new to the group with a query

[itexpat]

Hi everyone,

I have had Raynaud for a 4-5 years both in the hands and feet. This year it is affecting hands more. Up to a month ago it was diagnosed as primary, because antibody tests were negative (2021). then last month they came back positive with ENA Scl-70 at 63. Doctors I spoke to say this is not enough for a final diagnosis of systemic scleroderma. i am waiting to get further tests. My question (that my GP said he could not answer) is: if not ssystemic sclerosis what elase can Scl-70 positive indicate? Anyone knows about this? Thanks

[OldTed60]

I can’t answer your question re the titre / level because I carry a different (rare) SSc antibody. However I believe Scl-70 is highly specific to Systemic sclerosis but can often present as a false positive. But a GP isn’t qualified to say whether or not this is the case so you need to be referred to a rheumatologist asap. Do you have other symptoms apart from Raynaud’s because bloodwork is only part of the picture?

[itexpat in reply to OldTed60]

Thank you so much for your reply, I have been referred to rheumatology but do not have an appointment yet. So far I have not noticed any other symptom apart from Raynaud, which seems worse than last year. Just wondering that if ANA and ENa are positive that must mean something...the waiting for a diagnosis is sooo stressful...

[OldTed60 in reply to itexpat]

I really feel for you - in many ways this is the worst stage that you’re at. My first symptom was inflammatory arthritis - misdiagnosed as RA in 2011 when I was age 48. Then came Raynauds and then came Sjogren’s and GI dysmotility - all within about 3 years and all initially misdiagnosed as RA, Sicca, neuropathy and IBS-c and then primary seronegative Sjogren’s. It took me 12 years from sudden onset to get a definitive diagnosis of SSc even with my very specific (diffuse) antibody and I’ve been under about 7 NHS rheumatologists over that time. I had to go from Scotland to Royal Free privately to get unequivocally diagnosed by nailfold capilleroscopy. Hopefully none of this will be the case for you but just so you know that having Raynaud’s alone might not be enough to get a full diagnosis even with Scl 70 - although hopefully they will treat you preventatively anyway. X

[Nw6London in reply to itexpat]

Also look out for swollen/puffy fingers. I also have SCL70 marker and now very aggressive secondary raynauds in my hands and feet that has progressed with a vengeance! Puffy fingers are often overlooked but can be an early indicator alongside raynauds.

[itexpat in reply to Nw6London]

Thanks for this tip. My fingers do not look puffy, but I noticed my rings are tighter than they used to be...

[Lupiknits]

I’m glad you will be getting an appointment with a rheumatologist. GPs don’t have the training or level of expertise in this case. Scl-70 is associated with scleroderma. I am not a doctor, but it’s likely the Raynaud’s will now be relabelled as “Secondary” in that they are secondary to the autoimmune condition. They may do a nailfold capilleroscopy from which they can see inconsistencies in the blood vessels.

I hope you get your appointment and things move on from there.

[itexpat in reply to Lupiknits]

Thanks for your reply. I do hope they will do a capillaroscopy so that I can get a definite diagnosis. However, from what I understand, only a few hospital do capillaroscopies?

[Lupiknits]

I don’t know how many do, which is a shame because it’s such a very simple non invasive test. I hope you can get one.

[KathleenMary in reply to Lupiknits]

I've often wondered about capilleriscopies.I am really struggling with Raynauds this winter and have been prescribed numerous drugs which haven't helped I'm now on sildanefil .

I have been attending rheumatology clinics for nearly 30 years and have never been offered a capilleroscopy.

My diagnosis changed over the years from RA to mixed connective tissue disorder to scleroderma.

My cocktail of drugs keeps increasing... And as the latest of many locum consultants says "we are keeping it at bay

Apologies for my rant.. roll on summer

[itexpat in reply to KathleenMary]

It sounds like these diseases are difficult to diagnose and also to classify: is it scleroderma, connective tissue disorder, lupus, or....??? It looks like they are all a bit connected? Do medications slow the process or just calm the pain? For my RA nifedipine (2 day) seem to work, but I only started 10 days ago on them.