Anyone else have Morphea

I was diagnosed with Morphea about 6months ago, I'm 52,, though looking back, I've had pigmentation problems for about 3-4 years but just put it down to starting the menopause, I just happen to mention it to the Dr on a visit one day, I've had a biopsy, and have just had my first phototherapy (PUVA) months of waiting... with a bath prior to the light therapy, it seems to have progressed very quickly my under arms are very tight and tethered looking, in finding it difficult to move my arms about, it's also on my back front tops of my legs, a bit behind my knees and in my elbow grooves, I've tried to read as much as I can about it, though I feel that there doesn't seen to be much written about it, I am now getting quite down about it as I'm a nurse myself and lead an active life, I would go privately but can't find Anyone local to me that specialises in it, any help greatly received. Thanks for reading Nikki

13 Replies

  • Have you seen a specialist or just a GP? Where abouts do you live? It sounds like you could do with going to a specialist in scleroderma for a full assessment. I know There are specialists in Manchester, Leeds and at the Royal free in London but the RSUK have a full list of specialists. I don't have morphea but my daughter has had linear from a young age affecting her limbs. As a child, She has had steroid and immune suppressant treatment because she was growing and it was covering her joints plus topical creams and it has been successful. Physio therapy has helped as well. It might be helpful to speak to the SRUK for some advice. Good luck.

  • I'm under a dermatologist but I don't feel he knows that much about Morphea, the first treatment is the light therapy, which I have just started, it's making it very sore though. I've been told it could help but no guarantees with it, I didn't find the steriod cream much help either. I do have a name for someone at spire Leeds, who I've been told is a specialist in Morphea I'm thinking of maybe going to see him. I have it quite severe under my arms making it painful moving my arms, tops of my legs, my trunk is covered with very dry rough shiny skin, I do keep doing stretches to keep me supple but I feel like my skin is going to split. Thank you for your reply

  • Dr goodfield I believe is a specialist in Leeds my daughter has seen him . At the moment she sees dr Taylor in the paediatric scleroderma clinic at Leeds and she covers adults and children if that helps

  • Thank you for your help, I think I will ring spire in roundhay, and go privately, see how I get on. Thanks again

  • I used to live near Leeds, the dermatologist I saw was Dr Mark Goodfield at Chapel Allerton, he is an expert in Scleroderma and would highly recommend him, very kind and sympathetic.

  • Thanks for your reply, that's the name I've been given I thinkI can only see him privately as I don't live in leeds so therefore don't think I could see him on the nhs but I'll look into it, thank you

  • You should be able to choose ESP if you don't live far away - we are not from Leeds but get seen there as it's the regional centre and when she transitions they said she will stay on there rather than go to our local hospital

  • What's esp?? I'll look into that, thank you

  • especially (abbreviation !) good luck!

  • Oh durrrr lol, read that wrong, blonde moment, thank you

  • I usd to live in York and saw the consultants at Chapel Allerton on the NHS. It is a research centre for Scleroderma, so they will definitely see you, but it may be quicker to see him privately at least initially. Best of luck.

  • You sound exactly like me Nikki although mine only started last November diagnosed as dermatitis, paid to go private in March when I got the diagnosis. It has galloped tho as I've got same areas as you plus front - my boobs look lovely and perky because they're being held up by the tight skin. Also got a linear stripe up the inside of each arm. I started in March with pulsed Prednisone for 3 days then Methotrexate, I've had 8 doses so far and skin is definitely a bit looser. I've sent you a pm for if you want to chat. I have been feeling like the only one with this.

  • Hi Nikki, I too suffer from Morphea, patches can appear overnight. Some are grey and soft others white and hard. I sympathise with you as these patches/areas suddenly appearing can be very depressing. The only thing i've found that helps the skin a bit is Aveeno cream - I've tried most creams. Bath emolliant helps a bit too. Keep stretching & keep mobile - it does help. Good luck

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