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Don’t Come Easy in Oz
Dear Ed: I have been reading you site for many years and I am amazed by your energy and dedication! Congratulations on 10 years of producing and maintaining such an excellent site!
My P, like your website is still powering on. I had my second child 5 months ago and the P is the worst it has been in 20 years and was woeful throughout the entire pregnancy. The only option I had during the pregnancy was UVA for palliative care! It is strange as my P got better with my first child in the second trimester and didn't take very long to settle down after the birth. I must mention that the pregnancies (both good) were very different and my two sons are very different in disposition.
After 17 years of PUVA and UVA (I have type 4 skin so hopefully no skin cancers!) I have no choice but to go back on a drug. I have had minimal success with methotrexate and roaccutane, except for a very strange change in personality. So now I am going to try cyclosporine.
In Australia the government will not allow you to go on Raptiva (my preferred choice) unless you have failed three standard treatments, and they don't count roaccutane! So I have to do cyclo before the Raptiva which I think is very strange logic given you can't stay on cyclo for very long and the nasty side effects. But who I am to question government?
I also have tried Dr Michaels The Psoriasis & Skin Clinic treatments for four months. It is basically the Pagano diet, herbal supplements, tar shampoo and natural oils. Not much success for me. My suggestion would be read Pagano's book if you want to change your diet and see a good naturopath instead to build up your immunity. Forget the ointments and creams; they are a joke as they are just based on tar and oils that can be found in many other counter products at a much cheaper price.
The most interesting aspect of my care has been discussions with my health care advisors. After 20 years on this curse I have finally acknowledged that I have a serious life long condition, there is no cure but have to learn to manage and deal with it and get on with the joys of life (there are many even with P). Hard to remember sometimes when you are red raw, itchy and look like a freak!
Will keep you up to date with the cylco.
Thanks again for 10 years!
Ed’s Response: Thanks for the anniversary greeting, Hilde. It is hard for me to believe (sometimes) that I’ve been “at FlakeHQ” for a decade — unless I go through the exercise of inventory-ing treatments available to us when I started this site in 1996, compared to treatments available to us today. We’ve at least doubled the number of “traditional” palliatives and, if you try to count non-traditional, there’s many more. You’d expect to see that kind of increase in options over two decades. Or longer. It’s happened shockingly fast. (According to author and futurist Ray Kurzweil, whose most recent book is The Singularity is Near: When Humans Transcend Biology, our technology is advancing geometrically, not linearly, and few people realize how significant this is. This means instead of a growth sequence that would look like this: 8-16-24-32, our technology growth sequence looks like this: 8-16-32-64.)
I’m surprised about the government stance on biologics in Australia; but I suppose it’s motivated by the same consternation insurance companies express in the U.S. It all has to do with money. Not safety, not efficacy, not medical preference. Cash. Plain and simple. Some insurance companies in the U.S. want flakers to exhaust “established treatment options” before they will approve payment for the “less established biologics.” This isn’t hard to understand from a financial perspective: The biologics can cost 10 times more than methotrexate or cyclosporine or UVB therapy and yet have an “efficacy profile” that’s still emerging. (I remember how shocked I was shortly after Enbrel came out in the U.S. about the number of reports I was getting that it DID NOT WORK. I became one of those statistics, myself.) There will come a day when derms will be able to predict which of their patients will do well on Enbrel, and by that time the cost of the drug may have come down. When those things happen, our cautious insurance companies may change their policy and people may be permitted to use a biologic WITHOUT the travail of surviving methotrexate and cyclosporine first.
Meanwhile, be good and stay in touch! -Ed
P.S. – Cyclosporine was my first “miracle drug.” I hope you find it works as good for you, too.