Ongoing Pericarditis

[Equinefan]

I started feeling unwell with left side neck and shoulder pain, a tightness across my left chest, and heart palpitations at the end of September 2023. I felt generally really unwell and took a week off work thinking I had a virus/flu, I didn’t have a cold or sore throat! I went back to work the following week, I still had neck and shoulder pain and chest tightness but felt better than the previous week. The week after this we went to Cornwall for a week and I became quite unwell whilst we were out on a walk. I just felt lightheaded and needed to sit down, I then got progressively worse as the week went on, particularly at night I couldn’t lie down in bed due to heart palpitations and this progressed to chest pain. I went to A&E when we got home and after lots of tests, they diagnosed pericarditis with a small rim of pericardial effusion. My heart was functioning properly. I was sent home and told to take ibuprofen 400mg 3 x a day.

4 days later I was struggling for breath and ended up back at A&E. This time they prescribed prescription ibuprofen. I was told they would expedite an outpatient Echocardiogram. Which was then rejected by outpatients a week later!

Luckily I have Beneden Health who agreed to a private echocardiogram and I saw a consultant mid November. He prescribed colchicine and organised an Echo, which showed that the pericardial effusion hadn’t changed but otherwise my heart was fine (thankfully).

I went back to the consultant last week as despite a month on colchicine and ibuprofen I am still feeling really unwell. He’s identified a high heart rate with activity so is prescribing beta blockers to bring this down and is asking my GP to refer me to a rheumatologist to rule out any other possible underlying conditions which may be causing this.

It’s been 13 weeks since I started to feel unwell with this and 10 weeks since I was diagnosed and despite doing everything I should, including spending 80% of my day lying on the sofa, I’m still struggling, with any activity even just sitting upright for any length of time, let alone doing anything more physical.

Has anyone else experienced this?

Have you recovered and if so how long did it take?

Have you been diagnosed with an underlying health condition?

I just want to get better and back to my normal life, but starting to doubt I will and it’s becoming increasingly difficult to stay positive!

I feel this condition is dismissed by the NHS because I haven’t got heart failure. Which is really frustrating given the impact it’s had on my life!

[devonian186]

"It’s been 13 weeks since I started to feel unwell with this and 10 weeks since I was diagnosed..."

Reading your message I am not sure you HAVE been diagnosed. Something is clearly wrong and I am not sure that problem has been identified. If it is due to pericardial effusion has anything you have been prescribed tackled the root cause.

It seems not as you are still suffering. Have the beta blockers made any difference? They take time to start working but I don't know what sort of impact is expected. Have you actually seen the results of your private echiocardiogram? If not it might be worth getting hold of a copy .

Any luck with the rheumatologist?

[Equinefan in reply to devonian186]

Hiya.

Thanks for responding.

I guess you’re right maybe I haven’t been diagnosed yet, the pericarditis could be a symptom of something else, hadn’t thought of it that way. The colchicine I’m taking is an anti inflammatory and should have cleared up the inflammation and effusion by now.

I’ve not had the prescription for the beta blockers yet, still waiting for the consultant letter to go to my GP for them to prescribe it. Same applies for the rheumatologist referral. The beta blockers are to slow the heart rate to allow the pericardium to recover (I think?).

I didn’t see the results of the echo only a letter from the consultant explaining what was found. Would they be any different?

I know i need to be patient but it’s really hard. 🫤

[devonian186 in reply to Equinefan]

The echo is likely to be more detailed than the Doctors letter, the latter is also often quite technical and many GP's are not that well up on heart related stuff.

So it might be useful to get a copy of the original report and a translation as they can be very confusing. Its worth chasing up any medications you might need as the sooner you start taking them the sooner you can see if they have a good impact or are immaterial to your condition.

As for being patient, if you are it could take months before anything happens, you do need to be politely persistent

[Equinefan in reply to devonian186]

Thanks will keep on pushing. I’m desperate to get my life back. I’ll follow up with the consultant for the echo report. 👍

[honeybubs]

Hi, it wasn’t the same for me but I was diagnosed eventually with heart failure. After being on heart tablets for a few months (I had heart symptoms over 10 years and wasn’t diagnosed). I started with neck and shoulder pain and discomfort and felt ill which I think I had the same symptoms before over the years as well. I felt really ill one night so my husband rang an ambulance. I went in hospital for 7 days. My tropian levels were up so they did all the scans and tests incase it was a heart attack. It was Pericarditis and Myocarditis which they call Myopericarditis. No tablets were given as they say just rest and not doing anything over months not weeks will get rid of the swelling and inflammation. They also found I had 34,000 extra ectopic beats as well. Long story short I now have a defibrillator and feel back to normal again as it’s stopped the palpitations. Don’t give up keep telling them you are unwell. They are dismissing the pericarditis and saying rest but you may have an underlying problem with your heart which could cause heart failure in the end. Good luck and keep updating us. Joy x.

