I have been going through a series of test recently because I was getting chest tightness,I attributed it to GERDs and dysmotality,I had recently changed my PPI,however my Dr referred me to cardiologist nurse. She in turn ran test, ECG , 24 hour heart monitor and a CT angiogram with contrast.
Everything came back okay except the CT angiogram which also gives a calcium score.Wythenshaw also carried out a lung and FFR CT analysis, which help confirm the findings.
It showed I have high levels of calcification in 2 main arteries, 1 at 73% and the other at 84% .also stenosis, to be honest I was quite shocked with the results because I had an Echocardiogram in Dec before I went to the Royal Free and apart from some value regurgitation nothing to worry about ,I was told.
I am now awaiting a Coronary angiogram next Friday and then see what intervention is required moving forward, I have been advised possible treatment may be stenting or a bypass.
I have been looking this up to see if people with SSc are more likely to get this, I have read that people with SSc especially with the ANA centromere positive antibodies seem to be more at risk of Atherosclerosis.
I also have plaque build up of 50% in my cartoid artery and some plaque also showed up in my legs when I had a ultrasound scan.
Just to note my Cholesterol as been normal until the last 12 months when it increased to about 7 and I went on statins but couldn’t tolerate and I am now on Bempodoic acid.I feel I generally lead a healthy lifestyle and drink occasionally and walk daily.
I would just like to ask if anyone on the forum , have had heart conditions , or have been in a similar situation ?
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Buttsy
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Hi I am same diagnosis as you and also have high calcification of pulmonary arteries. Haven't had any further interventions about it so don't really know.
My medications all for SSc and Raynauds. 3x 25mg sildenafil daily, loperamide x2 at night and extra if going out for the day and won't be near a toilet. Omeprazole only x1 at night now. Prednisolone 15mg daily while I'm having a flare up but reviewed in a couple of weeks and weaned off them. And citalopram to help me cope with not ruminating on my condition and getting on with living. Also ibuprofen and paracetamol for pains in hands, feet muscles etc. My cardio exam said significant calcification of pulmonary arteries but no follow up. Would be very interested in any info about this aspect of our disease
At present I am not on any medication for Ssc and I am taking 4x Omega 3 fish oils for Raynauds. But I think I may need something more before the winter.I also take Levthyroine for underachieve thyroid and Esomeprazole for Gerds ect. Also on Iron tablets and B12 injections.
The cardiologist as put me on aspirin, clopidogrel and Ramipril and given me a GTN spray. Take Bempedoic acid for cholesterol.
So nothing for your calcification, unless some of your other medication works on the veins and blood flow.
I put in Atherosclerosis and Ssc on line and found a few things about a possible correlation. More about a Connection between Lupus and Rheumatoid Arthritis then Ssc .
I was in Manchester earlier this year for trial that Manchester health Trust are going to be running. It was held at Friends meeting house. It was a consultation with people all had SSc. They even gave us £50 for our time. Still waiting to hear if I'll be accepted on the actual trial they will be running. It will involve enhanced scanning that's being developed. Others on this forum may well have been at the consultation event
I don’t, as far as I’m aware, have heart issues despite having SSc. However I’ve not been at all impressed by the local cardiology department, who no longer give SSc patients here annual echocardiograms and we have to be re-referred with valid reasons other than SSc, to get another if nothing shows up 🙄
I’m sorry you have having signs and symptoms of early atherosclerosis - but at least it’s being picked up early by your hospital.
I did have carotid artery ultrasound back in 2015 which showed calcified arteries and I was worried silly because my mum had died suddenly 6 years earlier of severe atherosclerosis. But was told at the time it was age and weight related and I’ve since lost a great deal of weight from scleroderma GI so maybe would be different now if tested. I can’t see cardiology department agreeing to another now with normal echo earlier this year though.
But as the baffled coroner quickly established my late mum had never seen her GP or other HCPs about build up of classic angina symptoms which could have been easily fixed with a stent. I think she’d already decided it was her fate and refused to follow up symptoms despite me and others urging her to get investigated.
