I received a very high positive (+++) SCL70 which stated scleroderma/systemic sclerosis. GP has referred me to rheumatology which I will likely be waiting atleast 8 weeks for (urgent referal 🫣).
I don't have any skin problems - but few other bits hens the screening, severe fatigue, aches, pains, raynauds for a few years, hair loss etc
Does this sit right with the diagnosis? What can I expect?
Hi. All autoimmune diseases are inherently unpredictable and 8 weeks + really isn’t long to wait in the current era as a new referral - although I know that any wait feels like an age at this early stage. It took me 12 years to get correctly diagnosed but I was started on treatments regardless and this has helped. Systemic Sclerosis cannot be diagnosed by antibody alone and your symptoms are fairly non specific as mine were for many years despite a rarer highly positive (diffuse) antibody and other confirmed autoimmune diseases. I still don’t have that much skin tightening although it is starting to show more a bit now but I’m also hypermobile so started life as stretchy! The diagnostic clincher for me was my nailfold capillareroscopy - which last year showed clear changes of early scleroderma - having been entirely normal 2 years previously. This rate of progression is very unusual though so the UK scleroderma expert told me last year. Most with normal capillaries won’t go on to develop changes for at least ten years, which I guess goes to show that each of us is unique and no one rule ever fits all. Don’t anticipate anything at this early stage - some have false positives and for some even diffuse scleroderma remits whereas some with limited have it more severely. I don’t fit either group but I am well looked after now.
In keeping with my rare scleroderma antibody I now have severe GI involvement and have just had major surgery for a loop colostomy - likely to become permanent or require changing to more risky illeostomy in future. I can find very few others who have had this stoma surgery with scleroderma so I know I’m very unusual but then so is my U3 RNP antibody. So far I have no lung or heart involvement and ??mild myositis - all also associated with my SSc antibody. So I take comfort in the fact that treatments have me fairly stable and the lower GI is damage done now and no earlier diagnosis or treatment would have prevented. Other than further GI surgery I don’t worry now about the future because it is what it is and, once this latest surgery has settled, I hope that I’ll stay in relative drug induced remission. The main thing is to be diagnosed and treated. Best of luck xx
I’m sure lots of people will tell you that it’s different for everyone - no one pattern of symptoms or progression. I too have almost no skin impact so far, 4 years after diagnosis. But I stretch hands, feet, face etc every day to just to make sure!
morning,
I have a positive anti centromere antibody and I am under Rhumatologist, I like you have Raynauds, fatigue, aches and pains and Gi involvement.I still don’t have a definite diagnosis,like OldTed my nailfold have been normal and this is over 2 years on from positive ANA, I however am not on any medication but my GP as asked for an earlier appointment with Rheumatologist as my hands seem to be becoming increasing more stiff, painful ect. A definite diagnosis can take some time ,I am still waiting and symptoms vary from person to person.
Good luck with your appointment,
It's all feeling abit much at the moment. My referal was marked as urgent when I saw the GP yesterday, but apparently it can be 4 months still as urgent, 7 months for routine, so I'm a long way off getting anywhere, I have booked a private consult for tomorrow just to talk through my fears and anxieties so just preparing a list of questions. But not sure what I should be asking
Hi,A private consultation seems a good idea. The issue is each case of Systemic Sclerosis is individual & shows itself in different ways.
I had a private consultation in 2017 whilst I was away abroad following a severe flu virus. This was my trigger to set off this disease!
It took lots of blood tests on two separate occasions to diagnose what was going on with my body.
I came home armed with a letter from the Dr plus all the results of the blood tests. The Dr had written that I needed urgent medical care immediately.
Mine was an aggressive form of the disease Acute Diffuse Cutaneous Systemic Sclerosis.
I flew home at the end of June. I went to my local Dr who had never heard of the disease! Problem No 1.
He referred me to my local hospital. Three weeks later no response! I went back to the Dr to find out what was going on. The local hospital decided I wasn't an urgent case ( without actually seeing me). Problem No 2!
Luckily for me one of my sister worked at a different hospital as a medical secretary. She enquired at her hospital & luckily for me one of the top Systemic Sclerosis Consultants worked there!
I went back to my Dr & asked for a referral to this Consultant.
Within a week I had an appointment & two days later I was admitted as an urgent case. I was in hospital for three weeks undergoing so many tests it was mind blowing! This was all before Covid & the strain all hospitals & staff are under now!
Really until you see a specialist in this field you won't be able to understand your individual case.
It takes time to digest all the information.
You can ask at the private consultation about the disease & how it might progress. There are so many different scenarios!
Until you see a top Rheumatology consultant in Systemic Sclerosis, have numerous scans, blood tests, lung function & heart tests, it will be difficult for you to prepare exact questions for your specific case.
Until you get to this stage you're really all over the place. It can frighten you to death reading on the Internet, so I'd stay away from that for now.
Good luck with your private consultation. I hope it helps! Xx
I agree with all the above comments and think it’s worth paying for a private consultation as the last thing you want is to be worried at this stage. Stress is not good for these illnesses. Like many I have no thickening beyond my fingers which happened over 20 years ago but worsening gut problems over the years. I’m a bit different to you and had a non specific (high RNP) antibody but checked every year.
Good luck at your appointment
Help- Itchy skin/dermatitis? 
Limited cutaneous systemic sclerosis and lung involvement question.
Raynaud's in dark skinned patients
Very very itchy skin.
Scleroderma and very dry skin
