|May-June '06 | briefing | mail | interviews | articles | psorchat | psorchat review | don't say this | flaker creativity | flakers' jargon | other places | archives | send mail | ed dewke | search | acknowledgments | legal stuff | ©2006 Ed Dewke|
May-June 2006 Briefing
FlakeHQ Interviews: Jody Kim-Eng
If you’ve seen Fred Finkelstein’s documentary, My Skin’s On Fire, you will recognize Jody Kim-Eng from the cinema vérité segment recorded with her and her husband, Gene. Fred interviewed them in their home, with sequences showing them doing routine things. All the interviews in MSOF are good, but the interview with Jody stands out because she is so credibly open about what her life has been like with psoriasis.
It is difficult to accept that this is the strong co-founder and leader of the San Francisco Bay Area/Peninsula Psoriasis Support Network (San Mateo, CA). Inside of a decade, this is a woman who denied to herself that she had psoriasis but now travels to Washington, D.C. to lobby for more psoriasis research and better access to treatments.
I pursued an interview with Jody because I wanted to learn more about psoriasis support groups (I’ve never had the pleasure, myself). Like me, you’ll learn a lot about groups from the interview, but what you learn about Jody Kim-Eng will fascinate, too. On the evening I finished pulling it all together into the form you’ll read here, I sat back with this thought repeating in my head: And they say super heroes live ONLY in comics. Hah!
Ed’s Humira Experience So Far
I’ve finished three months on the biologic drug Humira and am happy to report my P-arthritis remains nearly unnoticeable. After a year on painful knees, this has been a sweet three months. Regrettably – but not unexpectedly – my skin’s not doing so well.
Throughout 2005, I was taking the biologic drug Raptiva – this cleared my skin but had no effect on my PA. Almost everyone who had written me about their experience with Raptiva said rebound was a problem when they stopped taking Raptiva. (This is the rule, not the exception, when potent drugs that palliate lesions are stopped suddenly, though individual responses vary widely.) I’ve experienced severe rebound several times and I will do just about anything to avoid it. I conversed with both my derm – who compelled me to try Raptiva – and my rheumy – who was urging me to try Humira. My rheumy was optimistic that Humira would work well on my skin, and it was almost a foregone conclusion that it would work well on my P-arthritis (however, at this point ANY improvement in my P-arthritis would have been a BIG improvement). Eventually, the two doctors and I agreed I should take BOTH Raptiva AND Humira for one month. This finally occurred from mid-January to mid-February this year.
I assume it was this overlapping of biologics that thwarted a more violent rebound from Raptiva. During those four weeks of using both drugs, my knee pain stopped. To be fair, I continued to use ibuprofen and Tramadol for pain, but I’m convinced the real relief was being delivered by the Humira. This has been confirmed more recently as my use of both ibuprofen and Tramadol has been reduced to “occasional.” Lesions are returning, but it has been a gradual process, one I’m reluctant to call a rebound.
At just about three months using Humira, it’s still too early to draw any conclusions. Of course, I’m hoping my skin will stop getting worse and start getting better — but what will I do if it doesn’t? Being joint pain-free is too good to give up lightly; I will be very reluctant to abandon Humira for something less likely to help the P-arthritis. So, if I must, I’ll probably explore something I can take WITH Humira that might help my skin.
Flaker Creativity This Update