Just looking for others with premalignancy that won't go away on lips. I am a woman but aware that most with actinic cheilitis are men. I was diagnosed by a skin cancer expert 2 years ago and have tried Efudix at regular intervals and also Imiquimod. My dermatologist says I will probably have to use this cream at 6 monthly intervals for life. But presently she's trying me on short sharp bursts of twice daily applications.
She has explained that it presently only exists at cellular level so she can't remove it. Also she's explained that the risk of it turning into invasive SQC in my mouth is quite high if we don't keep it in check. The problem is that it has so far never been in check - it just carries on responding to the cream and my lips are knackered and horrible after 2 years of using this cream.
As I"m also immune-suppressed for autoimmune diseases I seem to be now finding the cream makes me feel wiped out and I'm good for not much while I'm using it. I had to stop Imiquimod because it made my autoimmune diseases flare up as if I had severe flu. I try not to let it get me down too much and obviously I don't want invasive SQC but the thought of continuing to use this cream at regular intervals for life, especially as my lip seems to be getting worse not better, is rather depressing.
My dermatologist is an expert and I know I'm in the best possible hands but she is also very busy and I can't see her face to face presently because I'm shielding and the risk of Covid is too high. She phones often to check up on me and I think she's becoming concerned that my lip so far never stops reacting to the cream. She has thought about using a Vitamin D cream as well to heighten the response but as it's on my lip she's also concerned about how I will cope.
So I'm here looking for others who have Actinic Cheilitis ie only on the lip to see how you have fared with treatments and how it's worked out for you.
