Hi, SSc/overlap DM for 20 years (prednisolone, mycophenolate etc) Recent dx of Carotid Artery Disease (thankfully before any TIA or stroke)
My Q is - I'm in doctor led clinic on Friday & have been told that it is unrelated to SSc & that it's an age/lifestyle issue( I'm 62 & don't agree with the lifestyle bit except that my exercise is limited by disease)
I don't agree as I've found some scholarly articles online that suggest that there is a link (it's vascular!)
I'd be very interested in anyone else's experience. Plus I've yet to be referred to a consultant/care because apparently, it's rare to be found before a stroke (& this is meant to be helpful/comforting because it's an opportune diagnosis?! Help please.
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HJP7
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I’m not sure that this is same or similar but I had a carotid artery Doppler about 9 years ago, when still undiagnosed with Systemic sclerosis and Sjogren’s, but instead misdiagnosed with RA. I had this ultrasound after having a stroke-like turn that transpired to be a reaction to Tramadol and a symptom relating to a structural abnormality in my jugular vein. The Doppler showed a lot of calcified arteries with plaque and I was really freaked out because my mum had died suddenly 5 years earlier from severe atherosclerosis, undiagnosed. Unfortunately this runs in my family but it’s treatable with statins or even a stent if diagnosed soon enough. She had symptoms of angina for a couple of years prior but didn’t see her dr about these. She was slender and very active so not lifestyle related in her case. We think with hindsight that she had Lupus, which I believe can be associated with rapid onset atherosclerosis.
No one has repeated this test on me because it was just viewed as ageing - I was 52. But I get echocardiograms in keeping with having SSc and also PFTs and all fine. I’ve lost a huge amount of weight since this Doppler due to severe scleroderma gut. I get iloprost for a day a month, on Mycophenolate, Rituximab, Losartan etc and my cholesterol is now in range so I wouldn’t expect it to have worsened and I don’t have symptoms, no TIAs or strokes etc. Sorry I don’t know if stenosis comes before or after atherosclerosis - but I’d say that, given that SSc can affect any part of us with excess collagen, it seems highly likely that it can cause both atherosclerosis and stenosis.
The coroner for my mum explained to me that usually it’s caught sooner due to symptoms so this is why it’s now considered a rare finding. I’m really hoping they can see you and treat you urgently. I would ask your rheumatologist to intervene if you continue to get nowhere. Sometimes, with such a rare condition as SSc, we have to shout and in your case I’d do so asap! x
I have underactive thyroid, SSC,Raynauds, mild/moderate heart disease, spinal problems L4-L5 disc bulge and facet joint hyprotrophy and cervical spine degenerative disease and mild foraminal stenosis.
I have cartoid artery stenosis which was discovered 4 years ago at the time I was 52, I was under ENT and they sent me for a doppler test and that showed my right cartoid artery was 50% narrowed with calcification , so like you this was an opportune diagnosis,apparently they don’t do anything unless you have 70% or above narrowing or you have a TIA or stroke. I was horrified when I found out, but the nurse doing the test didn’t seem surprised.she explained it could be hereditary caused by high cholesterol.
I had a further 2 Doppler test which showed that it wasn’t getting any worse then they discharged me and said they don’t routinely monitor this, I would have thought prevention is better than cure.
Then in July this year I had some heart test done which included a calcium score, this came back very high for my age too, I then went on to have a cardiac angiogram and they thought I might need a stent but when they went into my arteries they found a lot of calcification but nothing impeding the flow of blood ,the worse one was in my LAD artery and this was estimated to be about 35% narrowed, and 2 of my other arteries also had some calcification.The cardiologist as put me on a daily aspirin and cholesterol medication and Blood pressure medication which he explained should help.my cholesterol and Blood pressure weren’t really that high either.He explained that if you have diseases that cause inflammation then this can make it worse, so that could be adding to the cause, unfortunately I think my health problem do cause inflammation.So I like you think it is related to SSC and is possible vascular.
Also I had my leg scanned a few years ago and they mentioned in that report that I had some calcification in my arteries there too.
After I found out about my heart,I got in touch with the vascular department secretary and she spoke to the vascular specialist who said he would do another Doppler test and I had a telephone appointment but he again explained ,they don’t do anything untill it much worse. I had the test on the 4th October,The nurse doing the test said from what she could see it looked like it hadn’t got worse and was still about 50% narrowed, however I haven’t recieved a letter from them to confirm this yet. (I must chase that )
I like you don’t believe it is caused by my lifestyle,I don’t smoke, I eat healthy and I walk daily and swim regularly as part of my physiotherapy.
I find it very frustrating that you do your best to look after yourself and these thing happen, I do believe it is possible beyond our control and related to health conditions.
How much calcification do you have ? How was it found and who diagnosed you ?
I would be interested to know what they are going to do if anything and if they will monitor it for you.
I would request a referral to a vascular specialist.
Hope you get sorted and it is treated if possible.
Was going to add ,if there is a connection and it is vascular related then why aren’t the wider medical community made aware and then In turn they can inform the patients, so they can be treated or monitored accordingly and it not just be put down to age/lifestyle.
This doesn’t appear to be happening at present, looking at yours and my experiences.
Just to add - I think, from my own experience - that it could well be hereditary rather than lifestyle or age related. I fully agree with you about prevention being better than waiting if it’s in context of a disease such as SSc or other or if we have a close family history as I do.
However my own hospital seems increasingly unconcerned about taking preventative measures and here we don’t even get the routine SSc monitoring ie echocardiograms and have to be referred by our rheumatologist each time with a long wait. Also I recall stopping AdCal D3 in 2019/2020 in favour of just D3 when I worked out myself that this could be causing calcium build up and a GP agreed. I now have osteopenia. I think we are just expected to accept many symptoms and signs as being our own problem until something drastic occurs and the NHS is forced to act
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