Hi All,
I am new here and I found this forum/group along the way searching for info for scleroderma. I have been diagnosed to have scleroderma for about a year now. Apart from raynaud's on my hands and feet, I am doing pretty good. My skin is a little shiny on my hands but nothing much to worry. I am now busy with checking my heart and my lungs which is not fine when you are waiting for the results and hoping to not hear anything bad. I hope you all doing well.
Xx
Sa
Hi I was diagnosed two days ago with systemic scleroderma and really scared. I've been really fatigued for four months not knowing what was going on. Trying to find help and advice. Hardly eating, stomach is all over the place.
I'm sorry to know you are feeling not good. I hope you are doing a bit better soon. I understand how you feel when you find out you have Scleroderma. I used to read a lot about it and sometimes I have a breakdown because I am scared. Do you have pain with your stomach? Xx take care
Don't be scared....I was diagnosed 2 years ago and-at first- it is scary. But, after getting treatment of chemotherapy for a wee while and then going onto medication ...mycophenolate....the systemic sclerosis is under control. Further lung damage seems to be stopped and the Raynauds is not as bad due to the clopidogrel tabs. So, once you have been diagnosed and know what is wrong with you it IS half the battle. I too lost weight due to loss of appetite...went from a size 16 down to almost a 12 in a matter of a couple of months of only having sips of water....food tasted horrible I just didn't feel hungry. Have got my appetite back now and put weight back on... I too was exhausted...still do on exertion but you learn to pace yourself so I will do a wee bit of somthing..like housework...making a bed can take half an hour with a rest after this for example. My garden is in a bit of a weed state but, again, a wee bit of weed killing was happening yesterday so fingers crossed that clears it a wee bit. Thing is.....take it easy, stop reading stuff on google...ask your rheumatologist if you have been given one...or your doctor for advice and stop being scared.
Best wishes going forward pet....it will get easier.
I didn't know scleroderma can be treated with chemotherapy, that's a bit scary. I read far too much and it can worry me, I try and keep to nhs websites and the scuk one but can't resist reading EVERYTHING!!!
It was because of the lung damage that was ongoing through the systemic scleroderma...not sure if everyone gets this treatment...but because I was so ill at the time I welcomed anything to help me feel better...I lost so much weight through not eating anything much at all...went from a size 16 down to a 12...my bones were sticking out...I was vomiting a lot and I couldn't stop coughing....the Raynauds which I never had before I became ill was really bad too...so bad I ended up in hospital on a drip to restore the blood supply to my fingers before gangrene set in.....I am okay now...not got black fingertips now because I am blood thinners to help circulation. ...Not everyone with scleroderma gets my symptoms...some have it on the outside and their skin is affected..tightening etc....my systemic ssc is on the inside. I was fine with the chemo ...nothing to be worried or scared about...never lost my hair and was only nauseous for a wee while...best thing was regaining my appetite and not looking like a skeleton anymore....but cost a fortune in buying new clothes! Guess there was some small benefit in weight loss there!
So...what I am trying to tell you is....stop stressing and worrying about what MIGHT happen and concentrate on what IS happening and how it can be treated and how you can deal with it. Take each day and be happy within it. Feel better going forward pet.
Aw, you've had a really bad time of it, I'm glad you're feeling a lot better. Yes, you're right, take each day as it comes, it's the only way really. I suppose us humans always suspect the worst first. Haven't been diagnosed with sclero just raynauds but more and more things are happening at the moment, stiff, extremely sore fingers/feet, swollen knuckles. Rheumatologist said I haven't got lupus but it was early days yet with the scleroderma, so have to wait and see. Meanwhile, I'll take your advice and not stress too much and you take care
Was the same with the swelling of joints ..feet and hands ....still have this problem with my knuckles and ankles and back of knees too for some weird reason....lots of probs with my spine too...but as I also have osteo arthritis after a bad fall at my job years ago it may be related to that...but, thank you for empathy and I do wish you all the best pet...just keep in touch on here and I look forward to hearing how you get on in the future! x
Thanks, I'll let you know how I get on, I wish you the best in the meantime.
