Newbie to the page

[Ligiba]

Hi Everyone, I was diagnosed with Reynauds in 2020, at the same time they did blood tests and it showed positive for Scleroderma.

I’ve been under a rhumatology consultant ever since and have an annual check up. To date I seem to have no symptoms, yet my bloods continue to show positive. With the current spotlight that seems to be on this condition at the moment it’s starting to concern me that I could be missing something with my check ups, or is it possible to have it so mildly that I show positive but show nothing. Anyone in a similar boat??

[Clangerscat]

Hi Ligiba and welcome this is definitely the place to come if you have questions. I’m afraid I don’t have experience of this, my symptoms came before my diagnosis. However I can tell you this is such a strange and complicated disease that everyone has a slightly different experience and it can affect you in so many different ways. I wonder if your Raynauds is secondary? If so then this is definitely a symptom of the scleroderma. Hope you get some more replies but in the meantime enjoy the fact you are symptomless and take care of yourself.

[Buttsy]

Hi Ligiba and welcome ,

I have yet to get a positive diagnosis, my blood were ANA centromere positive about 4 years ago and I have Raynauds, but because my nail fold capillary came back negative, I haven’t been given a positive diagnosis.

have you had a nailfold capillary test ? This is a diagnosis tool as well as blood works.

My Rheumatologist has diagnosed fibromyalgia and puts (probable Systemic sclerosis centromere positive tilter>8) on my letters.

I also have under active thyroid, TMJ dysfunction,laryngeal reflux and dysmotality, trouble swallowing,degenerative disc disease and plaque build up in Cartoid and Coronary arteries.B12 deficiency.

So I am on the other side to you ,I have lots of symptoms, and positive blood works but no positive diagnosis as yet, although my Rheumatologist believes I do indeed have it, he seems to want a positive nailfold test before committing to a diagnosis.

From what I have read , symptoms can sometimes come on gradually ,As Clangerscat as said enjoy being symptom free.

[cheeselover342]

HI Ligiba and welcome to the group. As already said by others, symptoms can vary hugely. I have diffuse SSc with various symptoms, including severe GI involvement but only mild Raynauds. I tested positive in 2019 following a skin biopsy because blood tests results were inconclusive.

Interestingly a near neighbour of mine has Scleroderma too but like you, her main symptom is Raynauds, which she has had for many years. She tested positive originally so has regular lung function tests and echocardiograms to 'keep an eye on things'. However she remains free of other symptoms, so I sincerely hope that remains the case for you.

[itexpat]

Hi, Ligiba, it sounds that you are in a similar situation to me: Raynaud in 2020 but negative antibodies then up to 2022. This winter: worse Raynaud and positive SCl-70. I had a capillaroscopy which confirms initial scleroderma. I am waiting for other tests to be done, I hope, soon. It might just be progressive? or do people think it can, in some case, be limited to Raynaud in the hand and cold, cold feet? Take care, all

[ClaireSey]

Hi there...welcome. Diagnosed 2017. Apart from reynauds hardly any progression. Slight reflux...that's it. Annual Lung Function/ Echo remain normal. Very diverse disease.

[OldTed60]

Hi there. It’s unusual to be diagnosed with systemic sclerosis with only Raynauds and an antibody. But as others have said it’s a very variable disease. Some will have it severely with a poor prognosis while others will have mostly Raynauds and some reflux. And there will be many, like me, somewhere in the middle.

I believe the antibody you carry (there are 13 in total ) will often predict the course the disease may take but even this isn’t always the case. Some have very diffuse and rapid progression but then go on to reach a very stable place where others feel fine for many years or decades and then it suddenly progresses to organ involvement.

As someone here has mentioned there’s a nailfold capillary test which is non invasive but quite a reliable diagnostic and predictive tool. Mine were normal for about 5 years despite Raynaud’s with severe GI problems and a diffuse antibody. The local team wouldn’t diagnose me without nailfold capillary changes. Finally I sought a second opinion from Prof at Royal Free and he immediately found nailfold capillary changes showing early scleroderma. With my severe GI and other skin signs etc and diagnosed me unequivocally there and then. I don’t have any lung or heart involvement so far but my entire gut is paralysed, requiring a stoma, which apparently is in keeping with my antibody. If you don’t have worsening symptoms then the main thing is that you’re getting regular checked-ups and monitoring