TYSABRI PROGRESS SO FAR:

Here are my updated graphs regarding some of my Tysabri data.
(1) Walking Endurnace: Improved slightly since the start of Tysabri.
(2) Vertigo: Reduced markedly.
(3) Hours Before Fatigue: Vast improvement.
(4) Ankle Movement: Improved slightly since the start of Tysabri.

Limiting Data Factors:
(a) Excessive heat in So Cal.
(b) Limited exercise
(c) Periodic UTI's

Conclusion:
(1) No exacerbations while using Tysabri.
(2) Periodic UTI's
(3) Has not stopped overall MS progression, but rather delayed it.

Clinical Observations:
While the data thus far indicate that I am stable, and I do feel great, the reality is that I have progressed to SPMS based on over two decades of medical observation by my medical team. That is not as bad as it may sound since I have had MS for a long time.

HERE IS THE "KICKER":
Although I have progressed to SPMS, I do not notice it per se as I have habituated to it and feel (and function) much as I did when I had RRMS.

Would Tysabri have prevented this if I could have used it ten years ago? Probably not. This is just the natural, biological course of human entropy.

What has medication done for me? I think that other than draining my wallet (six figures soon), it may have made the progression much less of an issue, as I am fully functional and productive. It is like having a chronic cold, with just a few coughing episodes...wherein you know it will eventually lead to pneumonia but there is a delay in the time that you get there...and you know it.

Thus far, I have concluded a few things about my MS:
A - My MS is a tolerable condition.
B - MS just IS, like so many other things in life...
C - MS has made me appreciate the most simplistic of things!

-Vic

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Has anyone had the drowsies on Ty.? Ever since the first infusion a week ago I can barely stay awake during the day and constantly feel the urge to nap. I'm hoping it may go away after being on it for awhile. I can't complain too much, though, because other than that...no side effects. I just need to keep my eyes open for work!!

Natalie -

After each of the 2 Ty infusions I had, I was "down" for about a week with exhaustion and feeling blah. I have to say - I felt worse after each Ty than I did after 4 days of high dose chemotherapy that I just underwent. The neuros at Johns Hopkins told me that my experience with Ty seemed to indicate that it was some sort of allergic reaction to it in some ways - not in the usual ways that have caused people to stop treatment with it....as long as it didn't cause a tremendous problem. I've been told that it might have gotten better with each treatment.

Good luck - and I hope Ty works for you and that your future infusions don't leave you so drained!!

~Keri

Natalie:

My wife would nap 3-4 hours on the day of each infusion - but she usually bounced back with increased energy the next day. This was consistent for her first 8 infusions.

She just had infusion number 9 last week but didn't have the drowsies this time.

JJ

Indeed.

I do get tired after the infusions, and during the week once in a while.

Hi Natalie,

For the first several months, I'd be tired for about a week after, and then again a week before the next infusion. It started to level off though around the 5th infusion or so.

I still have the good old MS fatigue (not!) but I only have about a day of tiredness following the infusion now.

Had infusion # 16 this morning, on three hours sleep!

Everything went well.

I did have some pinpoint itching that had no other cause that I could tell. Spoke with the neuro afterwards and we are going with 25 mg benadryl and 1000 mg tylenol 1 hour pre-infusion next month just in case!

What the he!! is the tylenol for??? LOL!
(I didn't have a whole lot of time and forgot to ask!)

1 1/4 years without a relapse!!

I just got home from infusion number 3............No problems at all.
Already my balance is better and I have noticed a marked improvement in bladder function. Looking forward to number 4.........onward and upward!!!Barb

She got me on the 1st stick - good thing since I had blood taked 1 arm, and die put in another the day before for a scan. Both non-MS or TY related. Anyway - no probs so far w/infusion.

So far so good. A bit sleepy when I got home but I fought it and all fine w/in an hour. No sleep this this time Yea!!!!! Best reaction yet.

I'm still not out of 1st relapse of 1-31. It is 90+ better, but u known me. I want out. Better even since the infusion but not out. I( understand some turn to much better after 5-6.) I hope this is me. It does look like it may be going that way, Time tells all.

Lookin forward to #6. I'll update if a prob.

Keri - I would like to know how things are going and a 1st number to call just to get the process started. I am with you 100% They think I may be able to get in. But, I have to move fast - I still have to active. Pls advise

Just finished Infusion #1 yesterday!!!

I'm so relieved---and it went so well! No reactions, no problems, and they even found a vein in my hand right away, which is remarkable, since my veins are notoriously small and "roly."

Both yesterday and today I've had no fatigue, no side effects--nuthin'! So far so good.

My wonderful PCP and his staff say that I'll probably have to have a port put in my shoulder, because of my non-cooperative veins--but they want to wait a couple of months to see how I continue to react to the infusions. If the TY is helping, then we'll go for it.

Just wanted to let everyone here know that you've been a terrific source of information! During the last several months, while I had to make decisions concerning treatment, all of you who participate on this board gave me so much information, support, and encouragement--without my even having to write in and ask for it!

Whenever I've had concerns or questions about TY, I've come here and found a wealth of answers. I really appreciate it--you've all made this so much easier.

I'll keep posting in as I continue on my new TY journey. Thanks again, everyone!