Karen:

I am typing this with tears in my eyes.

If I could post ten thanks for your inspiring post, I would!

Tysabri has been a godsend for me. If it wasn't for Tysabri I wouldn't be working at all! I feel blessed to be able to carry on the tedious day to day tasks and I don't care if it's cleaning the bathroom! I CAN DO IT!

I went through the health crisis and untimely death of my Dad. I couldn't even post about it, because it hurt so bad and I was so run down.

When I look back between then and now, I KNOW it's the Tysabri that brought me back to where I am now. For that I give thanks and keep pushing the good news to others.

Thank you for your thoughtful post and may your experience with Tysabri continue to give you the benefit you have now.:hug:

RW,

We've always been on the same page, I think, with our Ty experiences.

I am so very, very sorry about your dad. :hug: I don't even have the words to express my sorrrow for you.

I am so grateful that I have the strength to deal with my mom's many health challenges. Had this all happened a year ago, who knows? This woman is my hero and my best friend, and I am not near done yet learning from her.

I, also, will continue to push the good news. You and I are both excellent examples that there is light at the end of the tunnel, and that it is not a freight train!

Keep the faith,

Hello Keri,

Give the Tysabri people a call and ask them if there is a waiting period for Copaxone users before they can start Tysabri. From what I recall, the interferons required a "flushing out" period, but Copaxone, which isn't an interferon, did not.

Your doctor may not be up to date with the Tysabri protocol. I don't believe it is a requirement that you try the other ABCR drugs first before getting started on Tysabri.

Remember that in our cases with MS, knowledge is power!

Dave

Difficult to get on Tysabri?
 

Did any of you currently on Tysabri have difficulty starting the process? Just trying to assess how much of a battle I may be in store for ahead of me. I'm hoping it is smooth sailing. So far is has been easy. Blue Shield rapidly approved the MRI (same day) and the home health nurse for the IVSM and the Copaxone right away. With the tysabri I have no idea what I might be up against....not that it's gonna stop me. I imagine my roots will come out - I may have been out of NY for many years...but you know what they say - you can take the girl out NY - but the ***** never leaves her. LOL - kidding - but when it comes to my health - I will have no qualms about crossing the line between between being assertive and aggressive to get the treatment I need. In the meantime - the FDA best not be thinking bout pulling Tysabri from the market. I will be crushed.

Also, how long did it take to get started from when you told the doctor you wanted to start to when you actually did start?

thanks for the info,

~Keri

Hi Keri!

It took about a month from start to finish for me. Some people get started more quickly. Since C isn't working for you and you can't take interferons, I don't think you should have any problems.

Talk to your neuro asap to get the ball rolling.

I have high hopes for Ty. My first infusion is tomorrow, the 13th, I really think it might be great for me.

I'm a northerner and have a quite a large mouth when I need to. I've been using it alot lately LOL!

Mri's and Ty
 

Has everyone had a baseline mri before starting Ty? I've never had a T-spine mri. My neuro wrote a scrip for one a week ago and I'm still waiting for authorization from my da** insurance company.

I won't be able to have the mri until after my first infusion. It's tomorrow, the 13th.

Also, do the infusion centers have benadryl, etc. on hand in case you have a reaction?

My neuro told me that it wasn't necessary for me to premedicate unless I have a reaction to the first infusion.

Thanks ahead of time! :):)

I'd never had a spinal MRI. I hadn't had a brain MRI since Oct. 2005. I had Brain, C-spine and T-spine in April 2007 for baseline before Tysabri. That got me a course of oral steroids ( I was on my way to S.C. for my godson's graduation. Nothing like 60 pills a day when all you want to do is have fun!) I wasn't missing my plane for IVSM! It must have been a nasty picture for the doc to send me off with that huge bottle of pills!

As for having antihistamines on hand...is your infusion center at a hospital or medical center? I would hazard a guess that they would have a crash cart on hand and qualified medical personnel immediately available. I would think any infusion center would, due to the possibility of a reaction to whatever they infuse there.

I have no experience with infusions in a Dr's office. My infusion center is part of a health center/hospital. They do infusions for everyone, cancer, Crohn's, MS, etc. I can see the crash cart from my seat in my room.

I have never premedicated with anything and I have never had a reaction.

I would ask the infusion center staff what their protocol is if someone has a reaction. More than likely they will ask you if you have any questions beforehand anyway. Write your questions down beforehand so you remember them!:D

For today? TRY to relax and just take it one day at a time! More than likely things will be fine tomorrow!:hug:

We'll be looking for you tomorrow for the full report!

