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

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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

FYI - to be sure that our home cannot be attached to pay medical bills, we sold it to a charitable trust. If we had not and then could not pay our medical bills, the home would be sold at auction to pay off both Biogen and the infusion center.

Hence, legally I do not have a dime to my name. Nor does my wife.

There is no other way of protecting hard-earned assets.

The price for MS stability is financial instability,..., even if you have health insurance.

What I did not add to the previous "Tysabri Cost graph" are the other associated bills: actual health insurance cost per month. That is an additional $750/month or $9,000 per year.

Hence, our actual medical bills total $45,000.....each year while on Tysabri.
Before I was insured, my medical bills were $37 per month on average (including office visits and Avonex). But, if I got hit by a truck...and the hospital bills were massive...then we would have been nailed to the wall for life.

What a medical system....

LOL

-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.

Vic,

You do what you have to do. And you are right that it could be worse. Congrats on all of the improvement! I'm glad your fatigue and endurance have gone up and the vertigo is waning. I love the graphs. I can tell you are a scientist at heart.

But honestly, this health care system we have is just crazy. I'm still speechless from Tysabri sticker shock (plus those insurance costs). I didn't know one could sell a house to a charitable trust. It sounds like you have been financially savvy in protecting yourself. I know in general there are people not getting treated for MS because they cannot handle the costs, even with insurance. It's tragic.

By the way, I see you are in Riverside. How is the weather in So. Cal. these days? I lived in San Diego for 8 years and miss it terribly.

Natalie

Hotfoot, welcome to the community!



I hope you will keep us posted about your experience. I think you will find there are a lot of great people around here.

Good luck with that first infusion!