Hey Joe!

I got to thinking after I responded to your post on the MS board.

Transient reactions have been noted in people who start Tysabri., with a lot of them calming after 4-6 infusions.

If your blood test comes back positive for antibodies, your neuro may keep you on Tysabri for the next few months and check them again, as long as you aren't having full blown allergic reactions. That's why a lot of them use the benadryl/tylenol protocol. They aren't having anyone take more than 25-50 mg. of benadryl. The usual is 25 mg, more of a calming dose, to stop the histamines from ramping up.

I'll see if I can find the info on this for you. I have it stored somewhere, but I am off to work and don't have time to search right now>

Cheryl - I wrote a long explanation regarding the VA and my experieinces many years ago, and then had to delete it because it said too much and it will open a can of worms. For my squad, dealing with the VA is tantamount to opening Pandora's Box.

All of us would rather continue to rely on each other as we did over 25 years ago than to bring back the VA nightmare. This is why we all obtained individual policies outside of the DoD.

I did come close to opening this can of worms when I received a check a while ago. I just split it among those of us still around, and it helped bring us even closer at a time when it was needed badly by a few of us. I have to thank Sandy for this.

RW - It is amazing how much is being charged. There are so many people with high deductables that the costs just drive them away from all MS medications.

-Vic

Transient allergic reactions? (Not that Joe's reaction seems too serious at this point ...). Or, do you mean "antibody" reactions?

Maybe you know why the manufacturers (and FDA) have made a point of saying "Do not take Tysabri if you are allergic or have PML", yet many are advised to take antihistimines so that some allergic reactions end up being masked? To me, this seems contradictory, but maybe I'm missing some part of this story.

Cherie

I am impressed that they took his blood to test for antibodies after his first reaction. And they did not test me until after infusion # four. In my case the benadryl did not mask the reactions, although I assume they could have been even worse.

[QUOTE=Riverwild;394588]

The actual infusion costs were only $1200.00 and that was with all supplies and everything! One infusion costs $7700.00+. The price has gone up every month since I started.

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RW:

That is highway robbery!

Our provider charges our insurance company $2273 for a vial of Tysabri. The neurologist's infusion center bills $579 for the infusion but accepts the $202 payment that insurance covers since he is a "participating" doctor.

So, the insurance grand total payment per infusion is $2475 in our case. We pay nothing out of pocket under the medical insurance plan that my labor union negotiated. How can these numbers vary so greatly as many have reported here?

I can retire in 13 months but I'm now reconsidering - just to keep the same medical insurance to cover LL's meds.

Obama will solve this mess.

As my post-Tysabri adventure begins, I will keep the progress charts going as they may show what happens when you are off of the medication.

So far, there are no significant differences since I stopped.

I had another email discussion with my neuro-team and they want to wait for an additional four months before I start Rebif since the medical literature says that it takes 6 months for Tysabri leave your body.

I get the feeling that this may be a delaying "tactic" since they seem pretty excited about some new medication that is in the works and should be ready soon for our use. If I find out more I will let you know immediately.

-Vic

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I agree, Joe has very attentive doctors, doesn't he?

I also agree that Benadryl will not mask severe reactions . . . but the documentation does not refer to JUST severe reactions. It says "do not take Tysabri if you are allergic", and it defines allergic reactions to include symptoms as minor as hives or itching. Benadryl may very well mask those type of symptoms.

http://neurotalk.psychcentral.com/thread57177.html

Cherie

If there is a big difference in how well you do now, Vic, it may indicate how well Tysabri was doing for you . . . OR it may indicate a "rebound effect" from being on it. Either way, it will be interesting.

I'm glad they are waiting 4 months too , and hope that something new is available for you by then.

Cherie

No great in put here
yes - the cost of ty went up for all - I think mine went up 1000. per mo, but can not pull data - now at 6201.50 but not really. I have indv. pay BCBSNC - the infusion centers contracted price is 3100.30. So they bill for 6201.50 and get 3100.30 I pay 0. If I did not have ins I would be billed at 6102.50. I think it use to be 51 or 5200. (ck prior posts as it is there).

What I want to know is what the Hel# happens to the few of us who have this crap and 0 ins. This may be me soon and will be some day. I live on borrowed money ccards... u Know the deal. The ins in USA sucks!

Great point, Cherie.

For the first time in two years I actually have facial numbness and numbness in my hands. Hence one may say reliably that the absence of Tysabri in my system for 85 days could be the reason for these symptoms.

-Vic