New

[SEF1]

Hi, I have been looking for support and came along this website. I have Pansclerotic Morphea, and need a place for positive help, asking questions, and finding ways to live better. I feel that my drugs have been increased and decreased, and vice versa, over the past year and half with some improvement, but that's it. As the wonderful NHS staff are so busy it leaves little time for me to understand and discuss. Invisible diseases are difficult for family and friends to acknowledge or understand either, so am looking for different ways to feel less isolated with it. I want to feel empowered and not depressed if that makes sense. Thanks. x

[MilkMaid]

Welcome to the forum. I am sure you find it very useful. When you have a rare auto-immune disorder it is great to talk to others with similiar problems. It might be useful if you say what drugs you have tried or are currently on so that others may respond to any queries that you have. Mobility has been my main issue with morphea, constantly shrinking ligaments and tendons affecting my legs and arms, physio, regular exercise and yoga have been the most use in regaining some normality in my life. I hope that you find some answers in this group.

[SEF1 in reply to MilkMaid]

Thank you so much MilkMaid for your reply. I have been on methotrexate, ciclosporin and prednisolone for a year and half. Various doses. This is the thing, I don't understand what is going on in my legs for example, perhaps I have shrinking ligaments too, all very stiff. Do you think stretching etc helps? My consultant told me to be careful about exercise as it may stimulate the Morphea and make it worse.

[MilkMaid in reply to SEF1]

The one thing that is consistent with these diseases is that everyone reacts differently. For me personally, stretching has helped it certainly hasn't made the morphea plaques worse but everyone is different, when I have been unable to follow my usual routine I generally feel a lot of tightness and fatigue. Perhaps clarify with your consultant next time you see him/her?

[lonelyone]

Boy do I feel ya... Yep. 💔💜💓💙🙏😢

[Oscar_20]

Hi - I was diagnosed with Pansclerotic Morphea in February of this year and I'm being treated at the Royal Free Hospital. I'm on Methotrexate (22.5mg injected weekly), Mycophenolate (1000mg per day) and prednisolone (15mg per day). My lower arms/hands/wrists and lower legs/feet have been badly affected. My knee movement is severely restricted, but my ankles are the worse and my lower legs are very hard. I can't walk very far or stand for very long, so my usual position is sitting with my leg up. I'm semi disabled. Do you have the same symptoms? My elbows have definitely eased along with my left wrists but I'm seeing little improvement with my legs. It would be great to liaise/share experiences - I'm seeing the consultants this Thursday and can feed back after that.

Hope you are seeing improvements.