After a dreadful 2019 due to having 2 blood clots on my brain due to an operation on my head and the impact of lupus causing clotting to occur, I now seem to have developed a chronic resting heart rate of 115-120 beats per minute (normal range is considered to be 60-90 beats per minute).
Does anyone else out there have any experience of their sle causing elevated heat rate? I’ve been reading that lupus can cause inflammation to the lining of the heart which can increase heart rate.
I feel tired and breathless. I also wake in the night like I’ve stopped breathing and am gasping for air.
I’m not an anxious person, but the constant rapid heart rate makes me feel jittery and anxious, it’s miserable!
I’m due to see my rheumatologist this Thursday, so I’m hoping he might be able to shed some light on the situation.
Any shared experiences would be greatly received.
Many thanks,
Sarah
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Serser
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24 Replies
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Serser, I would definitely take this up with your doctor ASAP. So many studies currently being done about resting heart rate importance. Even an 80 or 90 is really bad and a 60 or 70 only fair. Please call, and good luck.
Thank you Brooksidecourt, I am trying to ASAP. It is concerning. I’m seeing my GP and rheumatologist so I’m hoping maybe one will refer to a cardiologist as pulse is consistently high! It’s very draining, makes me feel ready for bed at about 7pm!!
Hi Serser, I sometimes have an increased resting heart rate. Normal for me is 58 or so and it can go over a hundred for no reason. I mentioned it to my GP and I've had a baseline ECG and I'm on a list to borrow a home test kit to illustrate my heart rate when it happens. Shame they can't take the data from my watch which is how I know it happens.
I've also had some other weird symptoms like sweating (urgh) and dizziness. When I looked up sweating in the lupus Encyclopedia last night to see if it was a lupus thing, it mentioned increased heart rate, dizziness and breathing issues, some of which sounds like you can relate to. It says that it can be a lupus thing but can be related to meds. Are you taking anything?
When I get home later I'll take a photo of the paragraph and try to upload it here in case it is of use.
I am on quite a few meds due to lupus and blood clots, but I asked my haemotologist if he thought the tachycardia was due to any of them and he said he didn’t think so. I’m going to double check with the rheumatologist on Thursday though.
I can relate to all the symptoms you describe. I’ve been taking my pulse on a daily basis since my op at the end of January where it was initially picked up that I was tachycardic, and I’ve never been below 110. It’s usually 115-120, sometimes even higher than that!
There are also occasions where I’m missing beats-both myself and my mum are nurses so are used to taking pulses and feeling for abnormalities.
I don’t know?? I’ve been looking at POTS today as that can be linked to people with sle.
It would be useful to see a photo of your passage, knowledge is power at the end of the day!!
Thank you for taking the time to respond to me, I really appreciate it xx
I can't add the picture, so I'll paraphrase. The heading is: Autonomic Disorders.
The autonomic nervous system is responsible for the electrical activity of all the bodily functions over which we do not have conscious control. Autonomic nerves keep the heart beating correctly, constrict and dilate the pupils, keep muscles of intestinal tract moving and cause sweat glands to secrete sweat when someone is hot or excited. They also control some things that you can sometimes control yourself, such as breathing and blinking. SLE can affected these nerves but usually not significantly in the vast majority of people. However, if these nerves are affected, it can lead to constipation, dizziness when standing up and excessive sweating, among other difficulties. These problems can be due to medications which makes diagnosis challenging. If they relate go SLE, treatment is with steroids.
I hope that helps in some way. Good luck for your appointment, I'll keep a look out for your update.
Hi Serser! Heart rate variation especially tachycardia (high heart rate) seems to be common in those with a history of neuropathy. The nerves that control your blood pressure and heart rate can be affected causing something called dysautonomia or autonomic neuropathy. This is akin to POTS as mentioned in a prior post.
With that being said, there are many other causes of tachycardia that should be ruled out if it is causing you breathlessness. If you have a history of clots, pulmonary embolism should be ruled out. Thyroid problems can also cause a high anxiety looking picture.
If you get dizzy, can’t breath, or start swelling, I’d go to A&E. Your history of clots would be concerning with current picture.
Please let us know how your appt goes on Thursday. Sending well wishes. ❤️
I too have a rapid heart rate or tachycardia and mine is linked to inflammation of lining of heart or pericarditis that you mention. I'm not an anxious person either so been put on a beta blocker to slow it down which has taken the symptoms away like dizziness and palpitations as well. It's at 100 now which is lower. For the chest pain I take colchicine which is a strong anti inflammatory that really works. It's a horrid thing that you've always got to think about and I'm sorry you've had such an awful time with clots and op's. Hope I've helped and you get on well at your Rheumy appt. do keep us posted. Xx
Yup, I have POTs and recurrent pericarditis as a result of SLE. It's a real juggling act to manage. It will be interesting to see what your device shows.
Hi yes I’ve just come out of hospital, I had a resting heart rate of between 101-127. It would shoot up to 140 if I stood up or used the loo and breathless, also my oxygen drops.
Chest x-ray clear, ct scan normal, started on heparin injections. The one doctor felt it was the SLE, but no clear answers, I’ve left a message for my lupus nurse at the clinic, it’s something only my Rheumy can sort out.
Whatever it is it’s not nice, I’ve had pericarditis and 2 pneumonia’s in the past.
And my mom had antiphosphalipid syndrome also and SLE.
I’ve just ordered the lupus book by Dr Daniel Wallace the newest update, also downloaded the lupus app from Apple put my symptoms down daily ect.
Are you on steroids? When I was first diagnosed and on 60 mg of prednisone, my blood pressure was high systolic 150+ (normal for me is super low, even 90s) and my heart rate was also abnormally high. All that went away when I tapered down on the steroids.
Yes I am but quite a low dose on 7.5mg, I’ve tried lowering it to come off it, but my mouth swells and I get horrible ulcers in my mouth that impact my ability to eat, so I’m sort of stuck on that 7.5mg dose frustratingly!! X
I have remained on 2.5 mg for years myself and probably will for life. My symptoms are stable and I don’t think I’m having any major side effects at that dose. My rheumatologist says she has patients that just need that low dose of prednisone on-board to keep them stable. Steroids are both the greatest thing in the world and the worst—-they can help so much but the side effects!! I would think that your dose is probably low enough not to be causing your tachycardia but hopefully your doctor can get to the bottom of why you are experiencing this!
Couldn’t agree more! I love ‘em and loath them at the same time!! I’ve developed that moon shaped face and put on weight since being on them, but it’s so lovely not to have a constant, sore mouth that it’s worth the sacrifice!!
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I had my pneumonia vaccine at the end of the year though so that might give some protection. 
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