Very few die of atherosclerosis these days the coroner’s officer explained so I think my mum was extremely unusual. Stents are pretty much routine procedures in older people and work very well alongside cholesterol lowering drugs and dietary adaptions. I believe it can be associated more with connective tissue diseases than in general population and my rheumy and I suspect, with hindsight, that my mum had neuro-psychiatric Lupus, which might apparently have explained the rapid onset of her atherosclerosis. That said she was secretive about related symptoms, which I think probably went back for longer than any of us realised - and Lupus is associated with early onset atherosclerosis my rheumatologist explained. Her grandmother, also a trim and elegant woman like my mum apparently, died suddenly and young of same so definitely worth being aware of and asking for treatment asap xx
Hi Buttsy, I’m very sorry to hear that your test results weren’t 100% ok, I was really hoping they were. I’m afraid Echo’s can be variable, especially with different hospitals. My heart problems stem from a lifelong undetected congenital heart defect and not from blocked arteries although the treatment has partially been the same. I initially had a coronary angiogram, when the artery was found to be fully blocked (but by a blood clot) and my Consultant went on to do an angioplasty for a stent. The two procedures are virtually identical in that a catheter is inserted through an artery in your groin or wrist but for an angioplasty a stent is then placed in the artery (very simplified explanation) to widen it and allow blood to flow normally. This procedure takes longer but very much similar to an angiogram so you will either be sedated or in my case anaesthetised, as with angiograms it isn’t painful and a safe procedure. Unfortunately mine wasn’t successful but I had other complications so I can’t give an outcome but I’m still here. Worst case scenario you have to go for a bypass, try not to worry, it’s amazing what they can do these days (mine was 24 years ago) and everyone I know who has had bypass have recovered very quickly and with total improvement of their heart condition. My echo’s have shown up Pulmonary Hypertension but thankfully borderline, but again this is treatable. Sheffield Hallam is the centre of excellence for the North West for PH, they are very good.
I noticed you cannot tolerate statins I was the same and my GP tried several. The only one I can tolerate is ATORVASTATIN but you may have tried it already. My cholesterol is usually around the 6/7 mark. Wishing you the very best for next Friday, you will be well looked after and monitored closely. Usually you have to rest horizontally for several hours after the procedure before discharge but you get tea and biscuits or more depending on the hospital. Sending you a big hug, I know it is daunting but believe me you will be fine. 🤗🌻 Try not to think too far ahead.
PS It isn’t always about leading a healthy lifestyle, sometimes it’s genes or even as with other things in life ‘ the luck of the draw’, not much help I know. The body makes its own cholesterol so you could just be unlucky in that it’s your body and not you. I’ve never smoked, never been much of a drinker, eaten healthily, riding horses but still fallen foul, so don’t blame yourself!
Thank you ,so much for your reply and explanation,I appreciate it. Like you said you are still here ,which I am glad about ,and it gives me hope. I did have 2 Brain aneurysms coiled 9 years ago and they went in through my groin, which sounds very similar to the angiogram, but I was anaesthertised for that .The recovery was very quick for that too.
Yes ,I believe I have lead a reasonable healthy life and take regular exercise, does make you wonder if some people are more prone, than others.
Yes, I tried Atrovastatin first, now on Bempodoic Acid for cholesterol, not sure of my numbers since I started them because I haven’t had a blood test yet, but go tomorrow for that.
Sorry to hear about the Pulmonary Hypertension, glad it’s on the borderline and you will get treatment for it. Wishing you all the best too🤗.
I’ve only just read your post and and find myself in a similar predicament. I saw my consultant earlier in the year and told her of my shortness of breath and swollen left ankle, yet again. I had previously had my annual echocardiogram and pulmonary function test and they were apparently all ok. Subsequently she ordered a CT scan of my heart which I had mid July this year.
I had an emergency appointment with my GP a couple of weeks ago as my home blood pressure monitor was giving erratic readings and the ‘heart’ warning symbol appeared several times. They wired me up in the surgery and sent results through to Manchester who coni was not in AF but my GP suggested I contact my consultant re the scan results. I spoke to the specialist nurse who confirmed damage to heart valves had been shown on scan and ordered a further echo as a matter of urgency. As at today I’ve heard nothing and have my next appointment with consultant on 8/10. I am constantly short of breath and my anxiety levels are through the roof, so I have asked my GP to refer me privately in the hope the results will be available by my visit on 8/10
My partner and I have a vacation booked for 18/10 and there is no hospital on the island. I need clarification as to a) what exactly this diagnosis is and b) is it safe to fly
Like others with this insidious condition that keeps on giving, it is one endless fight for answers. On this occasion I am thankful I have the funds to pay to see a cardiologist and have the echocardiogram carried out. Next time I may not be so fortunate.
Sorry to hear of your problems, it does seem like an ongoing fight for answers and diagnosis, there really doesn’t seem to be any interaction between the different disciplines, so we end up chasing things or paying private. My GP like yours asked me to get in touch with my Rheumatologist I did this via email a few weeks ago , to ask for advise and if I needed any medication and if the medication I was on from cardiology had any impact on SSc. As yet no response to that.
I went for the cardiac angiogram on Friday and apart from a few bruises seem to be okay, however no intervention was carried out because the findings didn’t correlate with the CT angiogram and FFR analysis results. So on the CT it said moderate to severe narrowing in 2 main arteries and restricted blood flow. The angiogram finding said mild to moderate narrowing in the LAD artery and mild narrowing in the RCA both caused by calcification, no mention of blood flow restrictions, so as you can imagine I like you want answers as to what the results mean for me in the future.
I intend to get in touch with my local cardiologist nurse and the cardiologist secretary today and see if I can get an appointment for a proper explanation and were this leaves me , do I need more tests ect, different medications.I will possible go private if an appointment is along way off.
I am also waiting for an hysterectomy and need to make sure I am safe for that and get the Cardiologist okay before they will proceed with the operation.
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