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Tuesday, December 29, 2009

MS related: Stuart's first (Tysabri) Infusion Update - Almost two full weeks later

Stuart's first (Tysabri) Infusion Update - Almost two full weeks later - today is December 29, 2009

This is being written after the first two blog posts of my first infusion (links found below) - Read the Comments that followed each of my writings from others who knew just how to answer me.

What was I to expect? Well I really at first, expected nothing and just hoped for better. Better than how I was feeling.
After my ZING of energy began the evening after the day of the infusion, I was filled with incredible energy and the need ( not just the want) to do things.
To get things started and accomplished.
Nothing was holding me back.
There was no fatigue.

I was truly inspired. Had not felt this zest "to do" in quite some time.
Even my cane has remained in the car and although had pain while walking, I did not need it for balance (which was my biggest reason for the need of a cane).

Two days ago, I remembered that I had MS. My balance again became an issue. Maybe I had over-done things this last week plus? I mentioned to my wife that "It's B-a-c-k-k-k". She asked what, and I had to explain and then also mentioned that I guess that this is the reason I was told that I really would not notice a difference with the new medication until after the 2nd or third infusion

Then Yesterday happened (yes of course I know it happened, there ARE usually Yesterdays). I awoke in the a.m., not wanting to be awakened. Know what I mean? That freaking Fatigue, even upon awakening. I had no mind for much of the early morning. Could not reason, comprehend or get a clear mind to tackle things such as reading and answering emails, paying bills, figuring-out which from my list of things, I would be able to do most efficiently and correctly.

I had my usual morning cup of coffee, then another and another and another. Just trying to get (and find) the energy to do things. I wanted to begin dismantling some of the holiday decorations that I had the blast of energy just a few days before my wife's holiday to finally put up and yet, when I went outside to begin separating I just looked at it and said, it'll have to await another day. No mood for figuring "how to take things apart" and just not in the mood to do anything physical. And so, yesterday seemed to drag and each task took much longer to do, than a week ago.

Today I awakened much the same as yesterday, only today, after taking the dogs out in this unseasonably chilly weather for South Florida, I crawled back into bed for another 30 minutes. I just finished my usual early morning cup of coffee and am now getting ready to make another.

Yes, let me take a break from writing as my vision today is much like yesterday Hazy and a bit blurry.
What's the deal with this?
And what's with this pounding headache I have had for the last two plus days?
Oh - I guess maybe my migraines are back too.....

So now that I have another cup of coffee in front of me on this chilly morning. Ah, this warm cup in my hands feels good. Why the heck I am wearing shorts and a polo shirt is beyond me? Dang, it's chilly. My eyeballs seem to be dancing across the monitor. Bouncing while trying to see where I left off..

With Fatigue evidently back, My balance is off, my thinking is off and my desire to do things is waning.
I know that my cane will feel like it has found it's companion (me) again as it will know the need I have for it.
Yes, My Cane will feel appreciated (LOL).

I feel like a drug addict must feel when the need for more.
I feel the need for another "hit". The "hit" being an Infusion. If this is what is needed for me to get that "Zing" back...
Is this what I have heard from others? That after three weeks, they are ready for their next dosage?
If yes, boy am I in trouble. I have to wait another 13 days til my next infusion.

Some of you might be wondering how he can write what was just written here, feeling as he says he's feeling?
Remember that:
1) I am a writer (this should have been a calling for me).
2) writing for me comes from the heart. My Heart. It's what I want others to know not particularly of me, but of the situation that I and thousands of others are living.
3) It's a way to get others to write, to respond and for their responses to be learned by others. All of this getting back to what I aim to do in providing information for others to learn-from, with regards to their MS or any other disease or illness. It's my mission to empower others.

And so, this I will again need to say, that I want to see your responses, comments and whatever else.
BUT, I need your responses to be left at this blog posting and not necessarily on FaceBook or Twitter as not everybody Tweets or Friends others.

Either you are reading this blog posting at the blog in which case just click the link shown below to comment or if reading this on Facebook, then please click this link to get to the blog, then find this posting by Title (using blog search or just scrolling) to leave your comments.

