Whilst waiting on my next rheumatology date, and for a dermatology appointment which will be in the interim, I have been keeping an eye out for any new signs.
I know that the hands often give clues around CTD. I’ve just noticed what I think is a single telangiactasia in the nail fold of my baby finger. This is new and the rheum wouldn’t have seen it at my initial apppointment back in May. Some of my other fingers have faint more purple-hued vessels but I have just one bright red one that’s clearly visible. My question is: is this worth mentioning when I speak to my GP in a couple of weeks? I’m wondering if just one little broken capillary is too insignificant? I have attached a pic.
As you’ll see, my nails are also in terrible condition… dry, flaking and with lots of painful hangnails 😫
Grateful- as always- for any thoughts/advice! X
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Winter_night
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If this is new for you and you are trying to get a diagnosis then I totally respect that all odd new skin related things might be pertinent. But if it were me I’d keep this one in my private folder because it’s not quite a nailfold capillary by the look of things - as they look for with scleroderma - it is just one little red spot. Although if it’s still there and your hands are being examined by the consultants then you could point it out if you think it shows that you might have Raynaud’s secondary to CTD perhaps.
I have to say my hands and face are littered with telengecstasia spots and my dermatologist insisted I had scleroderma or MCTD because of this feature. So when I saw a new rheumatologist (lupus) I asked and she agreed. Although the previous one had dismissed as ageing.
And the only reason it became relevant was because my Raynaud’s was late onset and was progressing and I had an antibody for scleroderma. However I know it’s the nailfold ones they are most focussed on diagnostically - mainly middle finger nails not the odd one on our pinky fingers. But by all means point it out if you are trying to get a diagnosis of Raynaud’s, MCTD or systemic sclerosis. I could be wrong and we know our own bodies and skin best.
Hi Old Ted, thanks for your response. The photo lost all definition in the process of uploading it - I think the image gets compressed - rendering the image fairly pointless… it’s definitely a broken capillary and it’s bright red, with what look like branches of a tree which are more faint. I have lots of them on my face and chest which I’ve never paid much attention to but I recall my GP saying watch out for finger nail changes and perhaps against my better judgement I started googling. I developed erythromelalgia in April, and it rapidly worsened. My GP had already referred me to rheumatology because of severity of fibromyalgia symptoms but since the onset of erythromelalgia along with severely dry eyes, hair loss and rashes, the focus is now on possible CTD. I’m in the process of having various tests but I won’t know the outcome until I have my next rheum appointment - likely to be early Oct. I have a dermatology appointment in Sept which Im hoping will help get at least some of the answers I’m desperate for. I’ve been unwell on and off for 2 years and I’m finding the uncertainty and the waiting harder than the symptoms to be honest! I’m particularly frustrated that my latest blood results (May - done immediately after rheum consultation) are sitting in a file somewhere and I can’t access them.
I think lupus and Sjogrens are foremost in terms of what the rheum is looking to rule out. I’m conscious there may be a fine line between being vigilant and confusing things by throwing absolutely everything I observe in the mix…! But I’ve gone from feeling horrified at the thought of autoimmune disease to feeling I just want to know and to get on with whatever treatment can possibly help. I know this uncertainty is not unusual for people with CTD symptoms.
I understand. Uncertainty is the pits. Hope you get some clarity soon. I’m not sure they look for telengecstasia in SJogrens, lupus etc just scleroderma and perhaps MCTD. Certainly mine have always been ignored but I have sine scleroderma which is very rare, likely diffuse and mostly affects me internally.
I know the telengecstasia are usually most prominent in limited scleroderma - formerly known as Crest. I have Erythromelalgia and Raynaud’s so always assume the red spots are caused by the neuro vascular extremes.
Thank you. Scleroderma sine sounds like a very tough condition to live with. It can’t be easy having something so rare - I guess it means you have to become an expert in it yourself. I know Raynaud’s can be very painful in itself - my Mum has arthritis and has had multiple joint surgeries because of severe osteo but I’ve seen her suffer most with flares of Raynaud’s, she would never say but I could see she was in terrible pain. It’s not an issue so much now she’s in her 70s and not constantly on the go and rushing around after us all. My aunt has lupus and has had some difficult times with that but I think that generation - women particularly - are very resilient and just sort of get on with it really! I really admire that but I’m not that strong myself!
Yes I really know what you mean about generational attitudes. To me as a 60 year old I look at posts here and elsewhere from younger generations and think wow what is this with neurodiversity and approaches to gender that my generation missed out on entirely?! It makes me wide eyed with envy in some levels - all the stuff that my parents, doctors and teachers missed with. On another level I think the stoicism of my parents and grandparents generations had a place too. But it’s a fine line that pushes me more towards courage being about not hiding heads in sand but facing our doctors squarely and saying “we want to know because knowledge is power”. Many older people have died or die now - not of stoicism but of ignorance I feel. They don’t know about or use or have access to the internet and they were told to believe and trust doctors. Well certainly that’s what my parents were like anyway!
I totally agree. I found this forum and started to read and post here at a time where I was at my wit’s end to be honest. It has helped me get through the last couple of months - as has being more open with people around me about how hard I’m finding the waiting. It a great resource - and I wish I’d found it sooner! I will be pitching up to my next consultation with a ring binder and a list of carefully thought through questions. The half hour or so you get is precious time! I was a rabbit in the headlights last time, unprepared and unsure of a lot of my answers.
Hope you’re not finding the heat too challenging. I’m in a room with blackout curtains and a fan on full…. And I’ll be staying until it drops below 30 again! 😁
Hiya, thanks for your reply… I had my first consultant rheum appointment in May and the rheum said he would see me again in 4 months time ‘to see how things are progressing’. My understanding was that the 4 month window was roughly to allow for all tests results to be back including dermatology referral he made which he said there would be a bit of a wait for. But I’ve subsequently be told that 3 appointments a year is generally what you get with NHS rheumatology.
My GP did the standard bloods .. ANA, immunoglobulin etc. twice during the period I was waiting for my NHS appointment and nothing conclusive came back but I have multiple CTD signs and she was fairly confident the rheum would start me on one of what she referred to as first line treatments. So I guess I went into that first appointment with expectations and came away deflated, with even more questions. Like I’ve said in another reply above, uploading the pic made the image far less clear. What I can see is a bright red capillary with branches that are less vivid. I also have visible capillaries that look more purple on other fingers and I have also noticed single very tiny red dots in random areas that look like specks of blood - one on hand, leg, chest, nose… I have erythromelalgia which may be behind these oddities I know. I think it’s safe to say that I’m *not* doing well with the long wait….! Too much time to think and to Google! Thanks for your reply though - I feel less daft for it! ☺️
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