I have been there before so I know how it is. I also had only raynaud's at first but things started to get worse. My hands got very swollen and itching. I also had some unknown wound on the tips of my finger and they got infected easily. I had been taking nefidipine for a while but I hated it, got bad headache all the time. I started reading on the internet and I already suspected myself to have some sort of auto immune, so I asked to have my blood checked and no surprise it was positive. So I understand you start reading everything about it and start to get scared. I stop reading about it and start focusing more to myself. Everyday I feel good and I can do sport almost everyday, I can run easily 10 k , I have no pain , I can eat , have good sleep so that should be good right 
Take care
You're doing so well Sa, you seem pretty upbeat about things, that's good! I'll try not to read too much into things and even if it does progress to scleroderma, then I'll take each day as it comes, thanks for your positivity!!!
Hi there, I to was put on chemotherapy for 7 months initially as nothing else would dampen down my immune system as I lost nearly all my mobility, as you say at that stage you welcome anything that may help. Well now 5 years on and am now in the middle of a flare up but it has been well controlled for 5 years with meds. I'm not so scared this time as hopefully meds will work again. Also stressing does make things worse . I know it's hard but taking each day as it comes has worked for me and listen to your body, it will let you know what you can or can't do that day.
Welcome. In time we learn to take things as they come and still carry on. I am 88. Good luck.
Thank you for your comment, it is inspiring to also hear about your story. Since when are you diagnosed? And how are you doing now ?
I was diagnosed 45 years ago when we were very rare indeed. Yes, things happen to me usually in a come and go and come back again cyclical fashion. I accommodate and complain. I see my rheumatologist approximately every 6 months. She listens, advises and refers me when necessary.
I also noticed my upper lips is a lot thinner than before.
Yes I have that. Sad that we lose a lot of things with this illness. We just have to mourn each loss I feel and be grateful for what we do have. I overpaying mine when using lipstick. Have had to do that now for years.
Hi sa0001 and welcome. I joined this forum a few months ago and find it very helpful. Everyone finds things scarey at times but you do learn to live with it. A good positive mental attitude is important but not always easy but we're all here to support each other. Keep smiling and take care
How long do you have to be on chemotherapy for with scleroderma?. I really am so afraid my doctor doesn't talk to me about it and just says you have to wait to see someone she wouldn't refer me to the London royal free where I know there are specialists there. I feel weaker everyday.
Hello there, not everyone needs to go on chemotherapy. Each person needs a good assessment from a Consultant Rheumatologist, who will look at all the symptoms that you are experiencing, do relevant blood tests and others, for example, heart and lung checks and make a decision about your diagnosis and ongoing treatment. It is ideal if you do see a specialist, but most Rheumatologists treat someone with Scleroderma, and if you are not happy then you may be able to persuade your GP to send you elsewhere.
your GP probably doesn't understand much about Scleroderma themselves, so that is why they want you to talk to a Consultant.
Please use the SRUK helpline if there is something specific that you are having difficulty with or post something on here
All my best
Lucyxxx
You might not get chemo treatment...depends what type of sclero you have....others on here have not had it as far as I know...just some of us have. You will need to see your rheumatologist to see what they will prescribe for your particular scleroderma symptoms. Where do you live Sara? I am in Scotland. I have brilliant docs. and really good rheumy. doc. If you are not happy with your doctors then change them....if possible...or make your feelings known to your doctor how unhappy or fearful you are on your illness....even if you ask the doctors receptionist for a double appointment as I know a lot of doctors are only allowed to take a certain amount of time with each patient then booking a double appt. will give you that extra time to state your fears and ask your doc for advice going forward...if they can't be any more helpful then I would definitely seek another doctors practice to get listed with them if at all possible.
hope all your results are good sa, waiting's the worst part, take care
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