For the past few weeks, I’ve been having high heart rate (getting occasionally to 120 while sitting, even 140), regually over 100 when standing. It seems to have started about 3 weeks ago, when I came down with bloating, nausea, wozyness/dizzines and brain fog. GP thought I might have caught a stomach bug or gastroenteritis. Fast forward another week, and I realise my heart rate is high, I’ve had this before whilst fighting an infection, however, add that to the nausea and occasional chest pain, I took myself to A&E. I also skipped my Amgevita injection, thinking I had an infection. Blood test all come back normal, ECG, normal, although 3 nurses and 1 doctor told me they felt skipped beats whist checking my pulse. They also did a chest X-ray and CT, ruled out heart attack and blood clot. Told to go away and monitor heat rate, and symptoms. Nausea, wooziness/dizziness and brain fog continue on and off, heart rate jumps to 100 and above when sitting and standing (wooziness worse when standing) , in the low 80 when lying down/sleeping.
Go back a week later, told all blood tests look normal, however chest CT spotted fluid around the heart, was told because I’m young (44 next month) they are not worried about it, and that it’s usual for those with inflammatory Arthtitis to have this. Been told that they will follow up with more scans on my heart before discussing next steps, they also think I may have POTs, but I need these symptoms to continue for at least 3 months before they will pursue/consider a Pots diagnosis. Although she said she would hope that they would get better over time, if not go to GP. Also said that my symptoms are not linked to the heart fluid (although I have 4 out of 5 symptoms when looking this up).
Has anyone with RA/ inflammatory Arthtitis been diagnosed with fluid around the heart, and what was your experience. I’m seriously considering stepping down from my management position, as it feels like it’s one thing straight after another (had to have nearly 3 weeks off at the start of the year due to a chest infection) , and right now with these symptoms, I cannot do my job justice.
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seronegativeRa
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I am seronegative with RA.I haven't been diagnosed with fluid around my heart, but I understand your frustration with the medics.
Last year I had regular tachycardia and hypertension, my GP dismissed it, yet I was sitting in front of her with a resting heart rate of 108 and BP of 150/110 with profuse sweating and feeling dizzy when bending over.
I saw a different GP who sent me for an ECG and chest xray, both normal. My cholesterol was 8.3. He started me on antihypertensive medication. I now take losartan, Bisoprolol and amlodipine, things have settled somewhat. But I am still mildly tachycardia and hypertensive. I also now take a statin.
My rheumatologist suspects it is the JAK inhibitors that are causing both the tachycardia and hypertension, but I decided to stay on them at that time. I see him again next week and suspect that my meds will be changed.
The point of my response: take alternative views if you are not happy with what is being advised.
I definitely would not consider giving up a job I presume you worked hard to get …when qualified medical doctors have told you they are not worried.
I know , easy to say....but can you try to take a planned break from your job,& in that time ask your GP to refer you, privately if necessary, to a consultant who will carry out any further necessary tests to put your mind at rest?
It could now be anxiety that is causing your tachycardia……& you could find speaking to maybe a Consultant cardiologist will help make your condition clear to you….& help you to move forward.
Don’t do anything too hasty re your job, as AC says, can you take some time off or work less hours for a bit and see how you go? I do hope you feel better soon, it’s very worrying when we have symptoms like that but your doctors seem to be on the ball so that’s good 🤗
I had a similar experience. I noticed after I had my stroke, that the slightest effort had my pulse suddenly shoot up. I would go for a gentle stroll of 2mph, and suddenly would feel my heart pounding. My Fitbit would show my pulse running at over 180. I had an echocardiogram, that showed my heart was enlarged, and the pericardium around the heart was showing up white, indicating inflammation. I was told like you, that it’s common in rheumatoid conditions, and that they weren’t concerned. My GP started me on Bisoprolol to slow the heart and make it pump more effectively.
Then a year or so later, noticed that BP would shoot up from 110/65, to 180s/110. I had a 24hr monitor that confirmed when resting my BP is fine, but shoots up, even standing prepping veg. I would notice that I got severe head sweats during these episodes. I was told again, it was due to the enlarged heart. This time they started me on Ramipril. Bizarrely, I had a bad rectal bleed early March, lost close to a litre in total, and my haemoglobin dropped from 135 to 103, which I assumed would result in my heart racing again, but it’s not, although I’ve had to stop the Ramipril as my blood pressure is always low now.
Like others say, I wouldn’t rush to make any decisions re your work. My racing heart and BP issues, have been controlled on these 2 meds. I was slightly older than you at 52, when mine started, I’m 59 soon, and don’t get the racing heart now. If your Drs aren’t worried, I’d take comfort from that.
I wouldn't know about the inflammation and fluid around the heart thing, but as you were describing your symptoms, I did think POTS. My son has it. POTs UK have a good website and a page on the different possible causes of POTS.
