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Feedback and Advice on Biologics
Hey Ed: It's been over a year since I chimed in and now is as good as any. I am a long time follower of yours (Anti-CD11a Trial Sparked 3-Day Migraine and others).
Since coming of the ineffective, intramuscular Amevive, my Psoriasis has been kept in check thanks to Enbrel. It looks, however, that I am as good as I am going to get (90% clear). No real side effects so I am pretty happy. Don't have an insurance problem either at this time so all seems well.
I wanted to chime my response to two of your e-mails in the May-June update.
The first one is Abbie S. (Appropriate Attire for a Young Ms. Flaker). After reading a few of her emails she sounds just like me. She was asking for places to shop for professional attire. While yes, I wish that I could wear sweats to work, I have to wear "professional" attire, being a public accountant. The trick is finding clothes that make you comfortable with your condition. When I have my worst flares, I tend to wear more long-sleeve sweaters and blouses to cover my arms. Most times, however, I just say "screw 'em" and wear what makes me comfortable which could be a short sleeve sweater. I have found in my career (going on 15 years now), once people understand your condition, they are more sympathetic to you than grossed out by your appearance. Finding the clothes can be difficult (especially with such awesome trendy styles :) ) but also in the price range you can afford. Just starting out can be difficult because some of the better clothing stores are very expensive (especially blouses which can be worn with more than pants sometimes). You can get reasonable (non-revealing) clothes at places like Dress Barn, Van Heusen, and Land's End. The more high-end clothes can be found at Jones of New York, Casual Corner and Kasper outlet stores. Looking at Outlets On Line, there are several outlet malls in Washington that might be near her. The other thing I recommend is a good dry cleaner. Inevitably, you will scratch too hard or get some type of ointment on those clothes and a good dry cleaner can get the stains out.
The second individual I would like to respond to is Ben K. (From Lights and Topicals to a Biologic – Maybe). Being from Chicago, I have had relationships with MANY (about 12 and some I don't even remember their names) dermatologists. What I am finding with the derms in Chicago is a strong push directly into Biologics. Over the last 3 years, I have seen 4 different derms (got to love that) from 3 different hospital systems in Chicago and every one of them pushed the biologics without Methotrexate first. The first one was Amevive — pain to go to the doctors office all the time. Now I am on Enbrel. The advice I give to you is have an idea what the different drugs do and make sure that you take that knowledge into the doctor’s office with you. Know what you want but be willing to hear them out. I actually went in hoping to get Remicade and now I have been on Enbrel for about a year. I find that when I went in with a basic understanding of what the drugs do, the doctor can fill in all the holes.
Well, Ed, as always, great site and keep up the good work. It's 1:30 a.m. and I’ve got to finish working and go to bed.
I'll try not to stay away so long next time. -Kelly Z.
Ed’s Response: Always a pleasure to hear from you, Kelly! Thanks for the informed advice to Abby S. and the good advice to Ben K. Your researched ideas for Abby made me jot a few notes — my wife loves clothes for her birthday and I never know where to shop, so you’ve given me ideas!
With regard to the biologics, I concur totally: the more you know going into the doctor’s office, the better off you are. To that end, the “systemics medicine” page at the National Psoriasis Foundation web site is a great place to start when you are thinking about biologics or other meds that attack our problem from the inside out. Most if not all of the manufacturers of systemic meds for P have web sites devoted to their product(s) and these are other good sources of information — just remember to read the fine print stuff, the “prescribing info,” and write down questions to ask your doctor. (One word of caution about reading “prescribing info”: The FDA is strict about making pharmaceutical companies publish a list of the adverse reactions reported during their drug trials. Pay attention to the percentages of patients who experienced these reactions. Some of them are highly unlikely. Also be careful not to jump to conclusions about so-called ‘contraindications,’ or preexisting problems that might preclude use of the drug. Some of them are truly problems, others “might be” but haven’t been thoroughly studied.)Do stay in touch Kelly! -Ed