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Scleroderma & Raynaud's UK (SRUK)
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General prognosis years after diagnosis.

Hello to anyone reading 👋

Bit of background, Raynauds sufferer for 11 years which got progressively worse the last 3-4 years. Doctors always thought it might have been primary even though bloods always came back slightly positive for ANA’s, but after testing positive for the anti centromere antibody in Feb 2017 they now think I have Limited cutaneous systemic sclerosis, other symptoms include broken blood vessels on face and heartburn.

I wonder, can anyone explain what they mean by swallowing problems associated with ssc? Does the problem occur with the actual throat? When I eat (not always) it feels like the food is gathered and gets stuck in my, what I assume to be my oesophagus part way down my chest. It does pass, but feels uncomfortable as it does?!? Could this be associated?

Another question id like to ask my fellow sufferers is and I know it will be different for everyone, but how are people’s symptoms say 5-10 years after diagnosis? I had such a panic the other night just thinking where will I be in 10 years in terms of symptoms and thinking of my young son. I know I shouldn’t think that way, and I don’t usually, just got the better of me on that occasion. The fab news is my echocardiogram and lung function tests came back fine, long may that continue. My last rheumy appointment was all very rushed (she was running an hour late) and felt my questions weren’t answered, it was pretty much, yes, you do have ssc, here’s some drugs and a leaflet and I’ll see you in 6 months 😮

I’ve rambled on so much, I do apologise, but really do appreciate any response.

Many thanks

Missy x

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Hi Missy Moo, I also have Limited Scleroderma diagnosed 2014 (at last) and Raynauds. Swallowing problems for me are basically that I have to wash everything down with lashings of sauce or have water with my meals. It is just so dry swallowing and yes you can often feel it go down through the oesophagus. Also have GAVE (Watermelon stomach recently diagnosed after Gastroscopy). Prof Denton told me that because I had red spots on my forehead I would possibly also have them in my stomach which of course is GAVE. Also have GI issues. Latest is blood in my stools (after the bowel screening) which at the moment I am assuming is from the GAVE, but havent had that confirmed as yet. Oh what fun.

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Hi Missy, there are a number of reasons why swallowing problems can occur. This is quite a good page on the SRUK website and it links to a presentation on the gut too.

sruk.co.uk/scleroderma/scle...

Basically you can get a variety of issues that combine to cause problems including dry mouth, thinning or thickening of the walls of the oesophagus, small and large bowel; reduced contraction of the walls of the gut meaning food isn't propelled down so easily...to mention a few! There are some great tips on the SRUK website.

To go back to your other issue about where will you be in 10years time...in truth the answer is nobody knows. The likelihood is still here, with a son who will be older and giving you grief as a teenager or university adult ;)) You are early stages, you don't have heart and lung involvement and that is the main issue when it comes to prognosis. Many people have this condition grumbling on in the background throughout their lives, and others have a rollercoaster of flare ups and periods of calm...others have severe flares and it can lead to a shortened life. Who knows where we all sit on that spectrum. You would be weird if you didn't sit and worry about the worst case scenario because everyone does...usually when you are lying awake in the small hours of the morning!!! All you can ever do is make sensible choices about how you look after yourself. That is what is important in terms of managing this condition, taking care of you. Doing as many things as possible to help yourself and your body. making the best choices about diet and exercise, finding ways to relax and calm yourself down, budgeting your energy wisely, not running yourself ragged on a regular basis, getting enough sleep, and making time for the important people and enjoyable activities in your life...right here, right now. Then it won't matter where you will be in ten years time because you will have lived your life well and enjoyed every last moment of it! And because you will have looked after yourself, you should still be here.

We are all different. You live your life, your way, in a good way :)

Hugs

Lucy xxx

p.s. in 2012 it was suggested that because of heart and lung involvement I might not be here in 3-5years...and I am still here, and in fact I went back to work last year doing more hours than I could before...never say never, because you never know!!!

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Hi Lucy

I adore your post, thanks so much for taking your time to read and respond so beautifully.

Your story is so inspiring and makes me appreciate that actually, I am ok right now, living my life to the full and I absolutely should not think too deeply into something that’s not actually happened yet.

Thank you for sharing Lucy I’m thrilled to hear you’re doing so well and long LONG may that continue 👊👊

Take care xx

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Hey, you are more than welcome. We are all here to support each other through mutual support and understanding...and long may that continue! :)

Lx

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Hi the swallowing of food and the feeling of getting stuck happens a lot but I find it only happens with bread so I've cut it out of my duet as much as possible

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That was a lovely reply Lucy Jean, to the point but really positive, long may you keep well.

