|Sep-Oct '08 | briefing | mail | interviews | articles | psorchat | don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewke | search | acknowledgments | legal stuff | Flake: Confessions of a Psoriatic | ©2008 Ed Dewke|
Enbrel Worked for Arthritis, Less so with P & the Importance of SLEEP
Backstory: Apprehensive About Enbrel Trial
Hi Ed. I hope you are doing well. Is this Old Home Month? It’s been a long time since I last wrote (May 2004, wondering if I should do the Enbrel trial) and I see a couple of people also wrote in after a long silence.
I did go on the Enbrel trial and I have been using Enbrel continuously ever since. I like how Steve W. organized his history so I’ll try to do the same for the benefit of your readers.
1990’s — Started with spots on scalp and graduated to scale over entire scalp. Developed spots on legs and spread to other body parts. Had bouts of arthritic pain, swollen joints in fingers, ankles, knees, hips, jaws. Used a variety of topicals and also did UVB treatments at home. I burned myself often from the UVB by forgetting to cover up the good skin. That made the P worse so I stopped UVB after a while. I also didn’t want skin cancer.
1996 — Started regular program of jogging and the arthritic pain was somewhat lessened but the P continued to get worse.
2003 — Everything crashed. My pain became unbearable. I could hardly move or walk. I had red thick patches/spots on every body part. Fortunately they were just mildly itchy or not itchy at all. I’ve been on a wide variety of topicals. Even tried Dead Sea mud to no avail. I started the Pagano diet and even received treatments from Dr. Pagano doing the wraps, massages, etc. The P got slightly better but my pain kept getting worse. If my condition was not at such a severe stage, I think the Pagano regiment would have been helpful. But my condition was just too far gone.
2004 — The P-arthritis became so overwhelming the skin psoriasis was just a minor inconvenience in comparison. The rheumatologist started me on 12 weeks of Methotrexate which took down the joint swellings but still left me with pain. Then I was on Bextra. The skin psoriasis was still real bad.
May ‘04 — Started with 50 mg/week of Enbrel. In 2 weeks, I was able to use the stairs without holding on. In 4 weeks, I stopped taking Bextra all together. I walked with stiffness but no debilitating pain. In about 2 weeks of Enbrel, dead skin came off in sheets from my feet. By June my feet were totally clear! But in Dec ’04, new spots showed up in greater numbers on palms & on feet.
2005 — While I still had spots all over my body, my arms and face became clear for the first time in years. In the summer of 2005 I was able to wear short sleeves! What a joy that was. I still had cramps, pains and numbness in my arms and leg, now and again but nothing like in ’03 and ’04!
2006 — The arthritis was mostly in control. My fingers ached now and again. But I walked pain free! The P was a different story. It started to get worse over time. I also went back to work and my P definitely got worse as a result.
2007 — My dermatologist convinced me that I’d do better if I resume my UVB treatments, so I did. The UVB did make the P lighter.
2008 — I stopped working. My P is much better. My feet are pretty clear save for some pink patches on my ankles. I wore sandals for the first time in many years this summer! I still have spots on my legs and elsewhere but they are much lighter in color and less thick. My finger nails are clear. My scalp still has P but the layers are not as many. I still have to wash my hair every other day or the scalp will get thick on me.
I have mostly kept up with the Pagano diet since 2003 — I avoid the night shades totally, cut out red meat and shelled seafood, eat whole grain as much as possible. If you want to lose a few pounds, this diet will do it. I can fit in clothes from my 20’s again and that was 30 years ago.
The key factor for me to keep P at a manageable level is SLEEP! When I was not working, I went to sleep late just because I could. So even with Enbrel, UVB, the Pagano diet and exercising regularly, my P would get worse. I usually sleep 8 hours no matter what time I go to bed. There were a couple of nights I went to sleep around 10 PM and my P miraculously got lighter in a day or two! I have noticed the later the bed time, the worse the P. Sleep is such a critical factor to help the body manage stress and I firmly believe stress makes my P worse. I really want to share this with your readers in the hope that they may benefit from it also.
Thanks for the forum and keep up the good work. -Samantha T.
Ed’s Response: Thanks for the update Samantha — and it’s good to hear from you again! Your emphasis on the importance of sleep is VERY interesting.
First thing I did was search on “sleep” from the FlakeHQ homepage and note the site had 97 (now 98) pages that contain the term. Only one of them — Pregnancy, Caffeine and Skintreat — relates P to sleep deprivation. Most of the remainder talk about P as a cause of sleep problems. The lack of apparent corroboration with your hypothesis is misleading and probably semantic — you do associate sleep with stress reduction and stress, as we all know, is widely considered a P trigger.
But, if you would, study the above triangle a moment. The arrows represent cause and effect, “cause” being the backside of the arrow, “effect” being the arrowhead side of the arrow. Explicated, the triangle says PSORIASIS (green word and arrows) causes both sleep deprivation and stress. This is what the vast majority of FlakeHQ mail containing the word “sleep” suggests. But STRESS (blue word and arrows) causes both sleep deprivation and psoriasis which, clinically speaking, is currently held true. And SLEEP DEPrivation (red word and arrows) causes psoriasis and stress — at least half of which is affirmed by Samantha in this correspondence. When I run into a pattern like this, one in which the causal relationships are literally interchangeable, I wonder if we’re not talking about three faces on the same thing. What is “the thing”? Errant immune system? Leaky gut? Blocked pathways?
If anyone knows the answer, please fill me in.
Meanwhile, Samantha, it sounds like you are doing the right things. Most importantly, you are keeping “up,” you are “keeping track.” You sound like someone who will pilot through the storms (flares, rebounds) with strength and grace. -Ed