I endured PLEVA and then PLC from age 16 to age 35. It comes and goes for no particular reason. Counting spots and ulcers and trying to figure out patterns is scientifically sketchy. Because they appear and disappear spontaneously, you can make a lot of false correlations and drive yourself batty. Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective? I spent thousands of dollars on that junk before a new dermatologist informed me that the ONLY scientifically solid knowledge was that sunlight was an effective treatment, and the way they stumbled on THAT was observing patients who returned from beach vacations with spots in the bathing suit area but not in the tanned area. "Medical science" is truly a contradiction in terms. She saved me thousands of dollars more. Or rather, I spent my money on tanning salons instead of doctors, with excellent results.
It comes and goes for no particular reason.
This is what all autoimmune and atopic diseases do, wax and wane, idiopathically = spontaneously and for no known specific
Counting spots and ulcers and trying to figure out patterns is scientifically sketchy
I thoroughly agree, (and so does my derm with regard to counting spots in any skin disease, lesion patterns in some diseases are important) This is often done by some derms to see if the disease is reducing whilst on medication, but as you say it is a very unreliable way of evaluating disease activity.
Doctors will give you all kinds of creams and pills, and the medicine may appear to work because the number of spots goes down. Then the spots get worse, or the PLEVA changes to PLC. Did the medicine stop working? Or was the medicine completely ineffective?
You have explained what the meds do exactly, they control
it! That is the key word. Unfortunately the predisposition in ever having these abnormal immune responses be they autoimmune or atopic, is a part of you and always will be.
It is a certainty that uv light can help many skin conditions, but for some (with other conditions) the sun actually makes some others worse, even exciting the condition as in my own case.
My recent post regarding vitD. http://www.skincell.org/community/index.php/topic,23891.msg298508.html#msg298508
I am just looking through a load of info here on uv light for this condition, and the most recent I have found so far on UV light is this ...
Accepted for publication:
28 December 2007
Background/purpose: Narrowband (NB) UVB (NB-UVB) phototherapy has recently demonstrated high levels of efficacy and tolerability in a variety of skin diseases. The purpose of the present study was to assess the efficacy of NB-UVB phototherapy in the management of pityriasis lichenoides (PL).
Methods: The therapeutic response in 31 PL patients (23 pityriasis lichenoides et varioliformis acuta; PLEVA, eight pityriasis lichenoides chronica; PLC) treated with NB-UVB phototherapy between 2000 and 2007 was assessed.
Results: NB-UVB treatment led to a complete response (CR) in 15 out of 23 PLEVA patients (65.2%) with a mean cumulative dose of 23 J/cm2 after a mean number of 43.4 exposures and a partial response (PR) in eight patients (34.8%) with a cumulative dose of 15.6 J/cm2 after a mean number of 32.3 exposures. NB-UVB treatment led to CR in seven out of eight PLC patients (87.5%) with a mean cumulative dose of 18.4 J/cm2 after a mean number of 45.8 exposures and PR in one patient (12.5%) with a cumulative dose of 9.1 J/cm2 after a mean number of 19 exposures. Relapses occurred in four PL patients within a mean time period of 6 months.
Conclusion: NB-UVB therapy is an effective, safe and practical alternative treatment modality for the management of PLEVA and PLC.
I have a couple of others concerning the results in children , but one was 2003 ,and this one was concerning other skin diseases in children and both in fact raised similar concerns.
We conclude that narrowband UVB phototherapy is a useful and well-tolerated treatment for children with severe or intractable inflammatory skin disease, but concerns remain regarding long-term side-effects.
yet another states it should only be used on children when there has been poor response to other treatments.
PS sorry I didn't realise it was so long!