Tysabri Information & Check In
 

Because information about Tysabri has gotten scattered, here is a place to keep it "together".

:)

We have a LOT of resources available here.

We have people who were in the trials, people who fought to get Tysabri returned to market, people who testified at the FDA hearings both about the drug and the risk monitoring program, and people who are on the drug now!!

This is the place to ask questions, get information, talk to people who are on Tysabri, and help each other out.

I've been on Tysabri since May of 2007. I had my tenth infusion today!! I have had no adverse side effects. My 6 month MRI was the best I have had since diagnosis. I've had amazing results!!

I truly believe that Tysabri is working exactly as it is supposed to work. It's reducing relapses and slowing progression of the disease. Whatever comes after that is gravy, the cherry on top, the extra doughnut in the box!

I got some gravy, too!:)

I go for my 3rd tysabri infusion next Wenesday, February 6. I had a reaction during second infusion (pain in upper back, shortness of breath, tightness in chest) so I will premedicate with benadryl. I was given benadryl in my iv when experiencing the reaction and it was resolved within 10 minutes. I actually was at the end of my infusion when I told the nurse I was having a problem so I received all of the ty.

I was wondering if anyone else has experienced anything similar. I am hoping and praying that I can tolerate tysabri and it helps.

I have noticed a bit of an increase in energy since starting.

I get my 10th infusion a week from next Monday. I'm glad you started this thread because I was going to ask a question of some of the Tysabri veterans.

My next infusion will be nearly five weeks instead of my normal four because they have such a busy schedule at my doctor's office. Has anybody noticed feeling worse or more tired when they have it a little later than normal? I wish I were having it next week instead, I feel like I need my Tysab-tini soon. ;)

I haven't missed by more than a day, so I can't help you on the length of time. I get the feeling I need more sometimes, usually around middle of the third week. I'm not sure if it's because I am doing more or what, but I would hate to miss an infusion or be late!

We'll be waiting to see how it goes with you Barb! Just don't forget to premedicate! :hug:

Tysabri user too!
 

Geez, the CRS is bad! I can't even remember who I was responding too!

I too am on Tysabri and started in February of '07. Thus I have had 12 infusions so far.

From the very first infusion I was always given two Tylenol and one Benedryl about 20 minutes before the infusion was started. You infusion center didn't do this? For some reason I though it was part of the TOUCH program protocol.

As others have stated, I have had very good results from my first year on Tysabri. I had MRI's done about 12 months ago and another set done just last month. No new lesions nor active lesions were found on the new MRI's.

My bladder frequency/urgency issues have declined by about 90% and my spastic episodes with my legs have decreased by around 95%. It is more difficult to tell if my cognitive dysfunction has improved. Also my tremor in my right hand is still just as bad.

I know that the Tysabri (and all the ABCR drugs) are designed to slow the progression of the disease and not treat the symptoms, so I am very happy to see positive results in the symptom end of things too!

Best,

Dave

I just had #9 today. I'm tired for the first couple of weeks after my infusion then feeling good a week or two before my next one. I love just going once a month rather than giving myself injections. I am a baby when it comes to needles. :)

I'm starting Ty on February 13 unless they get a cancellation. I hope someone cancels so I can get in sooner. My infusion center is at my MS neuro's office. I think they need to expand:). Wish me luck! I'm very optimistic about Ty. My hopes are high:D.

I'm gonna start posting about my infusions and keep a log going right after my first one.

Chris goes for #3 on 2/5 - no adverse reactions and in the last week I've seen a very slight improvement in his mobility.

We pray it just slows down this MonSter!!!

Good thread - thanks for starting it

My first infusion is scheduled!
 

I am going for my 1st infusion Tuesday, the 5th. I have to admit I am very nervous!! :eek: So I will be reading this thread with great interest!

I'm hoping for great results, but seems everything I try if there is a side effect I'm the one to get it!!

:grouphug:

Hi Marcia! ( Love your name, it was my mother's name too!)

