Scary Morning! (Pericarditis)

[Londonlupie]

Hi all,

Hope everyone is doing well. I had a bumpy start to the day after being woken by a ball of pain in my chest at 5.30am. I decided to get up and move to the spare room and found that it was more manageable when sitting upright, but the pain would continue to surge at intervals and was aggravated by breathing.

I became very concerned. I'm accustomed to random chest pains but this persisted for more than an hour, so I called 111 and was called back by a doctor who was very concerned. I took myself to A&E...

Two ECGs, blood tests, and an X-ray later, I was told it was most likely pericarditis. Another thing to add to my joyful list of symptoms!

I'm sure many of you have experienced this as it is common with lupus. Is there anything anyone has found to be a trigger, or any good coping mechanisms? It was very disabling for hours, and now has settled a little.

I should have seen something coming as my left hand decided to flare up yesterday - no pain, just redness and swelling.

Stay well all,

Alex

[Luppykate]

Hi,

I been having that ball of chest pain for few days, it's awful... I find if I lean forward it helps... But its all consuming g pain. I haven't gone to 111,yet, but may well do of gets so bad again. Hope it's improving xx

[Londonlupie in reply to Luppykate]

Hi Luppykate,

I'm sorry to hear this! It's a very scary feeling and difficult to manage for sure. Mine is at its worse when lying down or bending over. When sitting still I forget about it but as soon as I'm moving around again it comes back.

I would sincerely recommend you contact 111 or a GP as soon as possible, as any chest pain is not worth ignoring. The A&E doctors told me that if I have another episode after this one to go back to the hospital, as they don't want to take chances, especially with the cardiological issues associated with lupus.

I hope you're able to find some respite from it soon, and please don't leave it too long just in case

[Luppykate in reply to Londonlupie]

Thank you so much. Yes I will be speaking to gp, and or hospital. I have a specialist lupus nurse too to access Monday. Like you, it's eased when just sitting still. Also found a good pain relief, o had from being in hospital, nov/Dec, so taken those and it's helped, but not for too many days so will get checked. I just can't bare thought of going to A&E... Had so much of tjos oct/Nov ect, vile, as have to go alone due to covid.

Thanks for your kind reply and advice. X

[happytulip]

A typical feature of pericarditis is that it improves when sitting forward and is worse when laying back or flat.

[Akuamama1956 in reply to happytulip]

Good information thx

[misty14]

Hi londonlupie

Sorry to read of your chest pain and diagnosis of pericarditis. Its a very painful and scary thing.

Could i ask if in A&E they recommended any trestment?. What drugs are you on for your lupus?.

Ive had this condition quite a few years now and what really changed my life was the powerful anti- inflammatory colchicine. They give it for gout but use it as a diagnosis aid for pericarditis as it responds well to it. Also the NSAID celebrex is another good treatment for it as are steroids. These were all given to me by my rheumy over the years so a thought is are you due a review with yours and you could discuss it with him.

Have you had your vaccine by any chance as ive had mine and got a flare of pericarditis afterwards?.

Do hope you improve with lots of rest and dont have to go back to A&E. Not nice!.

Keep safe. X

[Londonlupie in reply to misty14]

Hi Misty14,

Thanks for your reply! I was only told to take ibuprofen and paracetamol for the pain, but will definitely bring this up with rheumy next time! I'm hoping it subsides a bit but I know a lot of people with lupus have it chronically or remitting...

I'm on HCQ for my lupus right now, occasional steroids for recurrent chest infections with pleurisy.

I had my vaccine back in January, which did make everything flareup in general but not pericarditis. My hand was swollen and inflamed yesterday though, so seems inflammation is popping up all over as usual.

Stay well and thanks for the great advice!

Alex

[misty14 in reply to Londonlupie]

Hi londonlupie

Hopefully, the pain will settle with ibuprofen ,rest and this will be your only attack. I've been unlucky in having it more chronically but it does relapse and remit even for me. Sounds like your generally flaring as your joints are painful as well. A lot of us are flaring due to stress and the vaccine. Glad you've had yours though as I am about having mine.

Its good your not on too many drugs for your lupus. Maybe HCQ dose could go up if it doesn't settle on its own.?. What dose are you on?. Its good you've got options for treatment and its all about juggling drugs with us to get the best outcomes.

Hope you improve and keep safe. X

[Eddie66 in reply to misty14]

I agree since taking colchicine, the instances of "chest pain" are now minimal and easily relieve when they do occur. Often cold can trigger this for me.

[Akuamama1956 in reply to Eddie66]

Yes the cold does trigger it thx

[misty14 in reply to Eddie66]

Im so glad eddie colchicine has helped you so much with this.

It changed my life with it too when my Rheumy prescribed it. I have to watch the cold too, its so like angina!. Take care yourself in this cold snap and keep safe. X

[Hidden]

Sorry you’re suffering in this way. I don’t have Lupus officially but have overlap CTD with sjogrens and systemic sclerosis. During the first lockdown I suffered very similarly. I assumed that it was either severe indigestion or spasms caused by bulging discs in my neck. I phoned the GP to ask for some diazepam as this is prescribed for occasional use for my muscle spasms and I’d run out. I described the pain and he insisted I phone 999 there and then. Paramedics arrived and ran ECG and were confident that I wouldn’t need to go to A&E as I’m shielding.

They went to call the A&E and came back apologetically saying I’d have to be taken to A&E because of my conditions and history. It was high summer and, like you I was given a battery of tests to exclude heart attack.

Once this had been excluded the young doctor just sent me home with no explanation at all or suggestion about what I could do. She said her job was only to exclude heart attacks not to diagnose and she wouldn’t discuss whether either of my CTDs had played a part.

Since then I’ve had several more of these episodes - mostly at night. Like you and others say it relieves when sit up and I lean forward. Due to my risk of pulmonary arterial hypertension I’m very overdue an echocardiogram and wonder, when I finally get one, if this inflammation would show?

I just looked up to see whether it’s also associated with Sjogrens (I knew already that scleroderma is high risk for heart) and found this page - which will mean that if this happens again i will request a proper diagnosis rather than just excluding a heart attack. It is very scary and painful when it occurs but I’m now really phobic about going to A&E. creakyjoints.org/news/sjogr...

[Potatoheat]

My Pericarditis seems to have flared a bit since the vaccine. Had a good walk today and that helped. Also lots of indigestion. ECG and bloods on Weds and chest xray but I think it's just got be got through. Hooe you feel better soon ❤

[MelOctober]

Hi Alex,

Yes I have had pleuritic pain... may not be exactly the same, but it’s definitely scary and painful. Hurts when I take deep breaths etc. I get it about once or more yearly. I have found 4 ibuprofen help lessen the pain a bit. I also sometimes have to go on prednisone therapy for a week.

I’m sorry you’re feeling this l!!

[Eddie66]

Ask your Rhymy if Colchine would work for you