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Forty-Six Years with P
from Mary B.

Note to Mr. Dewke and Flake site, September 13, 2004 :  When I get down and out, I log on to your site and find solace. 

P covers 85% of my body.  For years I was very lucky — I covered most noticeable lesions with long sleeves and tights.  However, over the last two years, the big P attacked my face and hands, making life more difficult. 

I've been an experimental patient in the finest facilities from NY to California . Seems I have very high natural cell multiplication rate, coupled with great resistance to all medications.  Started with cortisone shots in my head at age 12, then used tars and all the derivatives.  I was one of Massachusetts ’ General’s experimental patients with UVB ... Used methotrexate first in the 70’s and then again on a very intense regimen in the late 80’s — for a total of 10 years.  It wreaked havoc on my  intestinal tract — which never really recovered. 

I've done it all.

Right now I’m going through cataract surgery as a result of long-term steroid use.  Numerous basal/squamous cell lesions have been removed from all parts of my body. Presently I’m waiting to hear if my insurance will cover Enbrel. I was surprised to hear that you, and others, have not seen results you wished for.  Right now I'm at Scripps in San Diego — my derm (a wonderful fellow) says he's experienced a very high rate of success with Enbrel.    As you can imagine, any hope is “on-hold.”  If relief comes, great, if not, I’ll continue to persevere.

I'm 58, female, had the big P for 46 years, and am searching for a portable vacuum to carry with me.    I'm seriously thinking of starting a “support group” in the San Diego area. Do you have any experience with same, any thoughts on the subject (other than NPA guidelines), any advice?

Your thoughts are appreciated.  Many thanks, -Mary B.


Ed’s Response:  Mary, if anyone has earned the right to clear completely on Enbrel, it’s you.  I’m hoping very hard that your insurance will cooperate and that your derm will recommend a starting dosage of 100 mgs a week (two 50 mg shots per week).  But remember, if Enbrel doesn’t work there are others to try.  Enbrel didn’t work for me — but I’m not ruling out another attempt at it.  I was unable to try Amevive because of low T-cell counts.  Now I’m waiting to hear if I can start using Raptiva.

You wrote about using the systemic methotrexate over a decade and now suffering the consequences.  I may be right now on my last course of cyclosporine — my dangerous systemic of choice.  For me this drug has always been the only one that really works.  I’ve never been able to use it for more than eleven months, though, because it raises my blood pressure.  As I’m already using a powerful blood pressure medication, when cyclo makes the pressure raise you know it’s causing a very strong adverse effect on my cardiovascular system.  But the point now is the cyclo’s no longer doing its good thing for my P.  I resumed taking it in June of this year, after it became obvious my T-cell count was not going to rise quickly and allow me to try Amevive.  My derm and I agreed I would stay on the cyclo only until I received approval for Raptiva.  In July the cyclo stopped my flare and started to reverse it.  But it has been unable to clear my hands and nails, knees and elbows, buttocks, back and stomach.  In all these places I have recalcitrant lesions adding up to about 3-4% of my body surface.  Also, the P-arthritis in fingers and right knee is raging.

I continue to take the cyclo because it’s keeping the P at the 3-4% level and I don’t want to be in the middle of a flare when I start Raptiva.  But if this is as good as cyclo is going to be for me in the future, I’m not certain it will be worth the risks.  (My blood pressure is on the rise now and I am monitoring two or three times weekly.)

I’ve never ran or been a member of a local P support group, though I did consider starting one back when NPF still helped with mailings and such. Perhaps others who read this and have been involved in support groups can offer suggestions?  I’ll make sure you receive whatever I receive, Mary.

Meanwhile, fingers are crossed about your insurance covering Enbrel.  Please do let us know how things turn out.  -Ed

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