Hi Keri,

Getting treatment with Tysabri is a whole lot easier now than it used to be. Dr. prescribes Tysabri, you sign paperwork, paperwork is faxed to MSActiveSource, they call you and the ball is rolling.

It took a month for me, it may be faster now. ( that's not counting the wait from March 2005 to May 2007 when I was finally infused!!)

Good Luck and let us know how it goes!!!:hug:

( Don't EVEN mention FDA and pull in the same sentence!! There would be a whole LOT of crushing going on and it would be the doors at the FDA by Tysabri users!!!)

I did not have a MRI before mine. Last MRI was in the spring.

Hello Joelle,

I had previous MRI's to for comparison so I didn't get "baseline" MRI's per se. My infusion center gives me one Benedryl and two Tylenol about 15 minutes before they start the infusion, just as a matter of course.

For some reason I thought that was part of the TOUCH Program protocol. Maybe not?

I like taking Tysabri. I go to the infusion center at my local hospital, I sit in a comfortable chair in a clean modern facility with big windows. They supply drinks and things to eat and the staff are very friendly and professional. Beside that they remember who I am and what I am there fore.

Besides, sticking myself every other day was getting to be such a drag!

Happy to be on Tysabri,

Dave

Thanks RW! I'm having my infusion at the doctor's office. I will have a list of questions in hand, LOL, as usual.:)


Can't relax RW.:( Not about the Ty. My mom is waiting for biopsy results on a gigantic "mass" behind her heart (she's supposed to have them back tomorrow) and I live 1000 miles away from her.:( As soon as I get the Ty and mri stuff behind me I will be on a plane going to Pittsburgh.

I have to make sure I have the strength to handle this. I'm a tough "broad" :rolleyes:!

Whether it is cancerous or not, she has to have it removed, shrunk or something. It is in a very bad location. Lot's of pain.:(

Wish me luck! Please send some good thoughts my way.:o I really don't need to have any problems with the infusion right now.

I had my infusion #10 yesterday and it went very well. :) I didn't feel as tired afterward as I have in the past, and I worked in the morning too. But I vegged all weekend so maybe that was part of it?

Next month will be early, on March 5th. I also need to get my annual MRI done. I'm going to the facility near the neuro's office so he'll have the results when I get to his office for my appt and infusion.

Something notable: My neuro knows of another case of cancer possibly related to Tysabri. A patient that had been in the Tysabri trials was off of it for several months. He'd been complaining of feeling forgetful so went in for an MRI. They found an advanced brain tumor that was somehow related to his previous malignant melanoma. I hope it isn't related to Tysabri, but if I had a history of melanoma I'd certainly take note.

I have an appt for a baseline skin checkup on Feb 20th. My Mom had skin cancer but I think it was carcinoma. She had fairer skin than me too, FWIW.

Good luck, Joelle!!
 

Joelle -

Hope your treatment goes well on the 13th - please let us know how it goes. I'm not a "praying" person - though with my dx maybe I will become one - or maybe it will confirm my stance - but thats a :Soapbox: for another time LOL -

Anyhow - I will be thinking of you out there, somewhere, and that things go smoothly for you - and that Tysabri is the key you need to unlocking a positive future - with less pain and more hope!!

Be well!!!
~Keri

Hello all,

RW, I am not sure if they slowed it down, I was to nervous to notice!:rolleyes:

Before I say this, remember my Neuro said "All that has happened with me, well I am in the less than 5% that has a serious reaction" But of course, that would be me!

Today is first day I feel somewhat normal. My legs have been aching bad, headache came and went, I swear felt like a spinal headache. Just very achy, blah feeling and very fatigued all weekend and yesterday.

My Neuro called me today and said he definately wants me to stay on Tysabri, but my infusions will now take place at a hospital, to be close to doctors trained in anaphylactic emergencies. They are scared of how long it would take if they had to call 911:eek: Well, heck, now I am scared.


Has anyone heard of anyone doing their infusion at a hospital due to a severe reaction? My Neuro is hoping my body will adjust to the medication.

So, I guess they will overly pre-medicate me or stand there until I can't breathe??:p:rolleyes:

Trying to stay positive!
:grouphug::grouphug:

Will be thinking about you tomorrow Joelle and also keeping your Mom in my prayers. You'll be fine tomorrow and with your Mom in no time!

Sending you good thoughts and vibes,
:grouphug: :hug: :grouphug:

Joelle, good luck with everything! Even though I had my appoitntment in the neuro's office they had all of the necessary med's available if they needed it -- benadryl, epi pen, crash cart. Of course my neuro's office is connected to the hopsital by a bridge.

I am also hoping that everything turns out well for your mother.

