Hello everybody,

I read back through the Tysabri thread posts and it appears to me that most of the improvements seen after staring Tysabri kind of crept up on us until we suddenly realized that this or that symptom was longer ruling our lives (me included)!

Although most of us know that Tysabri is about lessening the progress of the disease and not about lessening our symptoms, it does appear that a good many of us have had good MRI's since treatment began and a reduction in symptoms too.

We are the pioneers in Tysabri medical history. The manufacturers do not have any data beyond two years of use for any patients (if my data is correct). So this makes us the Tysabri lab rats!

As long as we Tysabri lab rats post at least once a month about any new symptoms appearing or old symptoms disappearing and updates on what MRI's show, then we can all be the best educated people about the use of Tysabri for people with MS.

pretty exciting,

Dave

I agree Dave - let's all keep each other posted.

Chris has said that his fingertips feel like they are asleep lately, which is new, but his feet arent' tingling anymore and he doesn't feel the pain he use to in his muscles.

Hello Tysabri Pals,

Had my first infusion today. As soon as the Tysabri was placed in my IV, I felt like I had just been infused with poisen ivy! Was so bad, I had to get the guy next to me to scratch my back LOL . Benedryl took most of that away, then as I was sitting there, I felt like my chest was getting extremely heavy and I started this cough. The nurse ran and got the doctor and turns out I had a mild anaphylactic reaction.

I carry an Epi-Pen with me, so when I heard anaphylactic, I said OH WAIT, I have my Epi. Then as I reached in my purse, I didnt have it! But more Benedryl seemed to help and I in no way feel it was a bad reaction, due to almost dying with a bee sting and knowing what a true anaphylactic emergency feels like.

They will be calling my Neuro tho and seeing what he thinks. I said NO, I want to continue, I can pre-medicate! The actual infusion was a breeze, got my vein on the 2nd try and just felt very cold going in. I was being overly stressed for no reason.

I told the nurse and the Neuro there that I will not go back to a interferon, so I really need to give this a try. I think it will go fine. I hope my Neuro will let me continue. Just like with Avonex, we learn as we go when we first start as to what we need to premedicate. Altho, anaphylactic I know is nothing to mess with.

The Neuro there was so nice, they had to wait for me to leave since I had to stay longer and he sat and talked to me for quite awhile. He said he was on call tonight and if I had any more problems at all to call him. I had a huge headache, but took a Fiorcet and it's alot better.

Sorry, so long but all excited even with the reactions! I am looking forward to a long relationship with Mr. Tysabri.

Hugs,

Well Good Grief! Now y'all are making me feel like I am an anomaly with no infusion reaction.

I am sorry to hear it got a little scary for you. I am glad you went in armed with information and that the benadryl worked for you.

I know some folks who take Claritin before infusion if they have to drive home, due to benadryl's side effect of drowsiness, but they report that it seems to stave off the reaction. That may be an option for you if you drive yourself to infusion.

Did they slow down the infusion when it happened? Just curious cause I heard a lot of infusion centers do that too, rather than stopping it completely. You may have better luck if you do the infusion at a slower rate than normal.

Hopefully, some of the Tysabri users from the other board will hop in here if they are reading and let you know what their experience with this happening is and what was done in their case as to procedure.

Glad you made it through it! Keep us posted!

Pssst...Dedra!

Tell Chris, that's the gravy part! When you start noticing the incremental things happening! I didn't trust mine until they continued!

YAY!! Your news is GOOD news!

Hi,

I'm new here - both to MS, being sick, and to these boards (this is my first post).

I was dx with MS on January 4th. I went to a neurologist b/c I thought I had a pinched nerve in my face/jaw area, as the right side of my face had become numb over Xmas - and my dental specialist ruled out that it wasn't anything related to my TMJ problems. I had felt dizzy and had some brief vision problems a few days before I saw neurologist. I seriously had NO idea that I was *very* sick. Neuro said he thought I had a stroke (shocking news since I was just a few weeks shy of my 32nd birthday!). He rushed me for MRI - I told him he needed to get back to me that day - b/c if he left for the weekend without letting me know what was happening, I'd hunt him down...

Well, I guess I put us both in a crappy position - b/c come that afternoon - which was a Friday - the neuro called and said "It wasn't a stroke" - to which I took a deep breath - and then he said "you have MS" - to which I replied "what?" - and then he proceeded to talk for 12 minutes and I was completely out of my body (I checked the timer on phone when I hung up). I think it was the longest weekend of my life.

Within 48 hours of the diagnosis - I could had complete double vision and couldn't stand up straight, let alone walk b/c I was so dizzy. Everything started moving so fast - nurses to my house giving me IV steroids for 6 days...then oral steroids...then immediately started Copaxone. Doctors will not put me on any of the interferons as I have a terrible history of depression....and he told me from the start that I need to be on Tysabri, but that I needed to try Copaxone first.

Backing up a bit - crazy about it all - since I know so many people have spent years trying to get a positive dx here.....for me - there was a big glaring neon sign on my MRI that says "MS - dont miss me - i'm here" - i have multiple lesions - many active at the moment - as well as many black holes and grey/white spots. Several lesions are greater than 1cm in size...and I have something called "dawson's fingers" which are a hallmark of MS. I saw the MRI on the puter screen - and I still have nightmares from it. The neurologists I have seen have said that the MS was hidden for a while but now it is coming on strong and aggressive and it isn't being shy anymore.

As of Monday, it will be 30 days on Copaxone...and as I confirmed my delivery of the next box of the shots - I realized how badly I want on Tysabri - and is this a waste of time - b/c I know I need to be clean from Copax before starting. When I last saw neuro he said we should wait 3 months before starting Tysabri. I think that is b/c it is hard to get approved or whatever unless you fail the other meds. So I said - well what if I lied and said I had a bad reaction - and he said he couldn't lie...but he couldn't stop me. Meanwhile, two days later, i started having reactions to the darn shots.