Those using this same medication, may want to let me know if anything I mentioned is justifiable or if I am just insane... And if you are new to this series of mine, then you may want to get caught-up by first reading from the beginning by clicking-on and reading from the two links found below. Read the comments left at each posting...

My wishes for each of you to NOT just have a healthy New Year, but to have a Healthy New DECADE!!

Best Regards,

Stuart Schlossman-RRMS

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Anonymous said...

Stu, two things for thought:
First: My specialist in NY had mentioned in a presentation he did that even though you will never read this by Biogen. It takes 3-4 infusions until you may feel a difference. I am only 1 infusion ahead of you.. But I do feel a difference.
Second: I read this very interesting post from a Tysabri patient who's infusion ... See Morenurse gave her a great analogy. Think of our body as a glass of water. The amount of water never changes. And every month we add a drop of food coloring in the glass of water. The food coloring being Tysabri. Every month as you add one drop of food coloring the water gets darker from the coloring that is being added. That’s our body with the Tysabri. Little by litte the Tysabri will do its thing. I have faith, and the people like you and the others that post positive information will help us all.

Kasey said...

I don't think there's a person alive who has any kind of chronic fatigue who doesn't relate to this. On those rare days where you wake up feeling actually, genuinely, truly rested, it's so easy to overdo! And for you, it sounds like Tysabri gave you a mega-dose of those days. Still, you've got to look at your long-term spoons, and maybe next time take it a bit slower, dude!

Anonymous said...

Stu, You're right about the "zing".
That's because the STEM CELLS that Tysabri releases from your bone marrow from your first infusion only last about 72 hours.
Search for-
"Papayannopoulu, T"[Author]
On PubMed to read about Thalia's research.
Unfortunately some fail to see her research that primates given a Tysabri-like drug had up to 200 times their STEM CELLS "mobilized" in their bloodstreams.
Why? Could it be those "infused monkeys" didn't have to sit still for an hour & could EXERCISE or SEXERCISE immediately after their infusions?
Is taking a SEX TOY to PUMP UP your heart rate into an INFUSION bathroom is against the law? I dunno.
Remember whatever you do after your TYSABRI infusion should be done after consultation with your doctor first!

Stuart said...

Who is this anonymous person who writes of the Stem Cell re-booting thing with Tysabri and what's with the Toys ?

Rich G said...

glad you had that burst of energy with Tysabri. I did it for 12 months, I have PPMS and if course it did not help. Eventually the fatigue was back. So 6 months ago after going off tysabri I took charge, went to Mx for adult stem cells (my blog
and I changed my diet 6 months ago to a raw vegan diet. I now have zero fatigue and feel great. I hate to say this to you but STOP the coffee and change your diet. Eat more fruits and raw veggies, uncooked and get the vitamins and enzymes that will help you from what you eat! Do green smoothies each morning for incredible energy, info here:
Supplements, pills etc, will not help you. The coffee and caffeine has destroyed any healthy aerobic bacteria you had in your gut to help with digestion and absorption and you need to build that back up. I know folks with MS do not want to hear this because we are already giving up so much in our lives but a diet of 80 pct fruits and veggies, 10 pct nuts and seeds and 10 pct protein- which you get from fruits and veggies anyway, is what you need. info here
try a living raw diet Stu, for just a week and see how you feel ! And no dairy either!

lori said...

Thanks Stu for your tysabri results.I just had my second one and i never felt so tired.It lasted for 2 days for me and now I'm back to the same status quo...I hope this works, its seems very promising and everyone at the infusuion site said that i have to wait till my 3rd or 4th treatment, so we will far as the guy saying to change your diet and blah, blah, i am a retired bodybuilder/fitness guru,believe me i know about eating that way and i still try to lead a very healthy lifestyle(tryin to watch that girlie figure you know)but i'm still tired and i cant even make it thru a 10 min,workout believe me everyone is different and on days i feel good i go for it and do what i want and on days i don't, well then i just lay is to short anymore to worry about if i had the right amount of this and the right amount of that.well have a great new year and keep pressin on...lori

Mrs E. Norma Stitz said...