Good Luck to you joellelee and prayers are going out for Mom!:hug:

Glad to hear you are feeling better today! Many people report the tiredness after infusion. I remember having a sore throat after my first two or three infusions.

In answer to your question about reactions, I have heard of a lot of folks having reactions with their first infusion.

In most cases the infusion was slowed, benadryl was administered, the reaction was stopped and infusion continued at a slower rate.

They were all advised to premedicate with benadryl pre infusion from that point on. Some do benadryl and Tylenol or ibuprofen. A lot of folks do Claritin so they don't have the drowsies.

In all of the cases I have heard of, the infusion was continued with a slower drip rate during following infusions.

In all cases the neuro was called and informed of the reaction, and was involved in the decision as to whether or not to continue.

I would follow my doctor's advice. Only you and your doctor can decide what to do if you continue to have problems.:hug:

All my infusions are done in the teaching hospital my neuro works out of becacuse that is where he infuses all his patients.

It seems smart to me to do your next and maybe all future infusions in a hospital because of your reaction...and probably to pre-medicate with benadryl. But I am praying that this is just a one time event for you and all your future infusions are boring but effective. :)

Tysabri infusion #1
 

I'm home! No ill effects from Tysabri!:D:D:D It's only been 3 hours since my infusion but I feel fine:).

No rash, hives, headache, anything! :partytime2:


No news about my mom yet, though. The biopsy results aren't back yet. :( I guess one more day of ignorance isn't that bad.

Joellelee!

Thanks for checking in! I was thinking about you! I am so glad to hear everything went well with your infusion!! :hug:

I know how hard it is to wait for news about a parent. I sat through it all with my Dad, biopsy, diagnosis, surgery, etc. :(

Please take the time to rest and build up you. You've got a hard road ahead. I pray that her tests come out ok.

I am here celebrating YOUR good news today!

Let us know when you hear, ok?

Hooray for your infusion!!! :) I hope you'll get good news about your Mom. It's so hard to wait! :hug:

Wonderful News!!!!!!!!!!!

There was a message on our machine when I got home from work tonight that I've been approved to start Tysabri by our insurance company.:Excited:

It was too late for me to schedule the appointment as the MS Centre where I go was already on their answering service. But, I'm going to schedule my first appointment tomorrow.

I do have a question. I was in the original Antegren studies, and when I went for my infusions, I was typically there for almost a half of a day. How long should I expect to be there for just a regular infusion? I've filled out all of the paperwork already, had all of the lab work, and my MRI, so all I need to do is register at the infusion centre and get the infusion. I'm looking for a rough estimate.

Thank you!:hug:
Chris

Yay Chrappy!:p

Glad your insurance company is coming through for you! :hug:

Three hours seems to be the average infusion time. About an hour for setup and questions, BP, temp, start IV with saline, call the pharmacist, they mix it and bring it down. Another hour to infuse, and an hour of observation after infusion to watch for reactions.

Let us know when you start!!:grouphug:

Thank you!:D I'm hoping to start sometime next week if they have time. I go to an MS Centre so they have their own infusion room. I'm hoping they will let me call them by cell when we're 10 minutes or so away so they can get everything mixed up rather than having to wait until I get there. They wouldn't mix it up until I was actually in the infusion centre the last time. I suppose they have to worry about people not showing up.

I'm so excited. I'm ready for a party!:Dancing-Chilli::Grin-Nod:

The TOUCH protocol at my infusion center is that they don't mix until you answer the 4 questions.
If you don't answer them to their satisfaction or the infusion center has a problem, the drug doesn't get mixed until whatever their concern is gets resolved, because it has a short shelf life once mixed and it's pretty darned expensive yanno!

I hate that last hour! I am itching to GO and my nurse always laughs and tells me to settle down and let her do HER job.:cool:

I had a great experience at the infuson center. The Ty nurse was wonderful! That last hour really stinks, LOL. I am so impatient that even when I get a pedicure I can't stand to just sit there to let my nails dry! My Ty nurse brought my dh and I homemade chocolate chip cookies to eat while we waited!! :D (like my butt really needs nother cookie, tehe) I also met some other Ms'ers who were really nice :). I did some networking for my son too! I met an author who works for Boca Raton magazine and he gave me a number for my son to call for a summer internship position with his recommendation!! Jesse, my oldest, really wants to be writer and he's very talented (I would say that even if I wasn't his MOM :D).

Yippie
 

WOOHOO!! I knew you would be fine! I'm so happy for you! And still have your family in my prayers, I know the waiting can be terrible.

I'm so happy your first infusion was free of side effects.

