Hello, I'm in my 5th year of MF and thought I would share my experiences with you so that existing and newcomers to this disease may find my information helpful.
I am 64.
There seems to be few resources in the UK where people chat about MF. Looking through the chat room here at Cancer Research I see relatively few posts and mostly quite dated. I guess that is because MF is not so common and in many cases people can live with MF reasonably well and with few if any changes to lifestyle.
My MF was clinically diagnosed as repeat biopsies were inconclusive. I'm told this is not unusual. I have had 4 sessions of PUVA treatment which, at the time, I respond well to but MF reappears after about 6 months. Again I am told that this is to be expected.
In between PUVA I use Aveno Lotion as a daily moisturiser. I find this works well for me, is easy to apply and I get it on prescription without any problem. My consultant would prefer me to use a thicker moisturiser but I find this harder to apply and more damaging to clothes and I don’t really see any improvement over Aveno so I am sticking with that for now.
I find that my MF is very cyclic in its severity. About once a week I will find my skin very blotchy (sometime with raised areas), on these occasions I stop Aveno and apply Dermovate. Normally one or two sessions of Dermovate (that is one application per day for two days) is all that is needed before I can resume my Aveno.
I always apply Vaseline to my face (around my eyes), behind the ear and to my genitalia and groin. This works very well as I was getting soreness in these areas but the Vaseline has cured this completely for now.
Sometimes, I would say around once a fortnight, I get very sore around the torso after applying the Aveno – it feels like needles attacking the skin but it passes after a few minutes.
Less often, say once per month, I get crazy itchy! Especially my back!
In summary I feel lucky that my experiences so far with MF have been easy to manage and I can lead a completely normal life. I see my consultant every 6 months to keep an eye on the situation. I suppose I would say that my MF is slowly worsening, I feel the points I raise above were occurring less often a year ago. I declined an offer of another session of PUVA on the basis that my total times in the light room are nearing the lifetime limit for me so I plan to keep this available for the future should things get much worse than they are.
That’s me! I hope you find this useful and I’d be pleased to answer any questions about my experiences to date.
