Thanks guys -

Linda - Good idea with the extended time-frames (make sense doesn't it - the more times you cross a busy highway, the more likely you are to get hit by a car).

Natalie - this was fascinating - I don't know whether this test is available in Australia yet - but I will be asking the question.

Many thanks

Logged in #49 yesterday although it took the nurse 3 tries to get the IV in! Hard to believe I've been on this drug for 6 1/2 years. Just keep plugging along....

So glad it's still working for you!!!
I wish it worked for everyone.

Hi Natalie

Multiple 'stab wounds' were the reason I decided to have a port-a-cath inserted. Since I had that put in, it is sure-fire, once only, and almost painless. No bruising, very little bleeding and much less anxiety. It's probably only a good choice if you are JCV- though.

Howdyyyy!

Still here, still on Tysabri, still doing well, no problems, no concerns healthwise, still JCV -, still only missed one infusion since May 25, 2007.

Don't know how many I am at now but it sure has gone up in cost since I started. I lost my excellent insurance, got a plan with higher deductible and copays and then got wrapped around a helical shaft and turned, with a deductible of $2500.00 and a copay of $7500.00 and higher copays on scrips. I am considering my options right now because I cannot afford that and still have a life, even with working with the hospital on payments.

My employer thinks that is affordable because they DID reduce my copay down to where they can't get nailed for charging so much we have to go on the ACA. There's also no help from Medicaid since our governor (who shall not be named by what I call him since it will get me tossed out) refused the Medicaid funding.

Where that leaves me is at the "I don't know" stage. I've reviewed my options and I STILL haven't made a decision. For me, the original Pro/con listmaker who could always decide when presented with all the options and evidence needed, it's a weird place to be. It involves many changes, leaving a job that I have loved for years, maybe leaving my home, maybe early retirement, maybe changing treatment, maybe just staying where I am until I just cannot take it anymore and then deciding. At this point, I've decided to continue in my limbo until after the new year because tax wise it gives me more options and time to decide.

So, here I am.
Hope you are all well and having a healthy start to the holiday season.

Riverwild, your out of pocket costs are outrageous I would contact Biogen to find out what they can/will do for you. I am so sorry this happened!

Linda

Yes Riverwild, get in touch with Biogen. My insurance changed. I called them up. No co-pay on the drug, just pay for infusion costs. I don't know how to explain this properly but the insurance gets billed for the full amount of each infusion (so it goes toward your deductible) but then you only at them the reduced amount.

I'm not explaining this very clearly but after 2 infusions I have now met my out of pocket maximum due to Biogen's and my clinic's billing process. This means now all my medical care is covered 100% for the remainder of the plan
year since I reached out of pocket on the books. Anyhow it's worth contacting them. If you qualify right now the drug is free (as opposed to the old $10 copayment).

Good luck! You can't give up Tysabri. It's kept you well for so long.

The last time I talked to Biogen (last year?) was when my insurance went from the lovely $100.00 deductible and $400.00 co-insurance to 500.00 deductible and 2K OOP. They couldn't help with infusion costs, just the drug and my problem is infusion cost. I thought that was bad. This is a whole new ballgame with 10K a year. I'm not ashamed to admit that I cannot pay my bill at the infusion center. I figured I would just make the min. payment, sell my house when I retire, live off the $$ I hide under the mattress and die without any assets.

My company is under new management and I have been bent over repeatedly for the past year. They refuse to give me time off, I can only accumulate a certain amount of time or I lose it, I can't cash it in anymore and so far I have lost almost 1K in paid leave since July. There were no raises, there's no holiday gift or party or bonus and they won't even kiss me...I hate this limbo. It used to be I just had to worry about myself but there's not just me anymore so I can't just up and go paddling on a whim and toss a job like I used to. I feel like I am inching forward and then pulling back as if the water is too cold to dive into, know what I mean? For me, it's a peculiar sort of torture I am living and I am still unsure where to go from here. The old man thinks I should shut up and stay put and I am of the mind that I have been in one place for too long and the seat doesn't fit me.
I'm some freaking ugly at home and at work and that's not good either. One could take out my relationship and one could take out my income. Either way, something is going to change soon. I'll let you know who comes out on top...I know who I am betting on!

(((((River))))), so sorry that the river is not running smoothly for you, here lately.
I'm hoping a door will open soon for you. In the meantime, deep breath, and
enjoy what you can, when you can..

Ditto what Sally said. That all sounds very stressful and awful. Keep us posted. Sending you positive energy and good karma!