another email from another derm- some of you guys that cant see dermatologist as much i thought this might interest and help you understand the condition. happy reading-
I have to admit I am at a loss on how to explain what is happening to you.
The tests you emailed do not point to anything specific
even the skin biopsy showed very little inflammatory infiltrates. I am just wondering what they biopsied? your parents told me that the initial change observed is the whitening of the lips when it gets wet, followed by tiny vesicles which later crust and become exudative. If this is the case the skin biopsy should be done on the tiny vesicle stage. If you decide to come to the Philippines I would suggest that you go to Dr Jasmin Jamora (her clinic is in Manila) as I would need to send her the skin biopsy if I do it anyway.
However before we go that, I will try to explain how I see your condition
1. there is a trigger (as of now unknown may even be auto immune)
2. the outer most layer of your skin is the target so it peels off and develops tiny vesicles
3. they then rupture leaving wounds which secrete a lot of serous fluid
4. This serous discharge is full of inflammatory chemicals which in huge amounts also will act on and liquefy adjacent normal skin and new skin which is trying to grow
5. the crust is a very good culture medium for bacteria and fungi which will delay healing
the problem is that the serous discharge aside from containing inflammatory chemicals also contains growth factors which is necessary for healing, so we need it but not in excess
the topical medicines I suggested are to facilitate re-epithelialization, to make the new skin grow faster and cover the wound to stop it from forming more of the fluid.
Most of my patients where just mild forms of cheilitis and heals in 2 weeks.
My patients with the severe lip erosions and crusting where usually Steven Johnsons or erythema multiforme patients (severe drug eruptions involving the mucosa). And they respond rapidly to either Mebo or Solosite.
I was reading up on Fuchs syndrome, a form of erythema multiforme involving crusting of the lip area. I cant access the journal where it was reported that the patients responded to oral Zinc supplementation. So i have no idea yet what the dosage is. This is one avenue we can also try.
The article on calendula (plant extract) sounds promising but I dont know how you can get the extract you can try asking the pharmacist where you get your medicines from.
Cyclosporine is an immunosuppresant much like a steroid but more focused. It will control the inflammation and hopefully stop the crusting. However if we do not identify the trigger it may still recur.
I hope this helps. I will try to find the Zinc dosage you could try that too.