Some advice for a Newby please?

Hello everyone & happy Christmas. I have recently come to this site from Lupus UK. I thought I'd check it out as I've had Raynaud's all my life, Lupus & Sjogren's were diagnosed about 4 years ago.

I have recently started to get shiny, stretched skin on my face. I thought it was great at first as my lines disapeared, until I realized it could be related to scleroderma! I have some other classic symptoms, but just thought they were random things or caused by lupus.

I have my rheumatology review next week, so will let them know about this. My question is are these kind of symptoms usually fluctuating or progressing, & what sort of tests are used to confirm a sclerodrma diagnosis? If it's anything like lupus its usually a 'wait & see' situation, which can be very frustrating.

Many thanks in advance. X

10 Replies

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  • It's fluctuating but does not quite go. I don't remember whether they did any test for scleroderma or based simply on my symptoms. Welcome to our site. Have a good Christmas and as good a New Year 2013 as possible.

  • Thank you & best wishes. I'm sure I will find lots of helpful info on here. X

  • I have multi issues like yourself. Lupus, Sceleroderma,Raynauds, MCTD.....

    I have found that they all seem to fluctuate to some degree. But in my experience when one flare there is often some effect from the other conditions as well.

    Although I have found that even if you encounter a serious situation, given the right care and attention, you can turn things around.

  • Thank you, your answer is so positive onhl. I was having nightmares last night that my skin was stretching tighter & tighter, yikes! It's interesting that you say you have these multiple conditions, were they all diagnosed around the same time, or was it a progressing pattern from one to the other?

  • I suppose I had had overwhelming unexplained fatigue on and off for many years. Then, I cant remember what came first, I noticed the raynauds but didnt know what it was and I was initially diagnosed with Lupus after a flare. I got the diagnosis of MCTD and scleroderma later as symptoms pointed at more involvement.

  • Are the treatments for each illness different, depending on which one is flaring?

  • I think that would be a yes, although its a case of treating the symptoms and certain symptoms can be shared by many conditions. So more of a maybe yes :-)

  • Hi roobarb,

    When I was first discovered to have autoimmune disorder the docs suspected Systemic Lupus and Scleroderma. Three monthly Rheumatology appointments blood tests were done over the course of eight years. That I had severe Osteoarthritis and Underactive Thyroid, was quickly determined, I suffer joints and back pains and other related symptoms for a few years prior to. Lupus was ruled out and Raynaud's was very obvious. I had a total right hip replacement not so long ago as a result of the arthritis and was only discharged last year from Rheumatology clinic as my symptoms are now stable. I don't really need anything special, just copious amounts of pain relief and skin creams and ointments, night sedation which doesn't help but I just go with the flow.

    In answer to your question, if my memory serves, I was tested for Scleroderma by a dermatologist whom I saw only twice. He was not interested in my situation so I refused to continue the investigation.

    To be honest, I have so many health challenges, I am quite happy to let sleeping dogs lie with this one. If my condition changes for the worse then I will seek help again. And yes, we are all linked as we shelter under the "blanket" called Autoimmune Disorder, which comes in all "shapes and sizes" We're different and similar at the same time. We are quite unique. The symptoms fluctuate from day to day.

    My symptoms are mild compared to your own but I wish you well soon. It's not an easy road we travel but I find good humour and having a good laugh at any old nonsense helps. I laugh a lot about all sorts of silly things, sometimes I just forget the aches and pains and the itching and skin tightening and hair thinning for a while.

    I have all sorts of organic creams and lotions and potions that I create with organic oils and shea butter, which is the base to the concoctions , my friends call me The High Priestess.

    The creams and potions may or may not do much good but they smell delicious and feel and smell nice on the skin and hair.

    You just take the best care that you can of yourself and ask for help when it gets too much. Be thinking of you and wish you better soon.

    Graygirl1

  • Dear RooBarb:

    I don't know if this will help, but, there is a blood test to determine whether one has Scleroderma, lupus, or other autoimmune disorder. It's called an Anti-Nuclear Anti-bodies (ANA) test. This is the test my dermatologist ordered when she diagnosed me with Scleroderma .

    Hang In There.

    vulcan_princess

  • Thanks gray girl & vulcan princess

    I had completely forget about this post. So much has happened in the past year, with a whole host of auto-immune symptoms, 2 DVT's, an MI & a course of cyclophosamide infusions. Unfortunately I don't feel any further along the road to recovery than I did a year ago. I react so badly to most drugs, & although my rheumy is lovely is her way, she dismisses a lot of the symptoms which I feel are most relevant.

    I hope this doesn't sound like a moan, as I consider myself very lucky in many ways. I think I'm at the point now where I need to realise that this is as good as it gets. I need to learn to enjoy life within my limitations, as well as facing the challenges of the illness as they occur.

    The lack of support for autoimmune patients, & understanding of the conditions among those who are meant to be looking after us has been highlighted so much to me over the past year. I hope that in some small way I can contribute to improving things in the future by working with the relevant charities.

    Thanks again & best wishes to you both. X

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