Enbrel Works for FlakeHQ’s Resident Astronomer
from Christy D.

Hi Ed! Finally a happy update from me — the Enbrel works! One of my doctors has heralded it "a godsend, just a godsend!" since it has worked such a transformation. I feel almost normal now. A year ago I was close to 90% covered with very thick psoriasis and had such bad arthritis that I struggled to walk. I slept on the couch rather than in the bedroom since I couldn't manage the stairs. I applied for disability.

I was living on the campus of the small college where my husband was teaching and commuting(!) to London where I was working on a PhD. The rural campus community was not understanding of my condition and I became their version of the Hunchback. My neighbor's children would even throw acorns at me when I emerged from the house. I was on large amount of methotrexate (enough for the hair to start to fall out) and cyclosporine. I developed pneumonia once. I gained fifty pounds. There were many days I couldn't imagine living like this much longer.

Still I kept soldiering on. The nearest derm and rheum were a two hour drive away. I managed to drive myself once a week. I pulled myself onto the international flights and survived telescope meetings.

Finally I got approved for Enbel, which I took with Neoral [cyclosporine] for a few months. I improved for the first time in years.  The steady decline stopped. I no longer feared I would die of psoriasis — how embarrassing! Now I've stopped the Neoral and walk quite well. I still have a lot of psoriasis. And the telescope is coming along beautifully — you can see it at:

http://www.astro.lu.se/~torben/euro50/ It will be the world's largest when completed. We've moved to a better university and no one is cruel to me.

The point of my message is for those of you who are at the bottom, just keep trying. Just make it through one more day — keep researching, keep finding doctors who will work with you. I know what it is like down there. When you do find something that works, you'll get out of the pit but you'll take the strength you developed down there with you.

Thanks for indulging my soapbox use, Ed.

-Christy D. (PhD Candidate in Physics & Astronomy, London Observatory, The University of London )

*****

Ed’s Response:  You can’t know how happy I was to get this email, Christy, and read your good news about improving on Enbrel! 

Readers:  From the FlakeHQ home page, enter “Christy D.” — in quotes — in the search field to follow her story from undergraduate single to married astronomer working on the most interesting telescope in the world.  If you want to learn more about the telescope, follow the link in Christy’s email, above.  Here, however, is the picture from that link:

http://www.astro.lu.se/~torben/euro50/

I was interested to read that when you started Enbrel you also took cyclosporine for a few months.  Twenty-two months ago, when I tried Enbrel, not too many people were trying this (at least not that I or my derm were aware of).  Therefore, we phased me out of the cyclosporine before I started the Enbrel.  My concern that this would put my body in a rebound state at the same time it was trying to react to Enbrel proved true.  I actually got worse.  For the first three months on Enbrel it was as though I was taking nothing at all — and some readers will remember that for awhile I did stop taking the Enbrel while I was being treated for testicular cancer.  Had I just stopped the cyclosporine I would have expected the rebound to be just as it was. 

Any day now I should begin a regimen on Raptiva.  If that doesn’t work, I think I may try Enbrel again.  Another thing that’s been learned since my first round on Enbrel is that results for some will come faster if they start at 100 mgs per week instead of 50.  I think that might have made a difference in my case, too.

Keep us apprized of your progress, Christy.  We are pulling for you.  -Ed

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