NeuroTalk Support Groups - Tysabri Information & Check In

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I am back to edit my previous post for a typo that I made.. I am not going to change the previous post, but make the change here so there is no question that the rest of the information stands as posted.

"They admitted that the monotherapy rate of PML is 2:35K+ at this point."

That statement should read 1:35K+

One patient, naive to ANY treatment outside of steroids, no interferons, no copaxone, no immunosuppressants, nothing. That is the ONLY patient who was truly a monotherapy patient out of every patient who has been diagnosed with PML and that is also the patient whose diagnosis is in question at this time.

I stand by what I posted for the rest of the information I got from the seminar and the discussion. I will debate the merits of stastics and sources on the other board.

Just an update:

I have been on a treatment of IV Solumedrol while waiting to start Rebif.

At 8:00am PST the third infusion will start.

This stuff is amazing! Those cruddy little symptoms are being alleviated in a big way and I could not be more amazed than I am at this time.

My nurse arrives between 6am-8am and the process is completed in one hour.

Noticable Changes Already:

(1) Vertigo is gone.

(2) I can walk better.

(3) Foot-drop is minimized

(4) I can feel things in my hands

(5) Restroom breaks are a breeze.

-Vic

Wow Vic, I'm happy for you that the IVSM is working so well! :)

As for me, I have my first UTI in a long time but I think antibiotics will take care of it.

I have some Proquin XR with an expiration of 11/07, I wonder if it would still work? My neuro is out of town but he might call the office this afternoon so the nurse can ok an RX to be called in.

My other option is to go to convenient care and wait in a germ infested environment (with all the people coughing and sneezing) to see the doctor... :cool:

Just spoke to the pharmacist and he told me not to use the old ABX.

Wiz,

I hope that the UTI is resolved soon.

I am a big fan of Cipro.

-Vic

Thanks Vic,

I'm feeling better today.

I got Bactrim 800mg yesterday to take 2x daily for five days. I called around to all my doctors and two were out of town so I had to call the ob/gyn doctor. Luckily, he's very sharp, so he gave me the RX with one refill. He also said they were doing a culture to make sure the Bactrim would take care of it. If not, they'd call in a stronger RX. He said that most doctors would RX Levaquin automatically, but that doing so is like killing a mosquito with a shotgun. :icon_rolleyes:

I've had both Levaquin and Cipro before and they've worked well for me. Once before the local urologist RXed Bactrim and it did the job. I'm already feeling better today after two pills (horse pills) ... what a relief.

I'd been feeling pretty confident that I wouldn't have infections while on Tysabri. :rolleyes: I hope this is a very infrequent thing.

Quote:

Originally Posted by Victor H (Post 404859)

Keri,

I was/am caught between a rock and a hard place so to speak. My net worth is too high to qualify for assitance and my available cash is too low to pay for the infusion center costs.

I have a Major Risk Medical Insurance Graduate Plan through Anthem Blue Cross, wherein the deductable is insane and the out of pocket costs are equally insane. My PPO will not budge on the infusion center costs, and they are even worse if I go to an infusion center outside of those listed by my insurance plan.

There have been at least six people helping me with solving this issue (two neurologists, one attorney, one Patient Advocate, Biogen and Lauren) and we have all come up with the same numbers --- outlandish infusion center costs. Hence my new path to Rebif.

It is just one of those things that happens with a damaged healthcare system.

I will survive and press onward...

ON A MORE IMPORTANT NOTE:
How are you doing with your new treatment?
It sounds like a viable option for many folks.
Thanks for keeping us in the loop! I appreciate it.

-Vic

Hi Vic,

So, you have been on-again :), off-again :( so many times, I'm just wondering if the most recent 'final' result is that you (and the other 12 people at your center, if you know) are on-again . . . ?

MSRC kindly posts "Tysabri User Diary's" for some people who want to blog their Tysabri experience, and yesterday they posted a link to Lauren's Diary on another forum. I was having a read of how she is doing (well, it seems :)), and she mentioned that she had helped to resolve the infusion center issues for you and 12 others at your center.

Perhaps she documented that update a while ago, and they just got around to putting it on the site recently :confused:, but then again, maybe I missed an update where you are back on-again. :confused:

http://www.msrc.co.uk/index.cfm?fuse...ow&pageid=2339

So, what's the latest scoop?

Cherie

Quote:

Originally Posted by lady_express_44 (Post 407463)

Rebif for sure.

It starts in a few weeks.

I spoke with my previous Tysabri infusion nurse a few moments ago, and now the entire infusion center has only one remaining Tysabri patient.:eek:

Amazing...

-Vic

Quote:

Originally Posted by Victor H (Post 407512)

Thanks, Vic . . . thought maybe I lost track of whether you deserve a :) or a :( . . . but it sounds like you are ok with things either way now. I guess it's nice to get the stress of the decision and uncertainty off your back ....

That's really too bad about everyone else too. It is kinda' crazy that they priced themselves right out of the business, and it doesn't make sense that they would either. :confused:

Cherie

Quote:

Originally Posted by lady_express_44 (Post 407681)

Cherie,

In order to off-set their massive loss of Tysabri patients, the corporation fired seven of the full-time infusion nurses and has hired part-time staff.

It is really a pitiful situation.

-Vic

Quote:

Originally Posted by Victor H (Post 407918)

In order to off-set their massive loss of Tysabri patients, the corporation fired seven of the full-time infusion nurses and has hired part-time staff.

It is really a pitiful situation.

-Vic

That's a great way to save money! No benefits for the employees and now you have a bunch of part time nurses and no continuity of care! That bodes well for the TOUCH program!!!

:D:(