CTCL - Mycosis Fungoides - excessive itching/pain

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Hi All,

Some may know me from the other group. Recently Diagnosed with Mycosis Fungoides. 

I have a issue of itching and really extreme painful skin. It's not everyday but today is a bad face day (it's mainly my face)

  1. Anyone else have the same sort of symptoms? Any help at all on how to stop it.

Thanks Jess Blush

  • Hi Jess  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

    First, sorry for not getting back to you sooner but I had not received an email notification about your post.

    I was diagnosed way back in 1999 with Mycosis Fungoides so understand the challenges of this journey very very well.

    The description of your initial presentation sounds oh so normal for MF. I am assuming that you are under the care of a Dermatologist…… these are the people who will recommend the starting point for treating this…… treatment can at times be very specific to the person, you won’t be able to easily stop this completely but there are first line treatments that can control this by using various levels of creams.

    What have you been given at the moment to treat this.

    Always around to chat and support as best as I can.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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