Lots of good stuff coming through the wires from the AAN today!

Just a taste of what's being reported:


http://www.reuters.com/article/healt...AS778120080415


More will be forthcoming as the confrence partcipants release their abstracts and studies.

Just an update:

I had my Ty infusion on Monday and all went fine at the new infusion center. Thank goodness for small favors . I haven't had a chance to read anyone's posts, so I hope everyone is doing okay .

Glad to hear it went smoothly! Hope all is well with you and your family situation. Let us know how you are doing when you can get to a PC.

River - thanks for the info - that was nice to read. I know a lot of people were freaked out by the CEO (or someone high up) at Biogen Idec saying they expected more reports of PML. I think that was just the company trying to cover their butts in case it did happen. Anyhow - yay for good news!!

Joelle - glad your infusion went smoothly at the new place!

~Keri

A NEW GRAPH SERIES FROM MY TYSABRI ANAYLSIS

The graphs shown below can be interpreted as follows:

Walking Endurance - The amount of time, in hours, when I do not need to use a scooter or cane. On aveage (red line) this has been improving since Tysabri was started.

Fatigue - The number of hours each day before I am physically fatigued. It is the same as "stamina". One average (red line) this has improved dramatically since I started using Tysabri.

Balance - This chart is actually a description of how often vertigo strikes per day. The data points are averages from data accumulated over a 28 day period (between Tysabri infusions). As is indicated in the graph (see red line) the number of vertigo episodes has dropped dramatically since I have been using Tysabri.

Ankle Movement - The intent of this graph is two-fold: (1) to describe ankle agility, and; (2) to show the potential of "foot-drop" accidents as it relates to the inability to lift the toe prior to taking a step (i.e. if the toe does not lift, then the foot rubs against the floor and you can trip). On average (red line) ankle movement (relative to "foot-drop" has improved slightly.


I am looking forward to collecting at least 25 infusion data points so that I can draw some legitimate conclusions about how Tysabri is working for me. Any statistical analyisis with less than 25 data points (infusions) is suspect. As such, I have just drawn some general trend lines in these graphs (actually, they were generated my Microsoft Excel).

The second graph shows the actual "ou-of-pocket" expenses for Tysabri for me with my Blue Cross/Blue Sheild Insurance. If I had no insurance, oddly enough, it would be much lower (about $400/month for the infusion center). However, without insurance I would be risking everything if there was a catastrophic event that required millions to be paid to resolve.

-Vic

Attached Images

	TY Data to Month 12.JPG (137.5 KB, 81 views)
	Ty Cost.JPG (86.9 KB, 83 views)

Update - My infusion for the 15th was canceled. Infusion center Neuro (not mine) required a clean X-Ray and blood tests. Bottom line - they thought I was lying when I said I was well and had been. I passed both tests and am set to go again on Mon.

I have not posted b/c while I may understand this that does not keep me from being angry. My anger was too high to allow me to post. I would have said some very bad things. I know me and my mood swings. LOL

This may have even been good for me. I have 1 known side; swelling mainly in my left leg from calf to foot. It is down a bit in last few days so that is good. I hear Ty hits one hardest the 1st time then kind of easies off. Does anyone know if true or not? My neuro does know of this and paid no attention to it. Thank You

Sheena,

I am not aware of Tysabri hitting hard the first time that you use it. For me, it seems that the infusions have always been the same: mundane and without side-effects. But that is just me. Others have had reactions to it. If I have one bad reaction to it, then I am stopping for good. Besides, I would love to save the $36,000/year it cost me just to use it. The cost, even with my insurance, is obscene.

-Vic

Wow Vic. Am I understanding this correctly?--that you have paid $36,000 out of pocket with the Tysabri? Yikes!! What is the retail value of Tysabri a month?

Natalie,

Yes, even with my insurance, Tysabri is costing me $36,000 per year out-of-pocket.

I think the retail value of Tysabri is about $4,500 per dose, and then you have to add on the infusion center costs.

It is disgusting and shameful that people have to pay so much for a medication.

What I have found is that the initial "quote" that you get for the cost of the Tysabri is BS. Similarly, the infusion center costs are BS.

Heck, MS is BS.....but that is just the way it goes.

It is no wonder that my dream of owning a P-51 went up in smoke. But, as I have said in several threads, it could always be worse.

-Vic

Hi!

I just read through all of the posts in this thread so far. Thank you everyone for the information--all of the good news and some not so good things to watch out for...

I will have Ty infusion #1 on Monday. I've been dealing with my nervousness by reading everything I can.

A little about me:

• DX'd 2/2006.
• Daily Copaxone for ~2 years (except for some months to try other choices). Last inj 3/21.
• 3/2008 MRI showed 7 NEW lesions.
• Overall, my worst symptom is FATIGUE, coordination / numbness issues, and leg pain.
• Used to have awful burning sensations in my feet and wore ice packs frequently. This happens very rarely now, but I still like the name.
• I am pretty positive, silly, and grateful.