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Old 04-27-2008, 10:54 AM #1
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Originally Posted by Victor H View Post
There are two MAJOR obstacles for me in dealing with Tysabri: Tysabri cost and infusion cost.

TYSABRI COSTS:
About ten minutes ago my neurologist, Gail Hartley, called me and set-up a call with the Biogen representative. Gail is amazing!

Moments after my call from her, I received a call directly from Biogen and they are working out a plan to help me deal with Tysabri costs! I should hear from them on the final cost after their financial assitance in ten days.

Woooo Hoooo !!!


INFUSION CENTER COSTS:
I have been contacted by my insurance company and they too are amazed at how my infusion costs have gone from unbearably high to unrealistic. They are investigating the costs and are negotiating with the infusion center now. They may have me change infusion centers to a lower cost one that was just opened here in Riverside, CA. That, in terms of a potential business loss to my existing infusion center, should drop the price significantly!

Another Woooo Hoooo !

-Vic

I received a letter from my insurance company regarding my Infusion Center costs.

Looks like BC/BS is not taking this high infusion center cost lightly.

The infusion center cost was $2,100 per month, of which I was responsible for $931. One of the errors made by the infusion center was not just the high cost, the the way which they varied the cost, seemingly at random.

My new out of pocket expenses for infusions has dropped to about $179 !!!!

Woooo Hoooo !!!

Now I just have to see waht Biogen can do for me regarding the cost of the Tysabri.

That's one down and one to go !

-Vic
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Old 04-27-2008, 11:03 AM #2
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Originally Posted by Victor H View Post
I received a letter from my insurance company regarding my Infusion Center costs.

Looks like BC/BS is not taking this high infusion center cost lightly.

The infusion center cost was $2,100 per month, of which I was responsible for $931. One of the errors made by the infusion center was not just the high cost, the the way which they varied the cost, seemingly at random.

My new out of pocket expenses for infusions has dropped to about $179 !!!!

Woooo Hoooo !!!

Now I just have to see waht Biogen can do for me regarding the cost of the Tysabri.

That's one down and one to go !

-Vic
That's great Vic! Perserverance pays off!
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Old 04-27-2008, 11:36 AM #3
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That's great Vic! Perserverance pays off!
It is looking good, Cheryl !

-Vic
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Old 04-28-2008, 09:31 AM #4
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Default What is your guess - kept on or off Ty
1st Infusion I had 2 sides - rash (1 day nothing to speak of ) and swelling of the /feet/ankles/
2nd infusion I had 2 sides - rash (now getting better but turned as some do ) to a burn, a lot more swelling of the feet/ankle/leg ( left). It was bad, but I controlled with Benadril. Almost back to normal 1 week later
BTW - swelling is listed in the IV handout as a side

Since the sides on the last infusion were much worse then the 1st time, I have left message with neuro. If next time were to be worse then this, I would have to go to ER. I'm not scared of the sides as long as neuro knows. This is the pro ty neuro.

What is your guess? Will he pull me off ty or let me stay on.
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Old 04-28-2008, 09:38 AM #5
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Sheena, Are you presdosing with benadryl? Have they tried giving you an iv of benadryl prior to infusion. Do these side efects happen during the infusion or after?
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Old 04-28-2008, 10:44 AM #6
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Hi Barb, yes presdosing with 2 benadryl - no on the iv. Sides start almost exactly 26 hours after infusion.
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Old 04-28-2008, 12:41 PM #7
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[QUOTE=sheena;268088]1st Infusion I had 2 sides - rash (1 day nothing to speak of ) and swelling of the /feet/ankles/
2nd infusion I had 2 sides - rash (now getting better but turned as some do ) to a burn, a lot more swelling of the feet/ankle/leg ( left). It was bad, but I controlled with Benadril. Almost back to normal 1 week later
BTW - swelling is listed in the IV handout as a side

Since the sides on the last infusion were much worse then the 1st time, I have left message with neuro. If next time were to be worse then this, I would have to go to ER. I'm not scared of the sides as long as neuro knows. This is the pro ty neuro.

What is your guess? Will he pull me off ty or let me stay on.[/QUOTE]

Sheena, you should be direct with your neurologist about the prospects of using another medication if Tysabri is causing problems. I suggest strongly that your neurologist keep as many avanues open for you as possible.

Keep us posted.

-Vic



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Originally Posted by CBo79 View Post
Hi my name is Crystal, I just introduced myself in the Newby forum. I have been dx'd since Feb 2005. I have had HORRIBLE MRI's in the past so they started me on Ty in June 2007, I thought it was my miracle drug and was doing awesome on it, until Feb 2008. I have had extreme pain in my legs, numbness in arms/hands/legs, spasticity (this is new never had it before), memory loss, vertigo, insomnia, and depression.

Am I the only one who has relapsed while being on Ty? I go see a new neuro on Wed and I hope he can spread some light.

I also quit working in March and am filing for LTD and SSDI. UGH! This seems like a great board!
Crysal, you are not the only one who has had an exacerbation while using Tysabri. There are many folks for whom Tysabri just is not helping. Be sure to discuss alternative medications with your neurologist on Wednesday. Let us know how it goes.

-Vic
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Old 05-08-2008, 05:24 PM #8
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I received a letter from my insurance company regarding my Infusion Center costs.

Looks like BC/BS is not taking this high infusion center cost lightly.

The infusion center cost was $2,100 per month, of which I was responsible for $931. One of the errors made by the infusion center was not just the high cost, the the way which they varied the cost, seemingly at random.

My new out of pocket expenses for infusions has dropped to about $179 !!!!

Woooo Hoooo !!!

Now I just have to see waht Biogen can do for me regarding the cost of the Tysabri.

That's one down and one to go !

-Vic

I am glad that there are folks on my side regarding Infusion Center billing and Tysabri costs.

My infusion is being delayed until this issue if resolved, because the infusion center is not yet getting the message. Biogen is dealing with them as I type this note.

Here is a copy of the bill that the infusion center just sent me. It is my co-pay, after my insurance company has already paid its part.

I will note on my Tysabri graphs, assuming they continue, where my Tysabri infusion was delayed.

-Vic
Attached Images
File Type: jpg Infusion Center Bill.jpg (52.5 KB, 109 views)
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Old 05-08-2008, 06:32 PM #9
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Looks like I have to pay the $1,346.58 today.

The "Assistance" will not be made available for a while.

Ugh...

ALSO: I will be on-time with my infusion schedule,...broke,....but on-time. So there is no need to annotate the gaphs!
Last edited by Victor H; 05-08-2008 at 10:39 PM.
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Old 05-09-2008, 12:52 AM #10
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Default So sorry, Victor
Victor, I'm sorry the cost of your Tysabri remains a problems. Question - why not go to a different infusion center that charges appropriately?

As for their assistance program, through NORD, anyhow, they have a long process. I actually have the paperwork - and I'm still gathering all of the documents for them. Sigh. Like I have the energy for this! But they also told me that it will take time even when they do get it all - and they won't pay retroactively.

When I was on copaxone (for 5 weeks), their financial assistance was available to me immediately and it was seamless. Oh well.

Tomorrow I have my second infusion. I spoke to my neuro today and he said it was okay to have the Ty while on antibiotics. Not going to post more about this...at least until after I have the infusion. I'm already 5.5 weeks since my first one - and I don't want it delayed any more!

Vic - I hope it all works out for you....


~Keri
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