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NightWatcher

(39,358 posts)
Tue Jun 25, 2013, 10:38 AM Jun 2013

from an email: 4 exciting new treatment options for Lupus

The email from the Clevelander Clinic and Alliance for Lupus Research goes on about what a great time it is...

Here's the catch.

1. Benlysta $34,000 a year
2. Rituxan $18,000 to $27,000
3. Thalomid $50,000
4. Xeljanz $24,000.

Oh yes, #3 is the same drug that caused tens of thousands of birth defects.

I currently can afford/am on
Plaquenil & Methotrexate $500.00 a year combined



It's not a wonderful time to be sick when you're on disability and the cost of a year of each medicine is more than you'll receive in 2-4 years combined. Had I won the lottery, sure I'd be getting top notch care and drugs, but MOST OF US DIDN'T WIN THE LOTTERY

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from an email: 4 exciting new treatment options for Lupus (Original Post) NightWatcher Jun 2013 OP
Thalidomide has been a drug of last resort for a long time Warpy Jun 2013 #1
My dad has been on plaquenil for 30 years NightWatcher Jun 2013 #2
I agree, azathioprine is horrible stuff Warpy Jun 2013 #3

Warpy

(113,130 posts)
1. Thalidomide has been a drug of last resort for a long time
Tue Jun 25, 2013, 06:50 PM
Jun 2013

for a few diseases. It costs that much because the drug company is keeping lawyers on retainer in case another disastrous side effect turns up. The others are "biologicals," drugs I can't take because I seroconverted to Hep B before there was a vaccine for it. I got the antibodies without getting the disease, but it's still lurking in there somewhere since the virus never goes away.

I failed to tolerate both MTX and Plaquenil, unfortunately, managing 5 years on each before I just couldn't do it any more. I manage on steroids now and I know Thalidomide might be it before much longer.'

Too bad, the biologicals are cheaper.

NightWatcher

(39,358 posts)
2. My dad has been on plaquenil for 30 years
Tue Jun 25, 2013, 07:00 PM
Jun 2013

Me, a year and a half so far. I'm off the steroids, and my body does fine with methotrexate- azathioprine was horrible.

I'm glad that my Dr doesn't even try to push the expensive ones on me.

The longer we live, the fewer things I'm afraid will work.

Warpy

(113,130 posts)
3. I agree, azathioprine is horrible stuff
Wed Jun 26, 2013, 10:00 AM
Jun 2013

I had to skip a couple of doses to be able to walk past the Costco food ladies. Trying to eat what I did buy was a real challenge, food was the last thing I wanted.

With MTX, all I had to do was lean over to pick something off the floor and I'd puke. I was considering changing my name to Ralph. Or maybe Buick.

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