I've been feeling more tired the past few days. I checked my calendar and noticed it will be five weeks when I get my infusion on Monday. I think I really need it, lol. :)

In the morning I'll be getting an MRI of my C-spine and brain too so hopefully everything is looking extra good in there. ;)

Hey Wiz, sorry you have been dragging. Hope the MRI results are good! :)

Thanks Natalie and Polar,

I feel better today, so maybe I just overdid it last week? :confused: Oh well, I'll be glad when tomorrow is over. I checked my dates for the rest of this year and the rest of the infusions are four weeks apart. :)

Yay Polar, I'm glad it went well. :)

My MRI's were excellent, C spine included. :Dancing-Chilli::Dancing-Chilli::Dancing-Chilli::Dancing-Chilli:

The infusion went well and we got home earlier than expected. :D I was a bit tired but it was a long day and trip. I'm ready to face the next four weeks now. :D

:Wave-Hello:Hey everybody!

I've been a lil MIA lately! :confused:

I'm working too hard to get everything that needs to be done at home DONE before it gets too hot to work in the yard, working too much at my job, not sleeping enough, and getting ready to start another job in addition to everything else. I'm actually looking forward to this, since it's a job I love and I can't wait to restart it!

I had to do a bunch of recerts too so I have been averaging about 4 hours of sleep a day. I'm beat, my sleep schedule is way off and life is still good! :p

I go for # 26 today!! Yay!! :yahoo:
I plan on taking a few minutes to celebrate!

I couldn't sleep so I got up to putter and I was thinking about how it's been TWO YEARS since I started Tysabri. I've only missed one infusion and I am just so pleased with the NON progression and the NO DISABILITY that has come from this drug. What a freakin' miracle this stuff is for so many of us!

I know I wouldn't be able to do what I am doing now if it wasn't for Tysabri. All the carp before is almost just a bad memory now, the cycling through the relapses, the vision problems, the balance garbage, the cognitive malarkey, and the utter despair in knowing that I was losing me!! Having all that blackness turn to joy is amazing!

Time IS brain, my friends. I'm so glad I still have mine and that you all still have yours and that we can come here and rejoice in our triumphs and find support when it's not going so well!

Today will be a GOOD day!:Dancing-Chilli:

:grouphug:

...and it WAS a good day!

The sun was shining, it was actually hot out, the infusion went as usual.

There was NO chocolate cake...so I will have to make one for myself!

Hope everyone is doing well!!


(p.s...I found my previous post on an investors board today...)

Yay for your good day and good infusion RW. :D :hug: I agree with you about Tysabri. I feel very lucky that I can get it and that it works so well for me too. :)

yeah...so there was another case of PML reported on Biogen's gloom and doom spot today.

US patient, 24 doses.

http://phx.corporate-ir.net/External...R5cGU9Mw==&t=1

No other information is available at this time, but as you know, when more info is available we'll post it here. Keep your eyes open on other MS boards and if you find anything, post it.

The good news?...we are still 30+ cases behind that "other drug" that is used off label to treat MS that has PML associated with it, you know, the one that Biogen also sells along with Genentech, the one that doesn't have any monitoring program so they don't report every freakin' case?

Biogen has also guided that they will continue posting PML cases for Tysabri until July 24, 2009, the third anniversary of the relaunch of Tysabri, when it expects the risk/benefit profile of Tysabri to be clearer.

http://www.nasdaq.com/aspx/stock-mar...bri-ms-patient


Hope everyone is doing well! Have a good Memorial Day weekend!!

It has been quiet in here for a while - and LL, (Love of my Life), and I haven't posted in a while because everything was going so smoothly with Tysabri. We began to take it for granted that this miracle drug was THE solution without any drawbacks.

Until infusion 18.

Having never experienced any major side effects other than some minor facial flushing after the first few infusions, LL had a major reaction 45 minutes into infusion 18 in early April. She went limp, had total body spasticity and was temporarily paralyzed. The Neuro was called into the infusion center, stabbed her with an Epi-pen and then escorted her to the ER at the hospital next door. We spent the night there.

LL's Neuro said that this was the strangest reaction he had ever seen. His practice runs one of the larger infusion centers in the country and it was fortunate that he was present when LL had the reaction.

Follow up consult with the Neuro revealed that she has NOT developed antibodies to Tysabri. Since we all had been so pleased with her amazing response with Tysabri, the Neuro suggested that we try it again with pre medication - and we did - for Infusion number 19.

LL took Benadryl an hour before that infusion. The infusion center nurses administered more Benadryl and a steroid immediately prior to infusion. All went well - with little reaction other than the facial flushing again and (worse than normal) fatigue afterwards.

