I'm new to this forum. I had a stem cell transplant as treatment for a blood cancer) almost three years ago and have Graft versus Host Disease (GvHD) affecting various parts of my body, including scleroderma. As far as I know, it is pretty much the same as scleroderma that is not part of GvHD.
So far, it is quite mild and has not affected the external skin or internal organs, only internal soft tissue (tendons and muscles), meaning I find it hard/uncomfortable to flex my limbs - walking fast, taking clothing on and off, sitting on the floor, cross-legged, etc. are all difficult.
I am being treated with ECP (extracorporeal photopheresis) and now weaned down to only 7mg Prednisalone a day. I'm at Nottingham City Hospital (Haematology, rather than Rheumatology, due to the blood cancer).
I had noticed some joint aching (elbows and knees) on waking first thing, while still in bed, but usually that disappeared once I was up and moving. But yesterday, I went on my bike for the first time this year, after a long period of not cycling at all. While my legs were fine, I had a lot of aching in my elbows very soon into my ride - less than a couple of miles, maybe even after a few hundred metres - I can't quite recall. It bothered me as I really want to get back into cycling, but if I experience that each time I cycle, I won't want to.
I've yet to raise it with my consultant, but just wondered if this is common and what people use to lessen it? I saw somewhere that swimming might help. Any other ideas welcome.