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Hi missy. Like you I have very recently been diagnosed with systemic sclerosis and secondary raynauds. My symptoms are similar to yours currently with scars on my arms arms, reflux issues and some swallowing problems. My ecg has come back as fine and lung tests in a couple of weeks. I worry too about the future for my husband more than for me ! I will continue as before with slimming world eating sensibly and continue with my training for the London marathon in April. I figure right now for the mist part in fine and so will be fine 😀😀

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Thanks sylviaherring. It’s all a learning curve I suppose and we should be thankful our symptoms so far are limited. Good for you with the training 👏 I will also continue with my regular excercise, great for body and mind 😉

Good luck with everything xx

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Same to you hunni

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Hi Missy, just a little positive post to help you along. I have Limited Scleroderma diagnosed over 7 years ago. I get lots of joint pain, rib cage pain, heartburn, dry eyes, thigh muscles hurt etc and there are times, usually when I've been to the bathroom in the middle of the night, when I lie and worry where i'll be in a few years time. But the morning comes and I'm up early doing cleaning, taking grandchildren to school, doing things for my daughter while she's at work and doing my old dad's cleaning. I try and live in each day as and when it comes and tell myself "hey you're doing so well". Take care. :)

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😘 beautifully put nanagill. X

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Thanks for this post. All my problems started with acid reflux and I'm now at a stage where food often can't get into my stomach, and has to be sort of regurgitated (sorry to be graphic) using a lot of fluid which brings the blockage back. It isn't vomiting, just food defying gravity and the taste of meds coming back is really unpleasant. It can take hours to clear. I'm extremely limited in what I can eat and can only eat small amounts slowly. As a result I've lost a great deal of weight with a current BMI of 16. Over the last few months my bowels have started to become erratic.

I've had a diagnosis of Secondary Raynaud's for some time and have just found out by accident that I was diagnosed with systemic sclerosis at my last rheumy visit. No skin involvement, and I've had a thorough work up of lungs, heart etc which shows no major organ involvement.

I've been mainly on the lupus forum up to now as I have a number of symptoms compatible with that.

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Hi there. I have very similar symptoms to those you describe plus mild Raynaud’s secondary to severe neuropathy.

To date my main diagnosis is primary Sjögren’s. I too have to swallow food using lashings of sauce and water and am now on maximum treatment for severe reflux - same with constipation. I find that I do much better if I can soften or break food down slowly in my mouth before swallowing. The main foods I have to avoid these days are the ones that don’t break down easily prior to swallowing or that can’t be nibbled at. Also having a cup with a built in straw right next to me when I’m eating helps a lot as otherwise my oesophagus seems to lock and this causes me to panic. Taking tiny sips of water or warm tea helps rather than glugging as it’s sometimes tempting to do.

My ANA has the pattern of Ssc rather than Sjögren’s and I’m monitored by the CTD/ Scleroderma clinic, neurology and gastroenterology - soon to add dermatology to the list. I often get symptoms that will have me in a state of panic - only to find that there’s a much more mundane cause.

My first rheumatologist, who misdiagnosed me with RA, used to tell me that it’s impossible for any rheumatologist to predict the course of rheumatic diseases. Some are well managed or stabilise and never really progress where others affect people very severely. Some go on to develop other autoimmunity where others start off with one aggressive rheumatic disease that is brought under very good control through medications and lifestyle and never acquire overlapping diseases .

I knew a man who had lived with Scleroderma for much of his adult life but only died a few years ago in his mid 80s. I used to meet him out striding with his dog, clad in windproof dark glasses, thick coat and gloves whatever the weather - right up until the year he died of a heart attack.

Try not to let the fears about what may never materialise, overwhelm you. I say this with “rank hypocrite” written in neon above my head - but at least my rational self knows it to be true!

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Hello Missy Moo, like you I have limited systemic sclerosis, with Raynauds, reflux and swallowing difficulties; puffy fingers and I have had finger ulcers, but as yet my skin is not so tight as to restrict movement. I also have telangiectasia - the red facial blemishes, some spots on hands too. I was diagnosed in Feb 2015. However, I have had Raynauds for over 30 years, reflux for about 25 years and the facial markings, for at least 10 years. So in hindsight, I have probably had scleroderma at least 20 years. I am 51. I have had a couple of 'scares' on heart issues but there is nothing definite and I still lead a fully active life working full time. So my message is that yes we are all different but in my case I have been at this stage for a long time - so I hope you are too!

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