Her adverse reaction at 18 scared the s**t out of us but we are thrilled that she can continue with TY. Despite this scare and, until we have a cure, we still swear by Tysabri.

JJ

Now that would have scared me off of it for good. :eek: I'm glad it went well with the next infusion and I hope it continues to do so. God bless her! :hug: And you too! :hug:

Yikes!

That would have gotten the attention of everyone involved in my infusion center, along with my neuro and ME!

I'm glad to hear that everything came out well, and that she is able to continue. I hope it continues to go well and that you both will keep us updated on any further adverse reactions so we can watch out for them ourselves.

It's good for all of us to remember that you can have an adverse reaction at any time, even when you have been on a drug for a long time. I still sit quietly and assess my body and it's reaction at each infusion and I don't think infusions will ever become a "matter of fact" thing with me. It took me too long to be where I am and I am always afraid that something will happen to change the excellent results I have had.

Tell LL we're pulling for her!!

I read the last few posts and just wanted to say I'm wishing you all my best. I had #34 last week and know that Ty has given my the QOL I have been enjoying:D
I, also, need to add that I go to 2 other ms sites and really appreciate how neurotalk-ers ;) present info !!
Linda

MS patients report greater treatment satisfaction with Tysabri

http://www.eurekalert.org/pub_releas...-mpr052809.php

"MS patients reported significantly greater satisfaction with the efficacy and convenience of TYSABRI, as compared to MS treatments used previously"

:)...we could have told them that!

I had a blood test today to check for Tysabri antibodies since I've been having some infusion issues. Keep your fingers crossed. I'm sitting here biting my nails. :eek: I don't want to give my Ty. up!! #12 is coming up soon.

Saying a prayer for you, Natalie, that everything comes out FINE!!

Sending up a prayer Natalie... :hug:

Fingers crossed :hug:
Linda

Happy Anniversary Tysabri!

Three years ago today, after a LOT of hard work by MS patients, friends and believers, Tysabri was re-approved by the FDA.

On July 23, 2006, infusions were resumed.

Here we are today. :)

I am one of those people who believed and fought, who now experiences the tremendous benefit of Tysabri as a therapy to treat MS.

Have a lovely day, everyone!

:hug::hug::hug::hug::hug:

I didn't believe then... :rolleyes: I didn't fight, but I'm happy it's back too RW! :) :hug:

shoooo Wiz!

Look at all you do now! Your posts help a lot of people. People see how you are doing and what you have to say and it helps them decide. It helps them to know there are people who can answer their questions and support them, to compare symptoms and stuff that happens.

Whoohooo!!!!!! My Tysabri antibody test came back negative. Guess it was just run of the mill drug side effects. Slowing down the infusion helped. I go for #12 on Monday!

:trampoline: :Head-Spin: :yahoo:

Oh YAY Natalie!!!

That just tickles the cockles of my heart to hear that!

I truly feel for people who have trouble with infusions. Mine are such a walk in the park. I know I haven't had any antibody tests, cause I haven't had any adverse effects at all. I'm not saying they won't ever happen, but so far, so good!

Good Luck with your infusion Monday!

Happy for you :D
Linda

thanks Riverwild for whatever you had to do to get Tysabri back out. You and anyone ese that helped. I am going on number 9 in a week and a half. I feel better now that I am off the Rebif it only took a month or so to feel that diffrence. Some things from MS have lightened up after about 3 infusions and most important i hav e not had any exacerbations in almost 1 year.

I live in Cape Cod from April to Sept. I did have a problem finding a plce that would take me as aguest to do my infusions. I have to travel almost 2 hours. I did my first on last month. April was done in NJ 10 min from home. That is my only problem but fortunately i am doing well with the infusions since i take a Clariton before each ninfusion. Unlike the Benadryl they gave me the one time i had a reaction it fortunately does not make me sleepy. I made stops going back but going they made my appointment 9 30 GPS said 2 hours 4 min and people told me i might hit traffic once i got over the bridge so i lef tat 7. 1 bathroom stop and i was there in 1 hour 55min. If anyone knows the area they have me doing infusions in Dartmouth, Ma. There are 22 closer but they said no go. They happen to be very nice here.

Good luck to all
laurie f

Glad to hear things are going well Laurie!!

I used to live down in that area. That's a LONG way to go for infusions! Just coming off Cape is hard! Going back has to be worse! Do you come over the Bourne bridge?

Bleah at the traffic as it gets warmer and more people head that way!

Is it insurance that makes you go to Dartmouth?

Yes Riverwild coming over thebridge in just another month will not be easy.

No it was not an insurance isuue. Tysabri is only given in Fallmouth Plymouth Dartmouth and Boston and further locatins.. Fallmouth and Plymouth were closer but they said they do not accept guests and thats what they called me. Next closest was Dartmouth thankfully they accepted me they are fortunately easy to get to being right off the highway.

