Hi I was diagnosed with sle when I was 19, and every flare brings a new symptom or illness to add to my list. I am anti ro and la positive with antphospholipid anti bodies and factor v leidin, which makes me a ticking time bomb for a blood clot ( thankfully none so far in heart lungs or brain but two in placenta while pregnAnt which caused a still birth at 20 weeks and a preemie baby at 29 weeks. I also developed sacro illitus and hashimotos. My most recent flare has brought with it ectopic heart beats or pvc’s which are usually benign but in my case are happening extremely frequently (usually one or two a minute all day every day) and are giving me terrible side effects such as shortness of breath, dizziness and chest pain. Needless to say this is very scary as I sometimes feel like I am having a heart attack. They are investigating for the cause of the pvc’s which they think might be myocarditis or pericarditis? If anyone has had a similar experience could they please share with me their experience of this, ie. Symptoms diagnosis and prognosis and treatment?so I can understand it better and be less scared or even just more informed. Thanks everyone xxx
Yep- had them a long time ago and only rarely in the past few years. It is possible that they are not related to your lupus at all-fairly common in young women, thyroid imbalances can cause also and sometimes the cause is never known and they just go away. The sensation of skipped beats is disturbing but usually benign especially since they are only one or so a minute The ectopy arises from the atria (very benign) or the ventricles - as you are not on medication to control is a good sign. Things you can do to lessen is of course the good health things like less stress and lots of rest. You should avoid smoking and intake of caffeine - no coke coffee tea chocolate etc as these tend to cause cardiac irritability
I have protein c deficiency and positive antiphospholipid antibodies but only have superficial thrombophlebitis so far. Are you on blood thinners? ? I also have ectopic beats that often are very painful and violent, feels like im being electrocuted! I’ve been on a beta blocker to help with the palpitations. I’ve have all the cardio tests and the only abnormal was the heart monitor picking up the extra beats and my echocaridogram was moderately abnormal around my lower right ventricle with helped explain the “electric shock” feeling. Just had a new echo last week since it’s been about a year1/2 since the last … try not to jump to conclusions or self diagnosis… hopefully all the rest of your test come out fairly normal 
Thanks guys that’s very helpful. That makes me feel a whole lot better! Did either of you experience extreme fatigue with this? It just seems to have knocked me for six!Dawncelest, yes they have me on inohep and aspirin.
It wouldn’t let me write any more there so had to post it. Dawncelest I am sorry you have so much pain with yours also but I am so glad to hear somebody else is getting pain with it. The doctors seem to think that it was weird that I was getting chest pain with it which freaked me out even more! It exactly as you described like am electric shock!
It’s always nice to know you’re not the only one
I know exact what your talking about. Dairy isa huge trigger for pcv take coqten excersise low fat meats… fat seems to trigger it godbless
Thanks for the replies guys. Lone wolf the pvc’s started a year and a half ago and have gradually gotten worse and then with this flare they just went out of control. So I don’t think its from an infection but it’s good to know ifs if I do get an infection I can keep an eye on it and see if it gets any worse. Jenelle thanks for that information, I might just have a look at my diet and see if that will help at all. X