Hi Stu,
I tried a rawfood diet for 6 months in 06 and it really did change my MS for the better.
Now, I eat Paleo foods (more or less) and avoid gluten wherever possible.
The rawfood diet is really expensive and difficult to follow. You need a deyhdrator, a high powered blender and a Champion juicer. All have come in useful since for drying mushrooms and making various other things.
I have been left with a strange almost phobic reaction to rawfooding. The thought of eating just one of the delicious recipes in my many books makes me shiver.
It is worth a try though, but most rawfooders are strict vegans and have quite strong views about meat eaters. Carol Alt has a couple of raw food books that do have recipes for fish (which I like).

It really did help my fatigue, cognitive and physical and gave me a huge boost. Green smoothies can be the most awful things you have ever drunk - unless you use spinach, however you do need a really high powered blender like a Waring or a Vitamix.
I hope the Tysabri continues to help.
It's worth throwing everything at MS.

Unknown said...

Hi Stu
I had progressed to the point of being bed ridden for a year before going through two years of Chemotherapy that allowed me to start using a wheelchair and walker.
I am now in my third year of Tysabri use and remember how excited I was after my first infusion. My energy level was so high that my son asked my wife if there was crack in the infusion. My head cleared and I was able to think again without the MS headache as I call it and fuzzy headed mind. I as you over did it with the physical exertion and found muscles that i forgot I had (soreness). Tysabri was designed to stop or slow the progression and everybody will react differently. I now can walk without a cane most of the time. Looking back over the last few years I have learned that the infusions have given me the opportunity to feel better and think clearly with much better movement than I had before. I believe the movement and the ability to to do more comes from feeling better. I tell people that if you feel better your able to do more but I also remind them to learn their limits. Yes I still have some bad days of feeling tired and sore. The infusion does seem to wear off after three weeks and the movement slows. I could continue on but I will leave you with the following tips.
Keep getting the infusions... Keep moving (exercise and stretch)even when you feel poorly I find this is one of the most important things you can do the more I hurt the more I need to move.... it works. Keep a positive attitude!
Good luck
Doug Crawford

Lauren said...

Hi Stuart,

Not everyone will react to Tysabri the same way..., some will experience that "zing" of energy almost immediately and it will stay with them throughout the 28 days..., some will never experience that "zing" of energy, some will experience that "zing" of energy eventually, and that it will wear off after a couple of weeks..., some will have their fatigue resolved permanently after four to six infusions..., and some like me that have been on Tysabri for more than three years still experience fatigue the day of the infusion and the day after but then my fatigue resolves itself completely before it starts to return a couple of days before my next infusion.

Rather than feeling tired, fuzzy minded and exhausted the majority of the month without Tysabri, I can live with less than a week of these symptoms because after all, I realize that Tysabri is not a cure for MS. Tysabri just maintains my better Quality of Life for the majority of the month.

In addition, as a few had stated here, your starting to feel fatigued again might be partly due to the fact that you do so much more when you feel good - I know that feeling all too well as most MS patients do - it's like the line from the movie "The Mask", somebody stop me! ;)

I hope with your next infusion of Tysabri you get your "zing" back and that you start to feel better real soon..., all my best to you and yours for a great new year -

Lauren :)

Stuart said...

My sincere thanks to all who have left feedback.

Happy 2010


Unknown said...

Hi Stuart,
Congrats on your decision to try Tysabri!!!!
I have been taking Tysabri for 34 months-
with no new exacerbations!!!!
and update Clean MRI's as of yesterdays appt w/ my Nuero!!!!!!
I am thoroughly pleased with the results of the drug..
and I hope you will be as well!
Welcome to the fold!

