Newly diagnosed

Hi, I'm new to all this. I was told 2 months ago I had limited scleroderma which was quite a shock as I'd asked to be tested for Sjrogrens having got dry eyes, dry mouth and swallowing difficulties. I have virtually no other symptoms. I was diagnosed with Raynauds over 30 years ago, I don't take any medication for it and never have., I just manage it as best I can. I was made aware I had a problem with my auto immune system 18 years ago after I had half my thyroid removed, I assumed it was something to do with that. I now take Lansaprazole for reflux which has relieved my swallowing problems. I have had a CT scan and lung function test and I'm still waiting for an echo. I had a follow up appointment with my Rheumy and he said every thing seems to be okay and I would just be monitored with tests for the time being. I'm sitting here reading all your posts and I can relate to a lot of the things/symptoms everyone refers to but I've just put them down to my age, I'm 60. Can anyone tell me what symptoms I need to be aware of? I have absolutely no idea what comes next or what I should be looking out for.

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  • Hello Dawzelle, welcome to the forum, it can be scarey when you are newly diagnosed. I was similar at diagnosis with limited - long standing untreated Raynauds including a long term finger ulcer and I was already on lansoprazole for reflux and I also have swallowing problems. You may find that you develop no further symptoms. Reducing your reflux will help protect your lungs. The important thing is that your rheumy has done all the required initial screenings and if your echo is clear then annual tests may be sufficient for you. If your Raynauds gets worse or if you develop any sort of ulcers, you must see your GP or rheumy and you may be prescribed vasodilators. Similarly if you notice any skin changes - tightening or stiffness, especially fingers or around the mouth - then you may be prescribed medication such as mycophenolate. I don't suffer from dry eyes and mouth but there are others on here that do. Incidentally I also follow the Lupus forum here as there is often crossover with problems. You are probably aware that this forum exists because of the excellent charity SRUK and their website has some really great information on exercises for fingers and mouth and how to keep warm to reduce Raynauds and lots lots more! Membership is very cheap and they also hold a very informative conference - September near Crewe this year.

    Fatigue and depression is quite common - this might be directly due to the scleroderma or indirectly due to other issues such as vitamin D deficiency, which is common.

    Make sure when you have any other unrelated medical treatments including dentistry and optical that you tell them you have systemic sclerosis,. Also make sure that your GP understands your condition - some are a lot better than others, often just based on their own personal experiences with patients.

  • Careful! Dawzelle is talking about LIMITED scleroderma, not systemic, so her internal organs are unlikely to be effected.

  • Maggie-Stanfield I have LIMITED systemic sclerosis diagnosed just over 2 years ago. She says she already has oesophageal involvement with swallowing problems and reflux, as have I and I am also noticing an increasingly sluggish bowel. Reflux has been shown to be one of the potential triggers for pulmonary fibrosis or other lung complications. Limited systemic sclerosis is one of the main risk groups for Pulmonary Arterial Hypertension and this is one of the reasons that we have an annual echo. I have had 4 echos in 3 years, which have shown my atria are becoming enlarged (yr 1 I was normal though) and I had a visit to Sheffield specialist PH unit last month as I am showing some signs of PAH. If I were not already on sildenafil I would have been referred for a right heart catheter but for now I am still on annual monitoring as at present I only have very mild symptoms and I am fully active. I am vit D and iron deficient despite eating a balanced diet and working out of doors. So I humbly suggest there is nothing in my initial response that is out of place for someone with limited SSc and it is important that monitoring continues.

  • The correct term is LIMITED SYSTEMIC SCLEROSIS (as opposed to DIFFUSE SS. They are both SYSTEMIC

  • Thank you both. This is not a clear cut picture. In the same way as Crest is no longer used as a diagnosis, no two rheumatologists actually agree whether all scleroderma is systemic, limited or diffuse, or whether these are two entirely separate conditions or whether limited could lead to a systemic form. I have been advised in both directions - it's limited, not systemic; it's diffuse but not systemic; it's limited and systemic and it's diffuse and systemic....so my intention was not to criticise or comment on anyone's unique experience of the disease but rather to suggest that even where there is GI involvement, the condition is not necessarily systemic. With PAH, kidney involvement and much more serious bowel involvement, then it almost certainly is systemic. Does it matter? Yes, inasmuch as if your condition is declared not to be systemic, then your internal organs are not so high risk.

  • Hi, I'm sorry if I have confused things a bit. When I first saw my rheumatologist he said I had limited scleroderma or systemic sclerosis which it is also known by. To be honest I was that confused with all the information being thrown at me I may have misheard him but it does include organ involvement. The lung function test, echo and CT were requested as a starting point. I also struggle for breath when going upstairs or walk uphill. An endoscopy was requested because of my swallowing issues but I'm hopeful this can be put off now the Lansaprazole has had such a good effect.

    For me, getting as much information as I can is extremely helpful. I tend not to get wound up too much about it because I just see it as the hand I've been dealt and I'll just have to deal with what comes when it comes. My biggest concern is when I'll have to start taking medication: I don't like taking any pills not even paracetamol. That's why I've never taken anything for the Raynauds, even the Lansaprazole was a big thing for me to agree to.