Take care
laurie f

Hi all, I had #12 today. It was at the general neurology infusion clinic and not the MS clinic infusion center (I see doctors etc. at my city's big med school). What a WORLD of difference. The nurse actually treated me like a person with feelings!! They were all so friendly. They offered to go get me and the other patient lunch!! I only had to wait 10 minutes instead of 60-90 minutes. It was quiet and unstressful. I think the last place was so horrible that it was almost traumatic to go (you've read my other posts on this). I can't believe how calm and not stressed out I am. I get to stay at the new place permanently. I'm feeling a little cruddy but nothing like before. The slower infusion is much better. Oh yeah and the new nurse said she could slow it even more if i need it--no hassle and complete support. Whoohoo! I can't tell you how happy the new place makes me!! :)

This sounds MUCH better Natalie!!

My infusion center is a general infusion center even though they call it an oncology center. They are doing way more than oncology these days. It's still VERY small and personal, and I don't think I would like a large infusion center!

I'm so glad to hear that things are getting better for you. You have fought enough and you need to relax and let Tysabri work it's magic without having to deal with problems with your infusion center every month!!

Today i recieved an emaol from Touch program telling me they are still working on finding me a site to do my infusion in in MA. Funny cause Thurs will be 3 weeks that I had m infusion in MA. I called to tell them that they gave me the place and everything else worked out. My apointment was 930 am Thurs and I got my approval call 3pm Tues. I had called them weekly till that call.

Oh well good thing I didnt wait for them would be very late.

Take care
laurie

Riverwild I am in Ptown and it is the Sagamore bridge. Been here 25 years summers.

Thanks Laurie
Strange how even after three years, MSActiveSource STILL is slow as molasses! They really need to get it together!!!!

Lucky you to be summering on the Cape! I used to go fishing at Race Point. Living so close to the Cape, we were there every day we didn't have to work, unless we were further down the south shore or RI shore.

Sagamore or Bourne, it's still a hassle to get back and forth!

Glad to hear it all went well, Polar!

Sorry to hear you are dizzy! (somehow that just looks WRONG in print!) :p
That was one of my worst problems when I relapsed.

Hope the ENT has an answer for you!

I also had my infusion on Monday. :) It went off without a hitch. I think it was my 27th? It was my two year anniversary on Tysabri, having started in June 2007. :)

I'm feeling fabulous. Though this year the heat is bothering me more than last year, but I'm taking Provigil and wonder if that has something to do with it? Everytime you add another medicine to the mix there can be changes.

We're closing our small business end of this month. It has been eight years and the time is right. I'm amazed we found a buyer. :eek: I feel like God had his hand in that and I'm very thankful.

I'm opening a new family business in August with our sons and DH is even going to help out. He's our official fleet manager, lol. I'll be working from home and I'm THRILLED about that. :D

We're all going on a much-needed vacation next month so I'll get some R&R before we get going in August.

Hey Wiz, Congrats on all fronts!! :)

Glad to hear everything is going well, Wiz! Yay for # 27!!! :yahoo:

That is wonderful news about your business selling so quickly! You've been working hard on it for a long time and after all the stress and strife, it's so nice to hear it's paying off and that you can be out from under it all! I bet you are really going to miss your co-owner's spouse, aren't you...:p

I'd post on my experience with heat and MS but I can't because it's been 50s and 60s here and rainy for weeks now! :mad:

I also had # 27, yesterday. No problems, no concerns.

I met with the neuro afterwards and he asked why I was yawning. I had to tell him I had been up since the day before at 1:00 p.m. He wanted to know if I was taking provigil to get me through it and I hadn't had any for several days. He asked me to rate my fatigue and noted it was one of my chief complaints when I first saw him. I rated it at a 6 at that moment, even after being up for so long! I finished my appointment, went grocery shopping, and stayed up until 9:30 pm last night!!! :D



He didn't have any further information yet on the newest PML case confirmed June 10th outside of US with 35 infusions done.

One report has it being a person in France, but they didn't start infusions until spring of 2007 so I don't know whether it's actually France or Germany/Sweden. Germany and Sweden started their infusions in 2006, so it would stand to reason that it was one of those countries, but it also could have been a person from France who started in one of the other two countries before Tysabri was available in France. :confused:

I do have information that says the person is doing well after PLEX/immunoabsorption treatment and mefloquine, but is at the peak time of risk of IRIS and the treatment of IRIS also requires high dose steroids, so they may be back in hospital by now. The patient was reported to be ambulatory with some left sided weakness and in rehab for that.

I'll post if I hear any more.

Hope everyone's doing well!! I'm praying for SUN! :) (this as it's pouring out yet again!)