Hi Just to let you no, I went for a scan on my liver, kidneys, and, when he finished he told me he didn't want to alarm me but he'd found fluid round my heart sac. I was terrified I was then fast tracked for a echocardiogram, which confirmed my heart was working normal, no abnormalities. Then had to have a repeated one in 8 months time. (Just to see if the amount of fluid had increased/ decreased) that was fine, it stayed the same. And was discharged. But told if I ever had chest pain etc to ring 111 or A n E this was when I was first diagnosed about 3 years ago. I suffer from a lot of chest pain, as I have acid reflux really bad, because i have a hiatus hernia, hopefully you will have a echocardiogram to check if valves/ and all pumping is as it should be, I'm 55 but this was when I was 52 let me no how you get on and good luck x
I had pericardial effusion and pleural effusion which is being treated by prednisone and currently doing the job at removing it but I’m about to start immunotherapy which I will be on permanently. My autoimmune condition is yet undiagnosed so don’t rush into anything as it took a year for me but I didn’t have a rheumatologist on board at the start. You have a rheumatologist who can start treatment and my daughter who is now 40 has had pots for 7 years, no treatment but she’s learnt how to manage it, got a degree and is becoming a mental health nurse so please don’t give up your job, wait and see what happens, it’s very early days.
Thank you for all your positive stories and words of encouragement.
I saw my Rhemy nurse today, and she's asked me to pause my Amgevita for 4 weeks, as the symptoms I've been having are listed as rare but possible on these meds. I've also finally been booked in (this week) to see the Rheumatologist in person, which I haven't seen since Feb of last year, and had one 10 min call in March/April last year. Every other appointment with the Rheumatologist has been cancelled and replaced with the Rhemy nurse (she's great when I can get hold of her/see her). The nurse also admitted they should have been monitoring me more closely (my Biologics review with a Rheumatologist was also cancelled, should have been in Feb this year). My echocardiogram is booked for next week, and I'm not making any drastic decisions on work as of yet, I will continue to push through and monitor my progress and see how it goes.
I'm worried that my arthritis symptoms will come back with a vengeance (they have been mostly under control, bar the stiffness), but Nurse assured me there are other meds if it's found that the Amgevita is the cause of all of this.
Hi. I'm sorry to hear you are having problems. Great you have an appointment with your rheumatologist. It sounds like you need one. However, as others have said take comfort in the positive aspects of the results so far.
I have had heart issues for several years now that still hasn't been totally solved. I had severe palpitations that were pounding and made me very faint. On a number of occasions, I had severe attacks and nearly collapsed. I've had monitors over the years but it's never managed to capture the event, however, they have found an extra heartbeat which is very common and my blood pressure was extremely high. I've had an echocardiogram and all results came back ok. I was prescribed blood pressure tablets which have helped, after finding the right one for me. I've also cut out caffeine, which I'm sure has also eased the symptoms. However, after seeing my rheumatologist last week she thinks I should have been referred to a cardiologist and so is writing to my GP. One of my GPs thought it was my long-term use of steroids but my rheumatologist doesn't think so, which is why she wanted a cardiologist's opinion.
I'm still having the palpitations, but they have reduced since taking the blood pressure tablets. Our meds and disease can affect our organs as well as our joints, so it's always difficult to know what's going on at first.
I know it's unnerving stopping your biologics but I'm sure they will find another one for you. There are plenty to choose from.
As for your job, as others have said, don't do anything in haste. I was made redundant due to being in and out of hospital a lot and it affected me emotionally, so if you can, see if you can navigate your way around your job as I'm sure you had to work hard to get where you are.
Sending you loads of luck and best wishes that it is sorted soon.
hi. I’m 44 also and have had several spells like this over the last 4 years. I was diagnosed with RA a year ago, but have been ill since 2020 - at the time I was told this was covid/ long covid.
I have been on methotrexate since Aug - but it’s not working- so have come off it this week.
But I collapsed 3 weeks ago and was taken to A&E by a friend. I had really high blood pressure, was in and out of it for hours and was a bit of a mess. They admitted me for 5 days because they were concerned about my heart. But a 24 hour tape and several ecgs showed nothing up. They ruled out pots too
But I am feeling worse now than I did. I was clearly brewing a flare which is now fully out. They’ve upped the prednisone but it’s not enough. I have pain in my ribs now - which in the past I was told was inflammation due to an over reactive response to covid. I have been signed off work by the gp for a week - who told me I was catastrophising.
Like you I’m concerned about keeping working, I feel like I’m letting them down, although my head teacher is super supportive as her best friend is also going through this. I figured I’m going to go back next week and see what happens. Don’t give up yet - see if you can get through this phase and make a decision when you feel better.
All I seem to get told is that they are only concerned about pain in my joints. But i am aware of the inflammation in the rest of my body more - the brain fog, fatigue etc and I feel is harder to function with.
In terms of blood tests - mine show anemia and when I feel like this my blood oxygen drops significantly. Yesterday it spent most of the day at 89%. But otherwise everything else looks normal. Crp was rising- but was put back on prednisone- so that will stop that.
I hope that you are feeling better soon!! It’s scary but hope that you have the support network around you to help
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