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Drug-induced Lupus caused by Enbrel
from Christy D.

Hi Ed:  Another update from the astronomer! It's been an eventful year! In my last update, I told the story of my son Nathan who was born early after my kidneys started to give out. It was suspected to be psoriatic nephropathy and I was put back on a large dose of Enbrel (50mg injections 2x week). My psoriasis cleared, but my kidneys didn't improve. I started to have a lot of strange swelling in feet and hands and chest pain and difficulty breathing. Another round of blood tests came up with lupus. I spent a year on Enbrel and Plaquenil with no improvement. A visit to the specialists at the Lupus Center in Pittsburgh suggests that this is drug-induced lupus caused by the Enbrel.

So I have to stop the Enbrel for the sake of my kidneys. Next week I'll start CellCept, working up to a dose of 2.5g a day. I'm very nervous. I have truly severe erythrodermic psoriasis and psoriatic arthritis. Enbrel has made it possible for me to live again after a year of being bed-ridden. I really don't want to go back to the very low quality of life I had before if the CellCept doesn't work.

My son Nathan is now 20 months old and thriving. He is hard of hearing due to nerve damage from his premature birth, but he, my husband, and I are learning sign language as a family.

My PhD defense is scheduled for this spring and I have a job offer lined up, continuing to work on fabricating mirrors for the Euro50 telescope.

Hope everyone in Flake-land is well.  -Christy D.

*****

Ed’s Response:  First, let me start off the new year by acknowledging the contribution Christy D. has made to FlakeHQ over the past four years.  We have been truly blessed.  Here are our correspondence exchanges from first through 2006:

Now, back to you, Christy.  Have any of your doctors talked to you about an alternative biologic?  Raptiva or Remicade?  Both of these work on both the skin and joint P but have different specific protein actions than Enbrel. 

Perhaps your Doctors are recommending CellCept rather than Cyclosporine (both of which are immunosuppressants primarily used to counteract transplanted organ rejection) because CellCept doesn’t have as bad a rep for causing kidney problems? 

Sorry to hear about Nathan’s hearing problems.  Am hoping something might be done to improve the situation when he’s a little older.  In the meantime, he’s fortunate to be an owner of two intelligent parents that will go out of their way to learn a backup method of communicating!

I have every faith that you will obtain the job working on the “big ‘scope.”  You are so invested already.  Evidently you were born for two things:  One, to flake; two, to peer far, far out into our universe.  Finding a husband, having a son, corresponding with us — all that’s frosting on our cake!

‘Til next time!  -Ed

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