[honeybubs in reply to honeybubs]

Sorry it should have read pacemaker with defibrillator.

[Equinefan in reply to honeybubs]

Hiya.

Thanks for replying.

Wow, that’s a lot of ectopic beats, how was this picked up? I’ve had a 48 hour ECG which showed rare ectopic beats, which they said wasn’t a concern, assuming because they don’t happen often.

Glad you’re feeling so much better and all has worked out well. Thanks for the encouragement, I’ll keep pushing 🙂 x

[honeybubs in reply to Equinefan]

I had lots of 24 hour ECG’s and all the tests you can think of leading up to finding out what was wrong with me. I’ve even had 3 angiograms over the 10 years. I had syncopes (near fainting) and falling but they kept saying it wasn’t heart related. Sent home from A&E with low blood pressure and was asked if I had problems at home and anxiety causes the symptoms I was having. Was very upset about this so my lovely husband got me a private consultation with one of the top heart specialists and I even had to plead with him to at least do an echocardiogram because he was just going on what the nhs had put on my computer file. He listened to me though and did an echo and other tests and they found I had 35% ejection fraction heart pumping rate and my hearts electrical system wasn’t pumping right there was a pause then two quick heart beats causing Bigeminy heart rhythm. I was ready to give up and not do anything but because I’ve got such a caring husband if he hadn’t have insisted going private I don’t know what would have happened to me. On the bright side now I am properly diagnosed I feel back to my normal self doing normal things with the CRT-D device and they’ve even sent me on an 8 week cardio course to get my strength back which I’m going to carry on with. What I’ve said to others is ‘you know your own body when something isn’t right so don’t give up until you get answers’. Good luck x

[honeybubs in reply to Equinefan]

Sorry I didn’t answer your question ‘how was this picked up’. Whilst in hospital for the 7 days I was constantly wired up to their machines and that was how they found the Bigeminy rhythm and the extra 34 thousand ectopic beats I was having which I could feel the palpitations all the time when it got to that stage. Hope you don’t have to go through all this it is probably something different for you but had to answer you as they only found my real problem because of going in hospital with the myopericarditis. X

[Equinefan in reply to honeybubs]

Thank you. You’ve had such a hard time of things for a long time. Thank goodness for your husband’s support. Fingers crossed it won’t take this long for me but it does make me realise that 13 weeks is not actually that long! X

[Scho1]

Hi, I’ve suffered with pericarditis and effusions now since 2006. You are not alone and rest along with colchicine, naproxen, celecoxib or such other NSAIDs.

I belong to a group UK pericarditis. On here there are hundreds of us some of whom have had pericardiectomy. It might help you to join so you can get many of your questions asked. One of our admins is part of a working group with several top cardiologists, rheumatologist, immunologists etc.

UK, Eire &Channel Islands Pericarditis group.

I myself am under various consultants to try to ascertain the cause of my chronic, recurrent peri. It is suspected there is an underlying rheumatology cause.

[Equinefan in reply to Scho1]

Thank you I’ll look to join the group that’s really helpful. It’s so hard to find any information about it and the most helpful stuff is from the US which some don’t apply in the UK.

I hope you get a diagnosis soon.

[Bhf7 in reply to Scho1]

Hi, where can I find the uk pericarditis group? I contracted pericarditis start of June 2023 and still have the symptoms now into jan 2024. 18 months ago had a heart attack and 2 angioplasty surgeries but the pericarditis is not related. Have been on colchicine to try to address and steroid dose has been tried but not managed to get rid of it. It is not too painful but gets worse with movement. Was recovering well from the heart attack but all on hold since June and just want to be able to get back to some sort of normal.

[Scho1 in reply to Bhf7]

Hi, it’s on Facebook just search UK, Eire, & Channel Islands Pericarditis Group.

Pericarditis can’t take time to recover from and some of us such as myself don’t ever fully recover and go on to become chronic recurrent. Several on the group have gone on to require pericardiectomies. Phil who is one of the group senior admins has had a pericardiectomy. The support and information in the group is phenomenal.

