Diagnosed yesterday!

[Chrisey35]

Hi All,

Well...guess I'm joining the gang. Yesterday i was diagnosed with Systemic Sclerosis/Scleroderma. I have suffered from Raynaud's for years. Can anyone advise on their experiences in relation to continuing working or medical retirement?

[Hidden]

Hi, I guess it depends what’s going on for you. I work full time but my employer lets me work from home when I need to - I don’t have any internal organ involvement other than stomach/paresis. I count myself on the lucky side

[Chrisey35 in reply to Hidden]

Thanks Bear.

[Sootie1]

Hi Chrisey,

I was diagnosed at 41 20 years ago, aggressive onset of lung fibrosis, could not stand straight with head upright, my hands and feet always navy blue and curved, etc etc. Had immunosuppression with cyclophosphamide for 5 months, then 5 years Azathioprine. I am fine now, 63% DLCO unchanged since 2001. I moved to Spain in 2004 so cold is not an issue. I do not climb steep stairs and am short-breathed on exertion but otherwise I lead a normal life without meds. Just Esmoprazol for reflux. So there is life after diagnosis and proper treatment! I spent 6 months in bed in 1996 without much hope and nobody to ask questions so SRUK is a blessing!

Whatever your condition, do not dispair, it really can go away!

Best wishes

💝💐💝

[marilynmcl]

Hello, it can be a bit daunting and stressful to begin with....but, depending on how much you have been affected by S.sc. you could carry on as much as possibly normal,whatever normal is! I have had this for 3 years now ...lungs quite bad but stable with mycophenolate tablets after cyclophosphamide treatment in hospital...joints swollen and painful ...hands,feet,ankles and any other joint you could mention! So, hurts to walk very much...I have to use a mobility scooter if I have to go out and sticks for when I have to walk where no scooter has gone before! I also have osteoarthritic knees which happened before the S.sc. diagnosis...had an accident at work for that one! So, am retired now but if I were of an age to still be at work then I would not have been able to continue..if not so badly affected I would definitely have carried on as I loved my job. The thing is...how do you feel? You are the only one who can say if you are fit enough for your job. I do wish you all the best going forward and take the rheumatologist's...hope you do have one of these as they are the ones who will keep you right...advice. I am sure that they would be able to help with any and all queries for you. x

[Chrisey35]

Thank u x

[cowhide]

I was diagnosed nearly 3 years ago (symptoms for much longer than that but just lived with it) but still work more than full time as a dairy farmer. It will all depend how the condition affects you - we are all different - and also how tolerant your employer is. So I need to be able to get in the warm if I have a bad Raynauds attack, I need to wear gloves most of the time to avoid infecting my finger ulcers, I cannot do some things easily now like calve a cow or risk bashing my fingers restraining a cow. I need time off for medical appointments, everything from a 5 min apt for routine bloods at GP surgery to a whole day in Sheffield for PHA investigations, a whole load of annual monitoring check ups in Leicester etc. I have bad days when I am exhausted especially as my work can be very physical, but addressing my Vit D and iron deficiency has helped a lot with the fatigue. I am on a wealth of medication but luckily no side effects.