    Keep smiling 😊

  • So, Maggie, this was interesting because I am getting concerned with my GI ISSUES. HOW DOES ONE GET CHECK FOR their scleroderma TO BE SYSTEMIC OR NOT. I AM C.R.E.S.T. and Sojherns. Do not have PAH so far. Kevyne

  • Hi Kevyneg,

    The diagnosis of Crest has kind of dropped out of favour somewhat so is more likely to be described like this:

    "CREST syndrome, also known as the limited cutaneous form of systemic sclerosis (lcSSc) is a multisystem connective tissue disorder. The acronym "CREST" refers to the five main features: calcinosis, Raynaud's phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia."

    So within that definition, then yes, it is systemic.

    If you manage to find out for definite, do let me know! When I was first diagnosed, I was told it was not systemic though it was certainly diffuse, covering most of my legs, arms and torso. That (Dermatology) consultant said it wouldn't become systemic; that if it started out as non-systemic then it would stay that way.

    Then I came to a different, and much better, consultant in Glasgow who said no, all scleroderma - or SSc - is systemic. It's only a question of degree. Looking back, that first consultant couldn't possibly have known whether it was systemic or not because he did no heart, lung or kidney tests to check for any damage.

    Only then did I get a referral to a Rheumatologist and have those various checks carried out. There is certainly damage to my oesophagus. My skin is a tight, dense thin layer that barely moves or stretches and is subject to violent flare-ups and frequent under-surface bleeds. Still, the view has varied between different consultants I've seen.

    In the 4 years since, I've been told it might be eosinophilic fasciitis as well as systemic sclerosis with a bit of morphea thrown in - what's now generally called' Non-specific connective tissue disease'. I certainly have GI problems including bowel issues. My lungs are just within the normal range and my kidneys seem to be okay.

    But I don't think there is any really definitive answer or only in the sense that if none of your organs are affected, then it looks like it isn't systemic. If you are beginning to show direct organ problems, then it probably is, so the consultant who described the whole thing as a range rather than two distinctly separate conditions is the one I tend to believe!

    It's generally believed that the first 3 years are the most risky and that after that it tends to die down a bit, though the underlying cause never goes away.

    Sorry for the long ramble!

  • Hello Dawzelle

    I'm in in your boat. I was diagnosed about 2 years ago following lots of tests including lung function and lots of swallow this, drink that so we can see your insides type of tests. I have scleroderma, sjogren's syndrome, Raynaud's just like you with a bit of rheumatoid arthritis chucked into the mix. After the initial tests I was given medication, i.e. an autoimmune suppressant called hydroxychloroquine sulfate. I also take lansoprazole, a statin, blood pressure tablet, and a vitamin D capsules plus Clopidogrel which is a blood thinner for another condition. I'm 76.

    Now I just tick along and get an occasional check at the rheumatology dept. I asked my GP if this condition will ever go away and he said "not usually". My skin is definitely changing - getting darker in a patchy sort of way. It's worse on my hands and feet which are quite uncomfortable sometimes and it feels like my skin is going to split. My face looks tanned all the time with people saying "you look well". Bit of a misnomer if ever there was one. There are days when I don't feel well and find it's best to be philosophical about it all. Good days, bad days, but make sure to enjoy the good ones.

    As time goes on I find I can't eat much so at least I have the added bonus of having lost loads of weight - it's all to do with the scleroderma affecting the oesophagus - I find I feel better if I eat less. I often wonder what's going to happen further down the line but have decided not to worry about it yet. I also get a rash which comes and goes. It was very apparent before the initial diagnosis - very red spots on my legs and some on my face. The consultant noticed them immediately and said it was CREST syndrome or systemic sclerosis (scleroderma). Spots are still there but faded to pale brown. I assume the hydroxychloroquine is doing its job and keeping things 'suppressed'.

    I find the Raynaud's gets more troublesome as time goes on especially in the winter. I also have trouble in the supermarket by the fridges.

    I'm sure you'll learn to "manage" things as you find out more about it - it's all very overwhelming to begin with but eventually it becomes a way of life. Very best wishes.

  • So Naggie, do u mind my asking what u r GI problems are cause I am beginning to think I need to be checked for some kind of cancer. Thank you, Kevyneg

  • Hey Maggie. If u don't mind my asking, just what are your GI troubles?. I am thinking I need to be checked for some kind of cancer . Thank you so much, Kevyneg

  • Sorry, that was Maggie.... (fat fingers) Kevyneg

  • You seem to be well cared for. I am 88 and in my experience things come and go and come again in cycles. Welcome to our circle.

  • Hi Dawzelle and welcome. Whatever comes next you can bet your bottom dollar someone on here is experiencing the same. That's why I love this forum. Hope you find it as helpful as I have so far.

  • Thank you all for your comments they are really helpful and for your welcome messages 😊 I already have some skin tightening in my fingers and often struggle to get lids off things as my grip isn't brilliant. I know what you mean Betsie about the 'you look well' comment, patches of skin on my forehead are now so dark it actually looks like I haven't washed for weeks! The other thing I'm struggling with is limited movement in my neck, I'm not sure if that's got anything to do with the condition or if it's just my age but I've got some physio booked in to sort that out. Hopefully.

  • Don't give up with the incompetent DR. Thing. I have been to probably 15 or more! Keep looking for people that will be on your team. I have a regular dr and two natural paths. On a better tract now. But as I am progressing ( had this 18 years) I need to find a rheumatologist that will listen and respect the fact I don't want to be on many meds. This is a great support group, nice to talk to others experiencing the same

    Thing.👩🏻‍🌾🌻

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