My advice is to relax Tuesday and I hope things go well for you!

Your infusion center/neuro may have you premedicate with Benadryl or Claritin if you have problems during your first infusion. A lot of places have people do that automatically. Be sure to ask them what their procedure is if someone has any reactions.

Please let us know how it goes with you Tuesday! We'll be looking for you!!:)

Thank you!! "Marcia" spelled this way is uncommon it seems! Your Mom has a great name! :)All my infusion center said you will be fine...:) I will relax (or try too), am sure once I get the first one done, I'll be fine. I have this terrible habit of reading the worst that can happen, before I read the good!

Thank you again, and I will for sure check in Tuesday!

:hug:

Me, too!
 

I go for #14 a week from Monday.

I've had nothing but wonderful results.

The improvements kind of snuck up on me. I realized after 5 or so infusions that I no longer needed my afternoon nap :wink:

I'm back to working full time, my numbness and cog-fog are virtually gone. I have my life back.

My last MRI in November showed no new lesions and some of the old ones were shrinking :)

I know Ty is not designed to alleviate symptoms. But I think it has given my body the space and time it needs to begin to heal.

It's all good.

I wish the same for all of the others that have joined the "T" Party.

I go for #15 on Wednesday the 6th. I have nothing but good things to say.

I was scrupulously, even obsessively compliant with Avonex for 16 months after my diagnosis and although my MRI was stable my symptoms were not and life had become an endless cycle of exhaustion and pain with 5 rounds of IVSM in 13 months. And although I never complained about side effects and truly did not mind the shots, in retrospect I think Avonex contributed significantly to my fatigue and depression.

I have no side effects on Tysabri. It takes 3 hours every 28 days in a very pleasant, relaxing environment with nurses who are extremely competent, kind and patient despite my lousy veins. Thanks to a them, a very competent, organized neuros office, good insurance and some luck I have had no procedural SNAFUs like some people have had.

I saw significant improvement after the first infusion. But I think that is unusual and mostly because when I started Tysabri, I was still in a lingering miserable flare that had not responded to IVSM. My MRI is unchanged since diagnosis. Fatigue is still my rate limiting symptom and has forced me to "retire" from a profession I love though I still hope to work again after some re-training. But overall my fatigue is much better and easier to manage than before Tysabri. Most days I have only minimal amounts of pain on much less medication.

It's not a cure. I still have symptoms every day and believe that I am still seeing steady albeit very slow progression. But my symptoms are much better my overall quality of life is vastly improved. Although Tysabri is only supposed to decrease relapses and slow progression and MRI changes I completely agree with Karen that by quieting disease activity Tysabri gives your body time to heal itself. which it can do if there is not too much damage already accumulated.

I'm not at all worried about PML though I don't discount the very small risk.
I would recommend Tysabri to anybody who had any problems at all with any other disease modifying med.

That's my long story. ;)

Great to hear how well some of you are doing on tysabri,I will be talking to my neuro in april when I have an appointment ,this rebif is very hard to deal with anymore...

Good Luck with your neuro appointment, Mr. B!

If you need any information or talking points, just ask and someone will jump in!

Let us know how it goes!:)

Hello Everybody
 

I'm new to this group and looking forward to learning what I can -- and hopefully contributing something as well. My new bride is scheduled for her fourth Tysabri infusion next week after developing antibodies to interferon (Betaserone for a year). Do any of you know the percentage of patients who develop antibodies to Tysabri?

Thanks
JJ

Hi JJ and welcome to NeuroTalk! :)

The drug monograph lists information for antibodies under "Adverse reactions- Immunogenicity. See pages 9 and 10.

http://64.233.169.104/search?q=cache...lnk&cd=5&gl=us

Hope that helps you!

I had my 10th infusion last week. I haven't been tested for antibodies, but I haven't had any reactions to suggest that they have developed either.

How is your fiancee doing with Tysabri so far?