[Bhf7 in reply to Scho1]

Thank you. I have joined the group. I am sad to hear that you have not recovered and it’s ongoing recurrent. It must be difficult to come to terms with and manage.

[Scho1 in reply to Bhf7]

Hi there, I do hope you find the group useful. I certainly have and I too found the group through this forum. It was a relief to know I wasn’t alone and Phil put me in touch with his cardiologist. It’s very difficult to manage especially at the minute as I seem to have underlying autoimmune issues causing it. Whatever autoimmune disease I have is now attacking other organs including my pancreas.

We are all hoping NICE will approve arcalyst here for peri soon. It’s been a game changer for many across the world.

Every so often on the group there are live question and answer sessions with some of the top cardiologists, rheumatologists etc both from the UK, USA and Europe.

[Catkin-blake]

I was diagnosed eventually from a MRI with perimyocarditis, initially they thought it was a heart attack but not thank goodness, though it has left scarring on my heart as induced a cardiac 'event' . Main treatment for any heart inflammation is rest , rest, rest. To be honest bar taking beta blockers to slow your hear, colchine and rest there is little they can do , and by rest it is months not weeks to recover. I was told not to lift anything or do anything that puts a strain on your heart, and basically just sit and rest.I was diagnosed in nov 22, and it has taken til Oct 23 to be feeling 'normal' exercise wise, and I must admit like you I felt dismissed, while they thought I had a HA I was going to be offered cardiac rehab, once diagnosed , no cardiac rehab offered and left to my own devices, it was after 4 months I just started with small walks, and trying to keep my HR below 100bpm when exercising so not putting a strain on it. Having a smart watch was brilliant for monitoring my heart. At the end of the day it is just a muscle, and just think how we would rehabilitate a bad muscle tear in our limbs , gentle rehab

[Equinefan in reply to Catkin-blake]

Thank you for your reply.

So glad to hear you are finally feeling better and that resting and taking things slowly has worked for you. It’s interesting to hear about the 100 bpm. I’ve read about this but no one has actually said this to me. I brought a smart Watch after being diagnosed to keep an eye on my heart rate and it’s been really useful. My hearts doing upwards of 100 by just sitting upright, I can only get it lower if I’m lying with my feet up and some days it’s in the 90s then.

So maybe the beta blocker will help me.

[Catkin-blake in reply to Equinefan]

IT was someone on another group who had the same diagnosis as me that got told the 100bpm by her cardiologist as a guideline when starting to exercise. I mentioned it to my cardiologist and he was in agreement with this as a steer for me. it's all about resting and helping your heart work in a less stressful way while you have inflammation.

[Equinefan in reply to Catkin-blake]

👍

[Potter5678]

What you are describing is exactly what I went through about this time last year. After several trips to A&E with numerous tests performed, private consultation with possible diagnosis of myo and pericarditis, tests of mri and ecg unconfirmed the diagnosis. After all tests I've had, with everything deemed normal, I was told I was inventing it all. I still have very diminished pain through the chest 12 months on. I have my suspicions of what caused it but cannot mention it on this site!

[Equinefan in reply to Potter5678]

Oh dear, I’m sorry to hear this.

It’s so hard when you don’t feel listened to, I know how you feel. I’m thankful of having Beneden Health as I’d still be waiting to see a consultant again if I was waiting on the NHS.

I do get that it’s not life threatening (usually) but it has a massive impact on the persons life.

[EdtheDead]

I had a Heart Attack and was recovering well. Then I started getting serious chest pains so was rushed back to Hospital. Turned out the MI has triggered Acute Pericarditis. The Chest discomfort is constants interspersed with bouts of sharp stabbing pains upper left chest. It can be alarming and sends anxiety levels through the roof making the pain seem even worse I've been in Colchicine for 2 months and have 1 months left to take them.

Slowly but surely they seem to be having the desired effect as discomfort and pain is gradually receding.

Still no energy or stamina and doing anything even mildly energetic is beyond me at the moment.

You'll get there in the end.

[Equinefan in reply to EdtheDead]

Hiya. Thanks for your reply.

Having that type of chest pain after a HA must have been really scary for you. It’s good to hear the colchicine is starting to make a difference. My cardiologist did say that it maybe that it’s just going to take a little longer to work for me. So as you’re starting to see an improvement I take that as a positive and hopefully I will too.

I’m finding this really deliberating, heaven knows how you must feel having had this after a HA. Wishing you a speedy recovery.