The symptoms from the flare-up lessened quite a bit with the IV treatment - but that was 3 weeks ago - and in the last week - they have started coming back stronger - though not nearly as bad as they originally were. I have never gotten any feeling back in the right side of my face/head. Neuro said the steroids take time to work and that an exacerbation can take 2 months to go away.... I've been in this one, I guess, since Dec 22 (when the numbness started).

I'm sorry - I just realized how long this is - I think the shock of it all is wearing off - and I'm beginning to freak out. I had to go get a shower chair and walker this week I sleep a lot - though I take something for the fatigue (provigil - though it doesnt do enough even at 400mg a day). I feel like a piece of dead wood most days. I hate having these limitations - like if I do one errand a day - then I'm toast. My brain shuts down and I can't function anymore.

I guess the point of this is - why am I waiting to start Tysabri? I'm so NOT afraid of the risks - and I know it isn't a miracle cure - but the docs gave me such a bleak prognosis - I want to start this now and get going. I know copaxone is probably not strong enough for what I need - and I can't risk the interferon treatments. Should I start pushing my neuro to get me on Tysabri now and not wait the three months?

I'm feeling like a wreck. I feel the depression creeping in - I don't know if I'm strong enough to fight this all....

Glad these boards are here....and I certainly hope someone read this.... (sorry so long)

Thanks,

~Keri

Yikes Keri!

Your story sounds like mine, in where the flashing sign sits there and yells "I'M HERE!!"

I too had the sudden onset of symptoms, and within a month my neuro started talking about Tysabri. I was scheduled for my first infusion March of '05. Two weeks before my infusion, Tysabri was withdrawn from market.

I started Copaxone in March '05 and remained on it until Dec. 06. Tysabri was returned to market in June '06. I had serial relapses and ongoing damage. Within that time my neuro had moved and Tysabri returned to market. It took me months to find another neuro and get the prescription for Tysabri.

I started Tysabri in May of '07. To date I have had NO relapses, my MRI shows no new lesions, no enhancing lesions, several large lesions "12-14mm" have either greatly reduced or disappeared. My annual vision tests were extensive and thorough. No damage now shows anywhere on my optic nerve, a scotoma( blind spot) I had on my R eye is gone, my eye muscles are under MY control, all my colors are normal and my 2003 prescription for slight nearsightedness remains in effect with NO changes.( I couldn't see well with those glasses for a year!)


In my case, if I'd had the Tysabri from the start I would have more than likely never had to go through the hell I went through until I was infused.

I'll take the 72% of patients who remained relapse free for two years, the 83% of patients who remained disease free for two years, the 67% reduction in EDSS progression after two years, the 10:1 ratio of Lesions placebo/Tysabri after two years, etc etc etc.

Time is Brain. Your body, your choice. Your disease, your choice.

Whatever you choose, we are here to support your choice.

(I had typed this all in this morning and it never posted. I think I may have hit preview instead of post! Good grief...)

Anyway, I went for #14 on Thursday.

This morning's post was very intro-spective and soul-baring. Pretty good for 6 am and 1 cup of coffee. I wish I could remember all of what I said.

All I can say is that Tysabri is a blessing in my life. You know the saying of things happening for a reason? That's Tysabri for me.

Last year at this time I couldn't make it through a day with out a nap, sometimes 2. I couldn't manage to work any more than 3 days a week, 5 hours a day. I always used the HC parking spaces. Walking further than a few hundred yards was out of the question. Anything "extra" in my life, like going out to dinner, special events, etc took extra planning. And even then, I usually bailed at the last minute.

Then a gentle sunrise happened. A very slow but distinct lessening of my symptoms.

And in the span of the last 3 months the following has happened: We decided to move my parents from their apartment over an hour away from my home into assisted living 10 minutes away. Then mom was diagnosed with lung cancer. We got them moved here the week before Christmas. The rounds of doctors appointments began. During pre-surgery testing they found a 90% blockage in a coronary artery. Mom had open heart surgery 2 1/2 weeks ago. She went to a rehab facility 6 days later, but was readmitted to the hospital yesterday for an infection and fluid build-up in her lungs. Through all of this my dad has been a mess as this is the first time they have ever been apart for this length of time. I have been at my mom's side every step of the way while trying to reassure my dad.

And mixed in with all of that my company was sold to a new owner and one of my key employees quit. Consequently I am back to working 5 days a week, generally over 40 hours.

If any of this had happened a year ago I never would have had the strength or energy to care for my mom let alone deal with any of the 'extras'.

My Tysabri is heaven sent...exactly what I needed, when I needed it.

Thanks for listening

I'm so happy to see this thread and to see so many people doing well on Tysabri! I have had six doses of Tysabri and I am only just now realizing how sick I was by comparing the past six years to the way I feel now. I'm working full time again, running the faimly business. I feel great to be taking on new challenges.

I want to thank big pharmaceutical companies and their pursuit of profit for my return to health. I also want to thank people who spend years in laboratories pursuing novel ideas. So few of them ever bear fruit.

I'm not running at the same speed I would be if I didn't have MS. I still have some pain, and fatigue, but it's nothing to the fatigue I felt before.

My biggest fear now is that they will pull this drug off the market again.

Katty

I get number 10 on Monday. I feel strong, but still very tired. I'm five days past due for my infusion so I'm hoping for a big burst of energy next week sometime. I need to get the house cleaned.

I'll report back here if there's any news other than a ho-hum infusion.