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Swelling Theory and Aquaphor Experience
from Marilynne in California
Re "Swelling": Mystery Swelling
Hi Ed: I'm one of the recent discoverers of this site and say bless you! I have had P for about 10 years. It started very gradually with me and just spread slowly. However, I have a NON-scientific insight about swelling (especially the legs and feet). When I have had a relatively "smooth" week, and begin another cycle of scaling, I notice that I sometimes (not always) have a severe swelling of my feet and legs. My legs are where most of my P resides. The theory I have about swelling has evolved over years of listening to different physicians talk about trauma and stress to the body and the body’s reaction to the trauma or stress.
When there is a part of the body being subjected to unusual stress or injury or disease, the immune system sends normal body serum to the site as a means of protection. The reason I believe this is true is that in my case, every time I medicate and have sunlight therapy and the P subsides, the swelling disappears. When the next major outbreak occurs, back comes the swelling. In my case, it seems to be a regular cycle. That's all I have to say about swelling.
One more thing, have any of you tried Aquaphor ointment on your P? My daughter, who does not have P, told me about the great results she was having on her severely dry and cracked skin. I tried some of hers on just one of my patches and it made a huge difference. After purchasing a jar for myself, I started using it on all of my major scaling and I couldn't believe the difference. It is quite expensive, $16.00 a jar at Wal-Mart in the Pharmacy, but definitely worth it for me. I hate using the steroid ointments because of the thinning of my skin. The Aquaphor ointment has made it possible for me to cut my steroid use by about 60%. A little of it goes a long way and my skin is soft and smooth for about 20 hours. It even loosens the dry scales like the Psorcon, Lidex, etc. do. Just thought I'd throw that in for what it's worth.
Thanks for being there for all of us who had just about given up hope of finding anyone who could understand what we go through. After reading some of the letters, I decided I have a great deal to be thankful for, compared with some of you.
Thanks for hearing me out, and keep up the good work. -Marilynne in California
Ed’s Response: Here’s the product site for Aquaphor. It reads like a simple emollient to me, and that suggests overly dry skin might be a trigger or at least an exacerbating feature of your P. (This web site says Aquaphor is good for eczema [a.k.a. atopic dermatitis].) Though yours is the first correspondence I’ve received about good results with Aquaphor, I’ve received other email reporting similar positive results from "Bag Balm" and other largely emollient products. One interesting thing I derived from the product spiel linked here is that Aquaphor might be a good agent for mixing with other compounds, like prescription corticosteroids when you need them. Check this out with your derm before you try it, if it sounds compelling (as a way to stretch expensive corticosteroids and enjoy safer dosages at the same time).
I’ve noticed swelling associated with my worst plaque flares, especially on my legs, too. And my PA-effected joints really swell. I think it all relates to inflammation and I believe you are correct, the body uses fluid in the inflaming process. -Ed