Happy Holidays,
Ary :~)

I sent you this note by e-mail after reading your 1st 2 Ty blog entries and you asked me to add it to the blog... took me a while to figure it out....
anyway here it is and now I have read your Dec. 29 update and must tell you...
as the month wears on I feel the waning of the drug so to speak... and I am always anxious to recieve the next "dose"... I do feel sort of like an addict... please just relax and give it a chance-
It is our best chance out there right now...
remember... I have had NOTHING new in the way of symptoms/exacerbations in the almost 3 years on Tysabri...
Thats the best newz!
you cannot ask for more than that except for a cure...
so hang in there-
take each day as it comes...
I find if I really want to do something... and have plans I find the energy...
if I sit down and begin to let go... i become one with the couch even now-
but I have a jewelry booth at the Renaissance faire and the dickens faire and hold down a full time job that I commute 45min each way to... when I make it thru work and the seasons faires (thats working 7 days aweek now break for weeks on end) my dr. and acupuncurist are amazed... Okay I am rambling now-
Just stick with it and you will be rewarded!!!
Happy New Decade!

Josie said...

Hi Stuart, Just want to wish you the best of luck. I am following your thoughts, feelings closely as I am thinking of trying for the Tysabri. I am on Copaxone for the second time and not real happy with it.I use a pain doc and internist for my M.S. as it is almost impossible to see a neuro up here. Any ways...Good Luck, wishing you success in this new stage of your fight.

Brynnlea P. said...

Greetings Stuart,

You must the lucky one as "you are my first email sent in 2010"! I see now you have joined the "Tysabri Tribe", welcome aboard! I need to see if I can "trigger your memory as to who I am". I'm Brynn from north Alabama (Huntsville area), also a friend of Cherie's & I believe she may have shared with you - her words something about my "beautiful green eyes", even with the hints, you may not remember me (as I know you deal with a great number of individuals).

The reason for my email is to share about my Tysabri experience (good by the way)! Monday (January 4th) I will be receiving infusion # 17 & thus far experienced "no problems at all". Since starting Tysabri, my MRI's have yielded negative results, no new lesion activity, stable. I am maintaining, can feel a difference (as when its close to time for infusion, my body tells me I need it). Though I no longer can function in my previous career (nursing) & fatigue continues as my # 1 issue, my lifestyle is more active since starting the Tysabri & in my professional opinion (had I not) really don't believe I would be doing as well as I am! I keep up to speed on all the latest Tysabri news, i.e. # of infusions trend showing a "higher risk for PML", but as we realize living with MS is risky business anyway you look at it. Its the "nature of the beast", merely living with this unpredictable monster, a crap shoot so to speak - so any drug worth trying in hopes of keeping the beast at bay will be with risk. The way I look at it - you weigh the pros & cons, evaluate & decide if the risk is worth taking to have quality of life or simply play it safe & allow "the beast" to rob you, my choice "its worth taking a chance"!

I wish you well "taking Tysabri" & as time goes along I think you will find it worth the gamble. Though all patients are different in every way & there is no "one size fits all approach" concerning "us MS'ers", I can say I noticed good changes about 3 - 4 months down the road! Happy New Year by the way.

Take Care,
Brynnlea P.

Stuart said...

Thank you Brynnlea for writing and of course I remember who you are.. .Your name anyway. As it is quite original...

And my thanks go to all others who have commented.

Happy New Year wishes to all

Karen Aramburu said...

I have been on Tysabri since September 2008. When I was on Avonex and Rebif I had flare-ups every 3 months since March 2006. Severity of disease is based on duration between flare-ups. Even with the heavy burden of MS in my brain and spine, I haven't had any flare-ups since I started Tysabri. The first couple months I was on Tysabri I was tired but still managed to go to work. I needed an afternoon nap in order to finish my eight hour day. My quality of life has improved with time. Tysabri has slowed the progression of MS for me and hope it works as well for you.

Susan said...

Stu, I have found similar results. I will be receiving my 5th infusion next week. The first week or so after an infusion, I feel pretty good, mentally and physically. About 2-3 weeks later, I definitely can tell it's time for the next one. Sometimes I feel even worse. I actually had an allergic reaction after my 1st infusion. My right arm which was used to infuse,broke out in an itchy,red rash. 4 months later, it still itches, but at least it looks a little better. No one can seem to tell me when it will go away. I've had the following infusions done on my left arm and so far, it seems fine. I will find out in March w/my new mri- exactly how well Tysabri is working. Keeping my fingers crossed. I've already used Copaxone and Rebif to no avail....