How symmetrical is your skin involvement?

[cowhide]

I have limited systemic sclerosis and to date although I have some skin tightening on my hands and fingers and to a lesser extent, my feet, I do not have sclerodactyly. The back of my right hand has always been a little tighter than my left. With the recent heat, my right foot and ankle is now noticeably swollen and tight compared with the left - can't pinch any skin at all on the top and the right is also very itchy - first time I've had this. My right hand is also more swollen. So how symmetrical is your tightening or is this uneven left-right involvement common?

[Nikki246]

Mine is mostly my left side

[cowhide in reply to Nikki246]

Is that limited systemic sclerosis? I know uneven skin involvement in some types is more common.

[Jontee180]

I have chronic systemic sclerosis my stomach is really tight and it's in my thighs and ankles now it's restricting my breathing a lot have been on numerous drugs but not one has slowed it down have been put on retuximab again as last time I had a reaction to it as I had a reaction to thalidomide also running out of ideas now any suggestions

[dianekjs in reply to Jontee180]

Jontee, are you under the care of a scleroderma specialist, and have you looked into HSCT? It may be a consideration if your SSc is progressing aggressively.

[Jontee180 in reply to dianekjs]

I'm under consultants at christies as got sclersderma through gvhd from bone marrow transplant as i have cll leukaemia which is ok but they r specialist as they get different types of gvhd it did stop for a while but started getting worse last few months there is a new drug was hoping to try that but trying retuximab hope it slows it down I know they can't cure it but would be nice to be able to walk or do normal things without getting really breathless thanks for the reply

[naila_007 in reply to Jontee180]

Hi Jointee,

Is that Christe's Manchester?

I have diffuse scheloderma, mainly lots of skin involvement. Am on day 6 of immune suppressent mycophelenate. So far it's ok!

Regards,

Naila

[Jontee180 in reply to naila_007]

Yes manchester had my second treatment today got two more

[naila_007 in reply to Jontee180]

I just live nearby to Christie's - if u fancy meeting up let me know 🙂

[dianekjs in reply to Jontee180]

Rituximab is a really good drug, I almost wish I was about to start it instead of the brand new Ocrevus. I hope you respond well to it, many people seem to.

[dianekjs]

Cowhide, I think there's a lot of individual variation in the skin distribution and symmetry. It seems to be fairly common to have one area or side more affected than the other.

[MilkMaid]

Hi Cowhide

My skin tightness is worse on the left side but the right isn't far behind! The skin itchiness varies a lot - weather affects this I'm sure. Been using Aveeno dailly moisturising applied 2-3 times a day or Dermol500 lotion these seem to calm the itchiness down to tolerable.

[hunkyd0ry]

I do feel that my right side is more concerned by symptoms than my left... I seem to have more issues with my fingers on my right hand and also my telangiectasia seems to be populating my face a bit more densely on my right.