diffuse scleroderma

i saw a scleroderma specialist yesterday, thought i was going for the nail foil capilliary test but there was a mix up. He told me i have the severe form of scleroderma and wants me to start on methotrexate says it will help my skin. i was upset to hear the news as i thought until that point i had the limited form (aka crest) . There are lots of questions re prognosis life expectancy etc going round in my head right now. my arms legs mouth are affected currently and my upper chest is just beginning to feel taut (3 days now) i have some acid reflux but that is it . would like to hear how other people have got on since diagnosis

21 Replies

  • Hi there, don't panic have had diffuse systemic sclerosis for 24 years call me on 02070001925 (scleroderma society office) leave yr number and I'll get back 2 u

  • have you really had diffuse scleroderma that long? I've just been diagnosed. Scarey!

  • Hi how you doing with the disease? I've had it about 2 years !

  • Hi

    I was wondering if you had any lung involvement?

  • is that uk? x

  • left message

  • Lollipop - so sorry to read this - you have obviously had a huge shock, and I can understand why you feel like your head is spinning !

    I hope Mike has managed to get hold of you, and reassure you that it is not as bad as you were thinking. I know one of the worst things I found with my diagnosis was how quickly my brain/imagination jumped from my current situation, to imagining one where I was stuck in bed, unable to enjoy my life, and feeling very vulnerable......and I have very mild symptoms in comparison to many out there.

    As Mike has said, many people with Diffuse go on to leave pretty normal life styles. You are lucky - you are in the hands of a Sclero specialist, who will ensure you receive the very best treatment. I hope you are able to get your head around this as quickly as possible. Remember a positive attitude does a lot for you and those around you - don't let the Sclero win.


  • Hi Lollipop,

    I am sorry you are having a tough time, these thoughts often go through my head too. I am not sure of your age, but I was talking to my physiotherapist last week and she told me that scleroderma can go into remission after the menopause as it often feeds on eostrogen. She said that the symptoms can in some cases disappear completely (It may be worth asking your specialist). Please try to be positive and as the others have said, you are in great hands, medical knowledge has improved and is improving all the time with research and awareness of this condition. Is your specialist and/or GP aware of your fears? They may be able to put your mind at rest. Take good care of yourself and keep us all posted. My thoughts and prayers are with you. I am sure you will be fine.

    Big hugs x

  • Hi Lollipop

    I am in a similar position, I was diagnosed with diffuse scleroderma last year after a short time with the diagnosis of limited scleroderma. They started me on mycophenolate that day and I have been on that since. The good news is that my symptoms are now loads better and seem (touch wood) to of stablised. I'm now feeling much more positive about the whole thing. Enjoying today is now top of my priority list, not worrying about tomorrow. I felt so alone at the start, but these forums are ace! We're not on our own :-)

    Take care, sending hugs. Mail if you want to chat x

  • Thank you all so much , its always the negative stories that stay in your mind and the what if i am one of those that doesnt respond to treatment or rapidly declines so much that they cannot do anything for me.At night time my mind plays havoc. However i am trying to remain positive and find the support on here a real comfort .I am hoping the methotrexate will help but of course i dont expect that to happen overnight. I only met the specialist for the first time on the day he told me the results and i saw my gp the day after(yesterday) and sat in tears at him he said what i was going through was natural and being a nurse i know all this , however its not stopping me from going through the process and despite support feeling quite isolated at times.Its only been 48 hours so i guess i will come to terms with it

  • annie , i am 48... till the end of the month when i have a birhtday x

  • Hi Lollipop

    Sorry, I have only just caught up with your messages. Scleroderma is a difficult disease to cope with, & I'm sorry to hear you are having this tough time. I was diagnosed with diffuse scleroderma at the age of 40. I'm now 66, much improved, & very busy enjoying life! The first few years were not easy but no two patients follow just the same path. Many patients plateau or improve, & seeing a good specialist is important.

    Don't forget the Helpline 0800 311 2756 if you need more info or just a chat.

    Good luck & keep us updated!

  • i think it was the shock of the diagnosis on tues that scared me but today i am feeling much more positive and less fearsome for the future. I am hoping the methotrexate that i start monday will help .It is so good to hear from people that have lived with it for twenty plus years thank you all for the positives x

  • Has anyone had diffuse scleroderma but never had any organ involvement

  • I was diagnosed with diffuse & now I have a bit of gut involvement but no kidney, lung or heart probs.

  • thanks lizat that sounds hopeful if its taken 26 years makes me feel more hopeful

  • saw consultant on sept 7th stopped methotrexate and reffered me to royal free. Appointment on nov first.

    Been back to see to see consultant today, he started me on fluoxitine to dilate arteries more and mycopenthalate, plus had steroid injection as he thinks there is some inflammation there, also getting me to have iloprost infusion as soon as can be arranged

  • After one year I am very interesting to know of how are you . Are you going to royal free ? In what medication are you ? How often do you have iloprost infusions?

  • Sorry I have only just seen this, my disease got worse before it began to improve. Ido have iloprost but not sure if it really does any good for me. I am having problems with varicose veins which I never had before. Luckily no organ involvement so far .

  • I was diagnosed at 40 in 1995, 5 yrs immunosuppression, cyclophosphomide, later Azathioprine, hair loss, overweight, double vision, ischemia in legs, facial deformation, lung fibrosis, could not hold my head upright due to muscle weakness... etc... etc...

    Today I am stable, take only Nexium for gastric reflux, DLCO stable since 2001 at 63%, no pains anywhere, weak muscles in neck and thighs but I swim 1 hr daily, I have a near-normal lifestyle. My fingers are straight again but a bit stiff. Living in Spain, since 2004, definitely helped my Raynaud's.

    There is light on the horizon, do not despair, we may have a shorter lifespan with lung fibrosis, but at 58 I have a very good life quality as long as I do not look into the mirror!

    Best of luck!

  • I had chemotherapy through a hickman line as my veins were so rubbish , it didnt seem to do much good so I was put back on mycophenolate( i was only on it a few weeks before they stopped and tried the chemo ) I lost over a stone in weight too. Anyway I have put it all back on and more sadly lol, my skin has Improved dramatically, I stillfeel very tired at times and struggle with aneamia. I do get down as family and friends dont seem to understand, especially as I can look so well. My face is swollen and my nose pinched and I mourn for my old life and would love to go back to work. However I was so poorly that no one expected me to be here now and here I am I get out and about again and went on holiday i can hold a pen and write a little now and can potter in the garden but have to take frequent rests ax it causes pain. I am happy and thankful and optimistic for the future

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