Calling all Tysabri Users...

[HRWeenie]

Just piling on to concur with the others who have had Tysabri infusions - I just had my first infusion 2 days ago. Took about an hour & another hour for observation. I had a very slight headache afterwards - but I honestly think it was due to the fact that I had to drive over 2 hours to and from the infusion center on icy roads. White knuckles = headache. No other side effects. Ate a protein bar during the infusion & gabbed with a friend to pass the time. Very uneventful & drove 2 hours home afterward by myself. I was the first person to receive Tysabri at a busy MS Clinic. They told me that I was more apt to have a reaction or side effects after the first few treatments because my body may have manufactured anti-bodies. But I was also told that such side effects have been rare.

Yesterday & today I haven't seen much of a change in my symptoms - but I'm newly diagnosed & started remitting pretty quickly with no drugs. Dragged a leg for 2 weeks in November & have steadily improved since then. Now only have occasional numbness on abdomen, burning feet, tired at end of day & "tired" legs. Would be thrilled to dump the last vestiges of symptoms, but I'm not really expecting that. I did notice that I have a lot more energy today & co-workers have said I've been "perky." I think I'm just relieved to have started treatment, but maybe the drug has helped my fatigue. We'll see if it lasts.

Insurance covered the whole shabang - no co-pay because it was considered a medical treatment, not a pharmaceutical. My doctor will do a follow-up MRI (not sure when) & bloodwork -- but he is a researcher so I don't know if this is typical. He also did a disability analysis before I started treatment.

[Mulcher]

Well I 'm on Copaxone and asked my Neuro yesterday his thoughts on Tysabri, he said he is waiting to see how others do first before he prescibes it.

[Dadio]

Annie, I was also diagnosed PPMS without having the relapsing/remitting experience. I wish thry would have asked more questions concerning my health history, because there may have an R/R period that did not bother mie enough to seek treatment. Anyway, I am on Avonex one year now and have been very stable, i.e. no new disabilities. I recieved a call from my neurologist informing me he thought I was a good candidate for Tysabri. I hope that means my HMO will approve me.
take care,
Dadio

[Mulcher]

What is an infusion, is it an IV drip? Can someone describe it in details?

Many thanks!

[faithful]

I'm new to this site & forum, but I had my 1st Tysabri infusion on Dec. 28 and will have my next one in 2 days (Jan. 28). I've been dx'd since 1997 and am now secondary progressive/worsening RR. I've tried Copaxone, Rebif and 6 doses of Novantrone with little slowing of the progression EXCEPT on MRI (my MRI's are very pretty--no new lesions and the existing ones have faded since the Novantrone). Clinically, however, it's another story. In 7 years I've gone from walking normally to using first a cane, then I aded first one brace and then 2 braces. I use a wheelchair (power) for distances longer than about 20 ft., but use a walker for just around the house or office. I still work fulltime as a secretary, but I do not drive and have had to give up many activities which I have previously enjoyed including cooking, sewing. So I am interested in a slowing of the progression of this MS freight train. My health insurance company said they would initially pay for 3 doses and then my doctor and I would see what comes next. After my 1st dose of Tysabri I noticed 4 different times in the 2 weeks following infusion that I was able to walk a bit better. Not dramatic but better than nothing. I will report back after my next infusion.

[ramairdad]

I've had MS for over 17 years(since I was diagnosed) and my neuro thinks the tysabri may help me because it helps with the swelling of plaques that I alreay have. I'm basically unable to walk without a walker, and barely then.

[faithful]

I had my 2nd infusion today and so far I feel perkier than after the 1st. I think this is partly because it only took 1 stick to put the IV in compared with 6 tries last time (ouch). Also I proactively took 2 advil before I got the headache and that worked well. Plus I put all the prayer warriors I could think of on alert to pray for me.

[newday]

Thanks to Faithful for sharing his/her experiences with Tysabri. As we navigate this new territory it is helpful to hear of others experiences. I am unsure about whether Tysabri is the right choice for me but I do appreciate reading about others as I try to make an informed decision. Good luck and please continue to share your experiences. It helps others!

[Arron]

This has been EXTREMELY useful information-- thank you for sharing and please keep the reports coming!

[MichelleMM]

HI,
I have come across a survey/study being done with anyone who has received at least one dose of Tysabri. I am participating. If anyone is interested, pm me and I will give you all of the details. Thanks.

[HomeIVProvider]

What is an infusion, is it an IV drip? Can someone describe it in details?

Many thanks!

Infusion = anything given thru the vein over a period of time, yes a fancy way to say IV drip

Any questions just ask!!!

[MichelleMM]

Hey everyone,
I'm scheduled at 8 am tomorrow to have my second tysabri infusion. I am hopeful and yet a little scared. I've read that if there is to be any reaction, it mostly occurs with the second dose. Although I had nothing similiar to an allergic reaction the first time...I always seem to worry about something. My husband says I read too much !
Anyway, I'll let you know how it goes. Wish me luck ! Michelle

[Arron]

good luck Michelle, we'll be thinking about you. Please keep us posted.

[LindaNY]

Dear All, I will be having my first Tysabri infusion next week. I will keep you posted.

Love and God bless
Linda

[batpere]

Hi y'all - I was excited after getting it approved but then started getting nervous yesterday. Rushed to the appointment but got there right on time and sat around for awhile. The nurse said my blood pressure was high, perhaps because I was nervous. She got it in painlessly on the first poke (pulling the tape off afterwards hurt a LOT more) and we had a pleasant conversation. She confirmed that it usually isn't the first time but the second when reactions are seen, which was good to hear THIS TIME. Just a slight headache afterwards and achiness later in the evening, and not a mark on my arm. It took 4 hours - 1/2 hour travel each way and 3 hours at the infusion center - a big chunk out of the work day.

Then when I got home in the evening, there was a letter from the insurance about the preapproval which said my provider was not in the network and I would save money by staying in network. Good thing they weren't taking my blood pressure right then! Fortunately I was able to get through within minutes to the insurance (they are two time zones later and were not closed yet), who looked everything up on the computer and said the letter was sent by mistake - everything was in-network and would be fully covered. ($1400 out-of-pocket difference) Here's hoping I'll notice the improvements other are seeing...