Good luck, Natalie...

Natalie,

Hope all went well today! Looking forward to your report!

oh darn! I wrote something and it got erased. So let me try again.

I made it through the infusion with very few problems. Whoohoo!
I celebrated with some Texas barbecue.

The nurse was rough and made the IV hurt. A young girl sitting next to me getting Tysabri gave him a lecture on not forgetting to let the alcohol dry before he stuck me (she says it hurts) and not helping the "new patient" to relax.

I'm feeling tired, a bit dizzy, and spacey like I'm on heavy drugs (not sure if this is the Tysbabri or the benadryl??) But other than that no obvious side effects.

I will be going to bed early...glad the day is almost over.

Just wanted to share some information I discovered for anyone who is nervous about starting Ty and worrying about PML. (I posted this on another thread on Stumble Inn). I had my first infusion a few days ago. I am still worrying about the risk of being on this drug but what I have come to discover is that for those who cannot tolerate interferons or copaxone a lot of the alternatives have risks too. For example, I just found out that 17 people have gotten PML on the drug Cellcept. That drug is being prescribed off label for MS. It is being used in a drug study at my MS clinic too!! So Ty. isn't looking so bad compared to Cellcept. Rituxan (a chemo drug) that is prescribed for MS off label has had a few cases of PML too (people who had lupus). So the fear mongering about Ty. could easily be directed at these other drugs too. My sense is that because the PML reports came out when Ty. was SO new that it got a lot of press. And the best thing about Ty. is that the side effects are WAY more tolerable than something like Cellcept or Rituxan. In fact, a lot of people don't even have any side effects. I am super sensitive to meds. and I noticed nothing during or after the first infusion except for some mild fatigue.

About cellcept see http://www.medscape.com/viewarticle/576907

Tysabri Progress So Far:

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

Attached Images

Ty Data to Month 15.JPG (133.7 KB, 102 views)

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.