(I was feeling bad for posting what my Neuro said day before your first infusion)

Like he said I am one in less than 5%!!:p

Yippie!

Great news!

:grouphug:

Yay - Congrats!
 

Wash out from other meds?
 

This may have been addressed already - but being that I read the thread in full days ago - and memory has more holes than my brain... (sigh)...I'll ask again... (so please forgive)...

How much of a washout did you do of your previous meds before you had your first Tysabri infusion? (ie: how much time passed between your last dose of your old med before starting tysabri?) I've heard some people say 2 weeks to 30 days...

I just saw my neuro and he said we will go ahead and start the process for the Tysabri.

As of today, I am officially off of Copaxone...and my paperwork has been faxed to the TOUCH people. Next week I plan to make sure they are in contact with Blue Shield so the ball is rolling. (I guess I'm back in fighting mode. I shift from moment to moment - from feeling hopeless and wanting to wave my lil white flag to wanting to fight aggressively.)


I need to go rest - the neuro experience was exhausting.

~Keri

The FDA "suggests" 2 weeks but the only "requirement" is that you not be on Tysabri and another DMD or immune suppressive med at the same time....excluding courses of IVSM for flares which are allowed.

My neuro told me to stop my Avonex and schedule my infusion when the insurance approval came through. So my first infusion was a week after my last Avonex shot.

I have now had 16 Tysabri infusions, lots of benefit and no problems so far.

Food for Thought
 

While cleaning out my bookmarks and favorites files, I came across an article that reminded me of one of the reasons I started Tysabri. I decided to save this along with the associated scientific studies, just so I can revisit them again in a year!

http://www.neurologyreviews.com/aug0...inationMS.html

Now maybe the early scientific studies were only EAE murine models, but those darned mice were saying something and I for one am glad I listened!

Question for you all
 

Has anyone received a communication, whether by mail or email pertaining to a survey by Healthmedia about Tysabri?

Curious because it's out there and I haven't received it yet.:confused:

Hmmph...
 

Hello RW,

Nope, no such survey has turned up in my box. Did you get one?

Dave

Nope Dave! Nothing here yet!

A letter of interest
 

I received this in a letter from a former board member of the Multiple Sclerosis Center of Atlanta. I am posting it with his permission. (Edited to protect personal information)

For those of you who go to this center, you may be interested in what he got for stats there.


This is his disclaimer:

"The stats were not compiled from a format that lends itself well to publication for statistical analysis. Patient records were not set up on the computer in the same fashion that would be used in an FDA study.
The numbers were provided to me directly by the head of infusion operations at MSCA and were from his personal compilations over time and made at my request.
The numbers/statistics were discussed at a recent meeting of MSCA's Board, of which I am a recent member"


"The Multiple Sclerosis Center of Atlanta [MSCA] has the largest concentration of MS patents in the world. Currently, there are nearly 4,000 MS patients treated there. The MSCA is a non-profit treatment, research, educational and support group for MS patients, along with some other neuro work, including Alzheimer's.

Currently, the MSCA has just over 500 patients on Tysabri, more than 20% of their eligible RRMS patients. This number continues to grow steadily in both % and total numbers. The MSCA's protocol for screening patients and follow up for those goes beyond the typical MS practice in scope and detail resulting in some significant tracking of those on Tysabri.

Since the MSCA was involved with the initial Tysabri trials before {it was withdrawn from market} and was among the first few groups registered for TOUCH, it has had considerable experience with Tysabri patients who have been on the drug for 18 to 48 months.


During this time:

-NO PATIENT HAS HAD A DECLINE IN THEIR MS CONDITION

-1/3rd of the patients have remained stable

-2/3rds of the patients have had a MATERIAL improvement in their symptoms, including improved mobility, balance, vision, energy and cognitive function.

-The virtual elimination of new lesions AND substantial eradication of existing lesions has been consistent with the growing evidence of symptomatic improvements

-Only a few [less than 6] have had allergic or other reactions which resulted in their dropping out of Tysabri treatment and several have dropped treatment due to copay difficulties."

I will continue to provide information as I receive it.

Good Luck Everyone!

Just received the survey in my e-mail box today. Short but comprehensive. A little confusing in the way the questions were worded and choosing the appropriate answer (on a sliding scale from Srongly disagree to Strongly Agree).

Worried about BCBS of NC coverage
 

I just read on another board that a member is having a problem with BCBS.
If they do pay how much will I have to pay. I have advantage private policy, 2500.00 ded., 10,35,50. and 50% on brand name drugs. office visit 15,30. I can't afford 1/2 of the cost on this drug. I'll be having infusion at a neuro office. Any help is appreciated. Thanks Sheena