You mean my 'blushing bride'? (First wedding anniversary is Valentine's Day !)

Thanks for the feedback - you provided the answer to my question.

LL (Love of my Life) never displayed any 'side effects' after one year on Betaserone - but blood tests last year indicated that her body had developed neutralizing antibodies to Interferon. Betaserone wasn't slowing progression of the disease because of her antibodies to Interferon and that's why her neurologist recommended that she switch to Copaxone or Tysabri. He encouraged Tysabri because of clinical evidence indicating that Tysabri was more effective than Copaxone in moderating/controlling progression - despite the risks.

My new bride is doing well with Tysabri. She has minor side effects such as "flushing cheeks" and "severe fatigue" on the day of infusion - but she seems to (otherwise) tolerate the treatment well. She doesn't seem to recognize any significant difference since starting the treatment, but I see some improvement in her energy level. Time will tell.

We appreciate the feedback from all of you in this group. We learn more from groups like this one and from other groups than we do from all the medical journals and the doctors. Your personal experiences are helpful to us.

Health Talk (dot) com has another MS/Tysabri group that is helpful.

Until we find a cure, we hope that therapies like Tysabri will help us "stay the course."

Thanks again.
JJ

I was in the origiinal Antegren trials years ago. I have been off Tysabri for a while. I just went today to fill out all of my paperwork at the MS Centre and am going for my MRI this week. How long after you filled out the paperwork did it take you to get your first infusion?

The nurse didn't think it was going to take longer than 2 weeks before all of my paperwork would be in order. I was just wondering how long it took most of you and your insurance companies to approve it?

Thanks!:)

I was approved in 2 days and I belong to a HMO. I think that must be some kind of record. I thought it would take a couple of weeks.

Hi Chris!

It took me a bit longer than two weeks. When I went for my MRI pre-Ty, it wasn't good and the neuro insisted that I do a course of steroids ( stupid MRI). Then I was approved but they hadn't yet trained the infusion center at the hospital. Then they had to look into who was paying what for me, cause I didn't want to get hit with the post infusion shock of a huge bill! I HAD to know how much I would have to pay, if anything.

All in all I think it took a month before i got the first dose. I hear things are a lot quicker now.

Good Luck! Let us know when you start!!:hug:

My first infusion is rescheduled for Thursday!:)

Chris,

My last Avonex shot was 11-19 and I was approved last week. My insurance blamed the delay on my Neuro, my Neuro blamed it on the insurance co. yada yada yada.

I think it was a little of all and also being the holidays. The infusion nurse said it shouldn't have taken so long.

Chris was off Avonex for 6 weeks before starting Tysabri so he went straight downhill being off all meds for so long.

Went for infusion #3 yesterday - no side effects.

Maybe a very slight improvement in energy but at least not worse. Still praying for continued improvement and certainly no progression.

Dedra,

Been following you and Chris for quite a awhile now. Happy he is seeing some improvement with energy! Praying for more improvement! And no side-effects!

Keep the faith!
:hug:

Had my 3rd infusion today. All went well; no allergic reaction this time. I guess the benadryl worked. I am feeling a little tired.

Barb, I am SO glad to hear that things went well for you today!!:hug:
I was thinking about you!

I am always tired after my infusion. I can't compare it to pre-infusion, because I am always tired when I go for mine, due to working the night before! ( i am always always tired!)

Here's hoping as time goes by that things continue to look up!!

Dedra, I am happy that things are going good for Chris with his infusions. Please tell him we are rooting for him! Any improvement is better than none! I know that the increase in energy was my most favorite "side effect"

did you ever notice...? Lab rats??
 

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.

Checking In......First Infusion
 

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! :p 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!:D I am looking forward to a long relationship with Mr. Tysabri.

Hugs, :grouphug:

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

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!:hug:

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!

Want to start Tysabri ASAP...
 

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. :( :confused:

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.

:hug:

#14
 

(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 :)

Life is better
 

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. :D 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.