Backstory: Lonely in Cyberspace (June 2000)

Hi Ed. Still haven't managed to find anyone in PsorHeads chat room yet, I guess you lot are all sleeping across the other side of the world when I am wide awake—well awake anyway.

So, have been using this ointment for three months now and it certainly works better than anything else I've tried.

The label reads:

45x Lenovate cream
20x Coal tar solution
8x Salacylic acid
500x Epizone
Apply twice a day.

I use it on my scalp too and it washes out easily the next morning. It hasn't totally cleared my P; there are still tiny spots that break out if I don't keep using the stuff. I also had a really bad breakout recently when several things happened all at once and turned my world upside down. But I have always said this thing is very much stress related. Things are calming down now and so is the P.

Still taking 6 Methotrexate a week [15 mgs @ 2.5 mgs per pill -Ed] with no sign of liver damage yet.

It's winter over here now and I really am having to work at keeping myself warm this year. If I get cold, the arthritis kicks in badly so picture me in thermal everythings for a month or so before I trot off for my annual visit to the UK. My eldest son has moved over there now and is having a ball but that will make it harder for me to leave, I guess.

Anyway, I hope that the ointment recipe helps someone out there. We all know that no two of us are alike and treatment is pretty much hit and miss, but it may be good for one of you.

Meanwhile, keep smiling all of you and don't let the flakes get you down. -Hazel

*****

Ed’s Response: Thanks for writing back with the ingredients to the "yucky mixture" you wrote about last month. Sounds like something your doc has compounded from local prescript and OTC products. And he’s covering all the topical bases for P! Though elusive, I finally found Lenovate on the web and it’s a version of betamethasone topical corticosteroid. In the U.S. this is the active ingredient in Diprolene. Coal tar is, as we all know by now, an age-old application to fight plaque build-up and salacylic acid is probably the most popular substance used for scale removal. The Epizone is probably "Epizone-E," a South African OTC cream some folks use as soap. I’m only assuming the "E" means vitamin E, a generally accepted skin conditioner in many products in the U.S. This might help restore your skin after the battering it gets from the steroid, tar and acid. It might also be the binding agent for the whole concoction. I’ve heard it is difficult to get coal tar and salacylic acid to coexist and remain mutually effective—but I’ve also heard of a number of compounded formulations that accomplish it. Good luck with this. It sounds like your derm is truly committed to treating P. Many derms wouldn’t go the extra mile it would take to concoct your goop.

I received several comments in June regarding your suggestion that we schedule some chats on the weekends so that’s what we’ll do. I’ve not quite gotten my act together to do anything formal, yet, but let me remind all that ANYONE can schedule a chat on PsorHeads. Just post the date and time you would like to chat in the "Chat Appointment Book" forum. Remember times can and are confusing. Use... http://www.timeanddate.com/worldclock/fixedform.html 
...to see what your preferred local time will be in several other cities around the world and list them all in your post. For example, we are becoming adept everywhere in the U.S. at calculating our local time from "New York time," so that would be a good time to put in your post. However, the clock time of PsorHeads is U.S. Pacific Daylight Savings (or Standard) Time (3 hours earlier than New York), which you can calculate from the timeanddate.com website by looking up San Francisco or Los Angeles on the conversion table you generate there. I’d recommend using both New York and San Francisco times in your post in the "Chat Appointment Book."

I’ve gotten into the habit of checking the Chat announcement on the PsorHeads home page every time I visit (at least daily when I’m not on the road). The announcement always provides info on the next scheduled chat. So, Hazel and everybody else, don’t wait for me! Be proactive and schedule your own chats (and, if I can, I’ll pop in). -Ed

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