuro to get the MRI and MRV results. The MRI was normal (glad something is normal about me ). The BEST news was my MRI. Since MRI 7 months after starting Ty I have had no new or active lesions and some of the old were getting smaller. This one no new or active lesions and almost all the old are gone My husband looked at the one before Ty; scared the you know what out of him-so many lesions and lit up like a Christmas tree. He was thrilled to see this one! YAY!

Linda

WOW!!!! Congrats on the good news. Some of the lesions are disappearing? That is amazing... At what infusion number did the neuro notice the shrinking lesions? I'm so happy for you--it really makes you wanna stay on this drug. . Like you I have had no new or enhancing lesions after 24 infusions. I go for 25 in two weeks. I was thinking of dropping Ty but I'm undecided. The Gilenya long term damage side effects (lung, heart, eyes) has me slightly concerned. I do love my Ty. Anyhow, happy MRI and holidays!

YAY Linda!
It was absolutely the best thing I ever read when I read my MRI report the first time it said "no new lesions, no enhancing lesions, some previously noted lesions no longer visible, large enhancing lesions previously noted have reduced in size"!!

MRIs that followed continued to be better, bu it was that first one that still gets me going!
Funny how we love watching the lights go out!

Your doctor should have explained it to you in detail, but I guess some docs just don't do that. It's not right that a doctor would expect you to just take what they tell you to without explanation! Ask questions and take notes when you go to your doc. Call if you need more information. You pay them and they should give you the service you need. Be proactive!

The clinic or infusion center should have returned your call, but I am willing to bet that they called you to schedule you for infusion and that the process is further ahead than you think. Call them back if they haven't called you back. Be proactive.

As for Biogen (the pharma that distributes Tysabri) they should have contacted you by now with the name of your case worker (or whatever they call it now).

When I was waiting to start, they called after a month and gave me the old "welcome to Tysabri" speech and I lost it, because they were supposed to investigate costs for me, give me the start date after my infusion center had been trained, etc and I hadn't heard from them at all. They didn't have it together way back at the start. I hadn't been scheduled, hadn't found out what the cost would be, etc etc etc. but that was long ago, after Tysabri restarted and they had to get their program in place.

What you need to know is that all they do now is ensure the infusion center is trained and approved, make sure that you are registered and make sure the drug is there for you. and I bet that is already done, since the infusion center more than likely has patients already on Tysabri.

My advice is to go to www.Tysabri.com and register. There's a lot of info available there for new patients that may answer questions you may have. There's a good support system in place there now. Some people don't need it after awhile and some do and it is there if you need it.

One thing you said struck me. You are afraid you won't get any better. What are your expectations with this drug? It's important to understand that Tysabri is not a cure. It's designed to slow the progression of the disease and reduce the frequency of relapses. It doesn't cure you. You will still have MS and anything else you get out of it besides what it is designed to do is gravy.

Some folks have amazing results. Some folks just stabilize. In my case, the disease process has stabilized and I have seen improvement. I still have some spasticity and I still have fatigue but I treat those symptoms with other medications and I can live with that. My primary symptoms were vision and cognitive stuff and the problems that go along with that, and those are back to pre-diagnosis levels, but I would have been happy just having the serial relapses stop. I was having relapses every three months or so and my MRIs went from 4 lesions to "uncountable" in a very short period of time, and that has stopped too.

For some, it doesn't work at all, they develop antibodies and have to go off it. It's like the rest of the MS drugs, they either work for you or they don't, and you try something else.

Let us know how it goes for you!

Hi Barb!
The protocol seems to be different depending on your infusion center.

My infusion center sticks to what they were trained to do. They start the infusion with a 1000ml bag of normal saline solution and ask the questions required by the registry program, and call for the pharmacy to bring up the bag of Ty/saline mixture. It's not mixed until the verification is all done.

While waiting the infusion center does vitals, verifies the order is in place and when the bag comes, they hang the Tysabri bag and hook it into the line and shut off the saline and start the Tysabri bag. They set the infusion pump for an hour and I sit there until the hour is up and the bag is gone. They check my vitals again during the infusion. Then they restart the saline, reset the pump and I sit there for another hour.

They do another vitals check and I sign the paper and I am OTD. I finish the bag of saline in the time before and after the infusion of Tysabri. They refuse to let me leave early, even after 46 infusions. They've let me go down the hall to my doctor's office but that's it. I have to check back with them when I am done with the doc so they can verify I am not dead yet or having any reaction. In one way, it's reassuring to know that they will do it the same every time, in another way, it's irritating to have to sit for an hour after I am done because I want to GO!

Good find Natalie!

Let's hope that this turns out to be a viable solution and doesn't have some strange side effect that is worse than the cure!

I have #12 on Friday.....saw my Neurologist today to review my MRI results. Great News! I have zero new or active lesions! December 2009 my scan showed over two dozen new lesions! Prior to 2010, each of my scans have showed dozens of new and active lesions, so this is just amazing!