Hello. My lupus has been in remission for about 4 years so I’ve not been on here for a while. I was diagnosed with Lupus in 2010 with joint pain (never had any organ trouble, ESR has been low since 2014).
On the weekend I was taken into hospital by ambulance with suspected heart attack and admitted to the Cardiac Unit. After lots of tests I was told it wasn’t a heart attack but Pericarditis instead (inflammation of the Pericardium - the protective tissue around the heart). I was discharged and now recovering at home on painkillers (both paracetamol and ibruprofen). ESR is still low (was 15, then 10).
Has anyone else had something like this happen to them?
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Maya23
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Hi, sorry to hear you've been unwell after such a long time. The same thing happened to me around April last year and like you I was rushed to two hospitals with a suspected heart attack, I also spent 4 days in the cardiac unit. For me I think I was so taken aback by events that the reality never really hit home. I woke up in the early hours with a "creak" in my neck and couldn't get comfortable due to the pain, anyway went downstairs so I wouldn't disturb my partner and it did ease slightly whilst I was sitting but not for long. Contacted GP surgery when it opened and arranged a lift down, I must have inwardly suspected something as I packed a case. Needless to say, got a telling off from GP for waiting and like you, ended up in hospital. Thankfully nothing like that has ever happened again and I hope it'll be the same for you.
Sorry to read your lupus remission has come to an abrupt end with pericarditis. A very painful and scary condition but it can be treated!. I've had years of this happening and been treated with Celebrex an NSAID that's specially good for this type of pain. Steroids and lastly an anti gout pill, colchicine which is another anti inflammatory. That one for me has really improved my life with it, brought it under control better!. Hopefully yours will be just a one off like your other correspondent but if not then there are these other possibilities!. I hope you feel much better soon. X
I think I've been unlucky Maya and have a chronic version of it. You could be very different hopefully. Hope you've got good pain relief now and you feel much better soon. X
Having Fibro makes it hard maya. Good idea to talk to your GP as he could change ibuprofen for Celebrex which is better for pericarditis and better for your tummy too!. Good luckX
Well I it’s been nearly a month since first onset of Pericarditis and it was almost completely gone (apart from the odd twinge) but last night it started flaring up again and today it’s quite bad. My Rheumatologist has made an appointment for me next week for heart echo and to see him straight after. I think I’ll be asking him about the drugs you mentioned!
That's exactly what pericarditis can do, it goes away and then can flare up again!. It's good your Rheumy is sending you for a heart echo. It's to check for any damage or fluid round the heart!. I had one which was all clear thankfully!. Those drugs transformed me specially the colchicine. It's specially helps pericarditis so is also a way of diagnosing it! If it makes a difference. Do let me know how you get on. I'm sorry your suffering again. Take careXx
Would you believe it I’m back in hospital today, with the chest pains and feeling breathless and dizzy. I walked into town this morning which made it all much worse, so ended up coming into hospital from GP surgery.
First round of tests show nothing much. Heart echo fine. There has been talk of colchicine so fingers crossed they try that next!
Hi maya,so sorry your back in hospital but I always found exercise made it worse!. Glad your tests are ok , mine were too and I'm pleased your doctors know about colchicine!. Fingers tightly crossed it works and your home soon. Keep me posted and Take care. X😊
Hi Misty14 it’s been a month since I got out of hospital again and I thought I was better, been taking Colchicine, then last night the Pericarditis flared up again (but not as bad as last time) but it’s wiped me out today. So I’m guessing this could be part of the picture of it being chronic? The really weird thing is that it seems to flare up at the same part of my cycle (on day 8 or 9) each time!! Do you think I should go back to my doctor? I’m nearly run out of Colchicine now.
Sorry your suffering with pericarditis again. It's a condition that varies because of the inflammation so it can do this. Interesting you've identified your more inflammatory at your cycle!. I was too and my Consuktant at the time said I could take extra steroids for a few days then bring them down when worst over. I'm glad you've found colchicine helpful. What dose were you taking?. Could you increase it now?. It proves its pericarditis as it's helped you. And also good this flare is less strong because of it!. Were you given advice in hospital how to take it ?. I would go to GP to get more . Hope your better soon. Take care. Xx
I’ve just got home from hospital. I called 111 this morning because the chest pains were persisting and I’ve nearly run out of Colchicine. They sent an ambulance and I went in late morning. Same as last time: normal ECG and bloods, sent home this time with a new prescription for Colchicine and steroids. But I can’t take steroids due to a bad reaction I had to them last time a few years ago. I’ve been sleeping a lot (slept all afternoon yesterday and 11 hours last night! )
I think I’m going to join the heart foundation group and see if any other person gets it each month. It’s weird, I seem to be getting a flare up on day 8/9/10 of my cycle each month!!
Hi maya, sorry your suffering a lot and had to be checked out at hospital again. I had to do this too before I was given colchicine!. Went in like you multiple times in case it was a heart attack!. It's awful and very stressful!. Glad you've got a new prescription for colchicine. What dose have they recommended you take?. Sorry you can't take steroids as they are very effective for this. Reason you get it so regularly at your monthly cycle is the added inflammation!. Hope you find others who get it similarly!. Makes us feel more normal. Hope your better soon. Xx
When I have an attack of it Maya I'm allowed to take it 3 X a day for a week to ten days to knock it on the head and then if ok to go back to the 2x a day I take all the time!. I expect they said you just have to be careful of an upset stomach at a higher dose!. I've been lucky with it and it's so transformed me!. Do hope your better soon. Take careXx
Just in case Maya, you may be ok on the two if it's a milder attack!. It's nice having something in reserve and to be able to ask your GP about it too. Hope your better today. Xx
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