|Nov-Dec '05 | 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 | ©2004 Ed Dewke|
Esters: Her Miracle
Dear Ed: I have written to you a couple of times about my success with using flax and borage oils [see Flax & Borage Oils Still Working — 10 Months]. They helped me for a while but last August I had a flair up that began and seemed to have no end. It was at least 80% coverage and still migrating, 105 degrees outside and the most constant pain I have been in ever in my life. My husband and I started looking for new information and came across info on Fumaric Acid Ester (FAE). FAEs have been approved in Europe for many years. We found a Dr. here in the USA who had been using FAE for 9 years and had suffered with severe psoriasis for 40 years. He remains clear today on a low dose. He told us that Biogen was in clinical trials with FAEs and that it could be available by 2007 in the USA. 2007 seemed like a lifetime away for me so within a week I had blood and urine analysis done and took it to a Dr. in Germany to see if I could get help.
The trip was the most painful ever, I was making trips to the bathroom every couple of hours and keeping my skin covered with olive oil to keep from cracking. Thank God the temperature in Germany was 75 degrees when we arrived. I met with the Dr. who was wonderful with me and he started me on FAE. In the first week after arriving back home the hot red flaring left my body and my skin temperature became normal. My skin slowly cleared and within one month I couldn't believe how much better it looked and felt. It brings tears to my eyes to think of this because it was such a painful time. I told my husband "If this doesn't work, get me a gun!" I was only half kidding!
Every month I get blood and urine tests and the results have been great! After 6 months of treatment my skin was clear but I still had all of the scars and some were very bad, particularly on my legs. I said to everyone, if this is as good as it gets, I'll be very happy. The local Dr. here told me that they would probably fade and would continue to heal, he had no scars left. He was right! My scars are completely gone and my skin remains clear after more than a year of treatment. The Dr. in Germany has now cut me back to a low dose of FAE and I have not had any psoriasis return. I will continue to get regular blood and urine analysis. The side effects for me have been very mild. At first I flushed a little for a few minutes after I had been on it for a couple of weeks. I had a little upset stomach when the dosage was upped but I was able to get that under control by making sure that I took my pill at the end of my meal and drank a little milk or soymilk instead of water. Now I flush every once in a while, my ears get warm and my chest gets redish.
I hope that Biogen will get this FDA approved soon so that many others who have severe psoriasis as I did, could possibly be helped. I will keep you posted on how I am doing, my life has changed dramatically! I have the best husband in the world, he loved me at my worst and helped me cope during the worst times. He understood when I just couldn't face the world and dropped everything for a chance for me to have a better quality of life. Ed, I thank-you so much for this website. I think I have read most of the letters in the archives searching for hope. Well, I am off to Ireland today for a lovely week! I will be taking my husband back to the town that my family came from and enjoying a comfortable flight! It is wonderful to not have the limitations in my life anymore and I wish the same for everyone who suffers the heartbreak of psoriasis. Best regards, -Erin
Ed’s Response: Thanks for this report, Erin. Fumaric acid treatment and fumaric acid esters have cropped up several times in correspondence here (search on “fumaric” from the home page to review the correspondence), but you are the first correspondent to provide such a detailed success story.
Most of the research reflected in comments at FlakeHQ.com has been conducted by Dave W., proprietor of Dave’s Psoriasis Info (a.k.a. PsorSite) and his exhaustive (though now somewhat dated) perusal of the literature is summarized here: http://www.psorsite.com/fumaric.html. When Dave wrote this he speculated there probably would NOT be any serious attempt to get FAE (fumaric acid esters) approved in the U.S. for psoriasis because it’s efficacy and safety profile was too similar to methotrexate (MTX), which is now well known and oft prescribed in the dermatologic community. (Why risk a new medicine that performs so similarly to one you’re already comfortable prescribing?)
I don’t know the particular’s about Biogen’s current trials, the nature of the FAE product, or where they intend to distribute, but the fact that the trials are going on suggests movement away from Dave W.’s status quo.
I hope some FlakeHQ readers will ask their dermatologists about FAE therapy. Knowledge about it may be more widespread in the U.S. than we suspect.Meanwhile, your success is a lighthouse shining brightly over our community. Thanks again. -Ed