from an email: 4 exciting new treatment options for Lupus

[NightWatcher]

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

[Warpy]

1. Thalidomide has been a drug of last resort for a long time

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]

2. My dad has been on plaquenil for 30 years

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]

3. I agree, azathioprine is horrible stuff

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.