Lymphomatoid Papulosis & Mycosis Fungoides

[thelassie70]

Hi,

New to here and just want to ask if there is anyone else out there who has Lymphomatiod Papulosis and Mycosis Fungoides?

It would be great to hear from anyone who has one of these conditions or like me, both!

Thank you

thelassie70

[EMANRESU]

Hello thelassie. I was diagnosed with Mycosis Fungoides in 2005 and given steroids (topical and internal), various different emollients and antihistamines and then a few treatments in a lightbox. With no signs of improvement I requested a referral to St Thomas' Dermatology Dept (London) and following examination there, the consultant sent for the original biopsies taken at the local hospital. Eventually, St Thomas' consultant wrote to the effect that there had been a misdiagnosis and that I had some other kind of dermatitis (unspecified). Should mention that there was once a Mycosis Fungoides "social" website but that ceased which was unfortunate because it was helpful following other folk on their treatment paths. Also, Mycosis Fungoides is now referred to as Cutaneous T-cell Lymphoma but I'm not sure how, if t all, that relates to Lymphomatoid Papulosis.

In the interim, having decided that NHS treatment (creams, steroids etc.) was not helping, I have tried many alternatives - modified diet, Weleda skin creams among many others , lots of different supplements, herbal teas, meditation with "healing" music and even a qualified anthropocentric medicine practitioner (ref: Rudolf Steiner's work).

All this, to say that I have no answer for you!! Currently my skin condition is so bad it is difficult to wear clothing or concentrate on anything except the incessant itching and soreness. You will know that skin conditions are very "individual" i.e. I am a thin-skinned person whereas my sister is thick-skinned (enough to break injection needles!) When i looked at a website about skin conditions I found over thirty pages of them with about 50 conditions on each page!! I am 77 and a friend in Australia developed "eczema" when in her 80's. Fortunately she has been able to get rid of it - she mentioned using flax seed oil.

That hasn't worked for me but if you can, keep trying anything and everything if your skin condition doesn't respond to the current medical treatment.

gillian

[heatherstev in reply to EMANRESU]

Hi both, The paucity of replies exemplifies the rarity of the disease and the difficulty in getting communal support. If there are any interested parties out there, post and I will relay my experiences with this disease. But for everyone one message "Beware Steroids" visit ITSAN before consenting to there use.

[IzW25 in reply to heatherstev]

Hi Heather,

I am a little late to the party as only just joined HealthUnlocked, but I was diagnosed with Lymphomatoid Papulosis around 8 years ago in my late teens. Since it has improved and I do very little to manage it. I have been told how rare it is, and this accounted for the fact it took years for me to get a diagnosis, and eventually radiotherapy on the out of control lesion on my wrist.

The reason I am replying is because I have had other health issues lately, fatigue and angular cheilitis for nearly two years now. I've had all tests done that the doctors can think of and they have blamed it on IBS. In a desperate bid to try to solve these problems I have decided to stop taking my daily over the counter antihistamine, which I have taken daily for the past 8 years to relieve the extreme itching I get all over my body. Since stopping taking this I have felt more energetic, less fatigued and my lip condition has improved. However certain times of the day I itch myself red raw and cannot stop. If I don't itch my body actually hurts and the overwhelming urge to itch is too much to resist. After reading the comments on here about a link to Mycosis Fungoides I have googled the symptoms and found itching is the most common. This has never been mentioned to me before. I am seeing the dermatologist next week so will mention it then.

The doctor I saw at Manchester Christie Hospital was brilliant and he printed off some fact sheets on Lymphomatoid papulosis for me, however any additional information you have to offer would be gratefully received.

Thanks for sharing and for your insights and experiences.