Glad to hear # 19 went well Wiz!

I'm also glad to hear he is keeping up with the eye thing. It may be nothing, but it's docs like yours who are catching PML early enough so that there have been no more deaths and minimal disability in some of the cases.

How things stand right now:
(1) Tysabri infusions, the Tysabri co-pay and associated tests have cost me more than most people make in two years.

(2) Anthem Blue Cross will only cover the remaining 2 months of Tysabri this year, wherein they cover the entire medication cost, but not the infusion cost. The subsequent ten months of 2009 will result in costs similar to 2008 (though slightly higher).

(3) The decline in QOL was noticable after 12 months on Tysabri...and that in my opnion was a direct result of the stress caused by the costs.

My Plan:
(1) After Thanksgiving I am on Rebif for certain. The cost will be $25 per month.

(2) IVSM starting tomorrow.

(3) Ophthologist this week.

(4) An AFO next week.

So the plan is final. Tysabri is done.

I am going to just relax for the rest of the day and pay bills & wash clothes in the morning.

My Tysabri Log will continue until I begin Rebif soon. Post-Tysabri data are valuable.

-Vic

Hi Vic, Wow. Sounds like way too many ups and downs with this Tysbari business. You sound good, though. I guess all you can do is just be as zen as possible. I'm optimistic about new meds on the horizon. I've been reading a lot about them lately. I know your neuro is on top of this.

Anyhow, sorry you had to deal with the "one minute this, the next minute that..." bull#&%*$. I've been having my own Tysabri problems lately but nothing like yours.

There is something to be said for eliminating the stress of money, though!!

Good luck with the IVSM.

Natalie

Vic,
I am just so sorry to hear this. I've been working on this problem with no solid answers.

The problem lies with infusion centers and their costs, whether they are private infusion centers or run by a public health organization or a nurologist in house; insurance issues and differences in policies, whether they are self pay or employer sponsored, public or private, etc etc etc.

It's a vicious circle and there seems to be no end.

I am sorry to hear you will lose because of this issue. It just sucks.

Actually I loooove adventures and data-crunching, so this turn of events will be fun! Some say I am nuts, and maybe I am, but documenting the end of the Tysabri adventure has value and is neat to me.

Rebif will be a new adventure and I am looking forward to the process.

All in all, it could be so much worse: I could be in a third world country dehydrating, starving and trying to avoid military strife.

I am one lucky SOB!

-Vic

I had my 5th infusion yesterday. It was relaxing and quiet (unlike past times). This time I had a different nurse who actually read the questions the TOUCH protocol requires (unlike the first 4 times). It's a long complicated story. Needless to say, I've drafted a 2 page letter to the director/neurologist of the clinic complaining about all the problems with their administration of Tysabri and the failure to follow the TOUCH protocol.

I feel wiped out from the infusion and now have a low grade fever, which I have gotten a couple of times after other Ty. infusions. But other than that things are fine and dandy! Glad the election is over too.

Glad to hear it all went well for # 5, Natalie!

How long does the fever usually last? What does your neuro say about it?
Do you treat it with tylenol or what? Enquiring minds want to know...

I go for # 20 tomorrow and see the neuro afterwards, after working all night!

Hi RW,

The fever lasts no more than 2 days and it is very low grade (99.1 or 99.2). Out of 5 infusions I have gotten it 4 times. But my normal temp is usually 98.2 so I notice I feel crappier when it's a degree higher. I just take naproxen. Actually, I haven't told the neuro about it. I probably should. I haven't mentioned it I guess because it doesn't last that long and I had problems with low grade fevers for so long in the 1 1/2 years before I got diagnosed with MS and even after getting diagnosed. I had a bad case of mono for almost 9 months a year before the MS and I'm not sure I really recovered. So the neuro knew all about the fever problem -- I had been seeing a rheumatologist in the beginning too. But ironically, the continuing fevers (for days at a time and a higher temp) have actually gone away since I went on Tysabri!!! This has made me so happy because without the fevers I have felt a million times better. And it is a complete mystery to me why the Tysabri would make those annoying lingering fevers go away (they call it "fever of unknown origin").

Good luck with #20. I imagine you must take a nap in the infusion chair if you go in after working all night!

YUCK on the mono and being sick for so long!

I know I have something about this (fevers) in the studies and when I come across it in my files I will send it over.

I actually don't usually get a nap in the chair! Once I am awake, I am AWAKE, and just driving there and being exposed to actual daylight revs me up!

(i should be in bed right now!)

My Final Tysabri Graphs:

During the months that I have been off of Tysabri (the "wash-out period") the data indicate what one could expect when off of the medication (as shown in the graphs below.

-Vic

Attached Thumbnails