Scleroderma & Raynaud's UK (SRUK)
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Recent systemic sclerosis diagnosis

Hello everyone 😃 I've suffered Raynauds for around 9 years now which has progressively gotten worse particularly bad the last 3 years. I've had 3 lots of bloods taken over the years all showing positive ANA and ENA, but doctors didn't feel a slight positive was enough to investigate further. My worsening Raynauds has been excruciatingly painful, so doctors sent for more bloods, this time I had my Positive ANA and ENA but also a positive anti centromere antibody which is found in systemic sclerosis, so it's early diagnosis and I'm now awaiting an echocardiogram and lung function test. I have to admit I'm very scared, but I did always suspect my Raynauds wasn't primary. Any advice and information would be greatly received.

Thanks in advance

😃

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Hello Missymoo, what is it that you would particularly like advice and information about? What are you scared of? Anti-centromere is associated with Limited Systemic Sclerosis. This has a certain pattern of symptoms, but I have met and talked to many people with Scleroderma over the years and everyone is different. You just have to look at what is happening to you, not speculate about what might happen and deal with each symptom in the most effective and helpful way you can. Just because you have a formal diagnosis it does not mean that this is a slippery slope. You may find that you just stay predominantly with the Raynauds. It is possible to have symptoms that remain stable, come and go, or burn out. It is a rollercoaster with highs and lows.

SRUK is a good source of information, but as I said above, don't be scaring yourself assuming that all symptoms are coming your way.

All my best

Lucy x

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I agree with Lucy missy moo don't b scared iv got same diagnosis and first thgt petrified me I just have to take each day as it comes and stressing about it all makes it worse keep reading and talkn on this forum ul see as time goes on it's not the end of ur life it's just changing certain things and adjusting hopefully ur gd days will out number ur bad days most of the time iv no pains flares but always blue cold hands stuck in gloves even today sunny warm and s pair of knitted gloves on doin my shopping in Tesco lol u just have to find new ways and educate urself on it all and ul be fine so don't let fear take over x

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Welcome to the fold!

For starters: it's good to have lung and heart function base lines; if this hasn't happened already, get referred to a specialist scleroderma centre, as the waiting time can be months.

Meanwhile keep your hands moisturised and warm, view wearing gloves as super-chic, and make lists of symptoms and questions.

Medication for Raynaud's, eg nifedipine, may help, and you may also need medication for any gut symptoms.

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You are being looked after. Good, so am I, and I am 88. Take a step at a time. Although there no such as a cure for us, there is a lot that can be done to help.

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hi missymoo, i developed rays out of the blue about 5 years ago took me 2 year's to do something by which time i was clear it had to be secondary. saw gp asked for ana / enas And came back with clear centromere pattern . reffered to rheumy and for baseline cxr/echo/pft's and onto nifedipine which for me transformed life virtually no atacks since.

i have progressed further into lSsc and a few other autoimmune bits but once you get your head around what it all means and make a few changes in lifestyle etc things can be basically normal most of the time. leave the future there - it hasnt happened yet and focus on having the best today you can have.

i dont know how familiar you are with biology/ medicine etc (im a nurse so can interprt info) but there are clear guidelines here that you can discuss with you team.

ard.bmj.com/content/early/2...

and use peeps around you, family friends etc, if in uk join SRUK call the helpline 0800 311 2756 and use these boards lots of very smart & experience d peeps here.

also remember that many people who develop secondary rays even with auto antibodies do not progress clinically and develop Ssc of any type so try not to catastrophise, and focus on doing the best you can at whatever it is you do!

Best wishes al

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Thank you all so much for your replies, it's nice to chat to people who know. I suppose I just want the baseline heart and lung checks really and quickly.

like I've said, I've lived with severe Raynauds for 9/10 years now, I'm the only person wearing gloves in the summer walking around the super market 😂 Get some strange looks. I took nipifidene, but it made me feel very unwell, I'm now taking losartan which seem ok so far.

I do suffer with acid reflux, didn't think much of it until this diagnosis. My skin seems fine, except I have a few broken blood vessels on my face? Not sure if connected? Also, after Raynaud attacks I have sharp pains in fingers and arms, so much so my grip goes?! 🤔

Anyway, thank you all for your replies, I really appreciate it. X

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Hello Missymoo, most of us know how scarey it is when first diagnoses. Broken blood vessels are probably telangiectasia, which are the 't' in the classic (CREST) limited systemic sclerosis symptoms along with the Raynauds and the acid reflux that you have. I did get stabbing joint pains for a while which have now disappeared, I did wonder if this was related to Vitamins D deficiency which I also had. Levels are normal now after supplements, but it is very common in systemic sclerosis (also makes you very tired and depressed,) so it might be worth getting your levels checked. Your medics are on the ball with the echo and lung tests, these will be part of your annual monitoring, I am just very grateful that any complications will be picked up much more so than for other members of the public due to all the attention I am getting!

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