Hello, I was just wondering if anyone has had pericarditis as a result of a flare? And how common is it? I had a severe bout when my lupus flare progressed initially (12 years ago) and had steroids to counteract it. I have noticed recently (last 12/18m) that whenever I now have a flare it just seems to go straight to my chest. Feels like someone is stood on it and my chest is constricted. OK when still but a severe pressure almost stabbing pain on movement. Horrendous thing to experience and very scary/worrying when it happens. (I’m in my mid thirties and worry if eventually it may weaken my heart and/or get worse). Any help would be appreciated and/or comments if you’ve had anything similar to know how it affected you.
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87654321H
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Hi87654321H, im sorry to read you have bouts of pericarditis like i do. It gets better and then suddenly flares doesnt it and as you rightly say its frightening when it does happen!. Its so painful too!.
Ive had it on and off for years now and had many trips to A&E to get it checked out as its so like a heart attack!. What really improved my symptoms was colchicine, a strong anti-inflammatory drug for gout but they've discovered it treats pericarditis so well. Rheumy's use it as a diagnosis tool because if it doesnt help the symptoms then its not pericarditis its that good for it.
Im interested that yours is treated by steroids as mine is too when really bad. Do you do a steroid taper?. High to start and then gradually come down. What medication are you on for the lupus. Ive found methotrexate is helping my chest symptoms better too.
Theres also an NSAID, a cox 2 one that is better for tummy's called celebrex that is also good for pericarditis too. It depends how strong your symptoms are !.
Is your rheumy treating your pericarditis or are you being seen by cardiology?. You can be treated by both or just the Rheumy. My Rheumy said to me if i get repeated bouts they will do an echocardiogram to check things like the heart muscle. When i first developed it i had a lot of heart tests to rule out the known nasties and luckily i was all clear.
You might like to ask your rheumy about an echo. I hope this is helpful to you and please ask me anything else if you'd like to. Keep safe and as well as possible. Xx
Thank you so much for responding there’s a lot of helpful information in your response that I really appreciate. I’m on 400mg hydroxychloroquine and nothing else at present. Historically when I first had pericarditis 12 years ago I was put on 20mg of prednisolone and eventually managed to taper off to then come off them completely 4 years later(I’m now vitamin D deficiency as a result).
Last year after a year or so after the birth of my daughter I dosed down my 400mg hydrochloriquinne to 200mg (as recommended because of retinopathy risk) which I think brought the pericarditis back.
As my lupus flares come and go with the wind I do dumb down the pain and think if I rest to counteract it it’ll disappear, i rarely seek medical advice. Unfortunately unlike a swollen finger, knee, ankle, arm etc I don’t feel as though the fluid/inflammation disappears fully from my pericardium. As soon as I have a flare it’s as if I can feel a tap has been turned on fluid increasingly fills the sack and applies more and more pressure.
My recent issue is that it has progressed so badly that when my husband worked away I worried with my 2 year old sleeping in the room next door that it may kill me. The next day I took myself to A&E only for the ECG, blood test and echo to be done and a very dismissive cardiologist find nothing(additional bloods came back as an active lupus and raised inflammation). Originally 12 years ago I had the same experience and it was only from a MRI did they find fluid around my heart.
Thank you for your recommendation for Colchicine, I will definitely mention this to my GP/rheumatologist when I next speak to them.
My issue at the moment and why I’m slightly hesitant on taking any more/different medication is that I’m looking to have another baby and because it took me so long to come off the steroids last time I was just hopeful there was a temporary, other way just to get me through another pregnancy.
From my last hospital visit I felt very deflated and isolated.
I’m really trying to establish if this is now something I will have to put up with for the rest of my life and is it something that could potentially kill me(as morbid as that sounds)? I want to know if it’s progressive and if it’ll ever go away. All of which I suppose is impossible to answer especially if I can’t even get a cardiologist to see particularly that it has returned.
I also need to point out that a general doctor at the hospital did see a thin layer of fluid on an echo that he personally did hence why the cardiologist was brought to investigate. It was the cardiologist that disagreed from a brief (what I thought) less involved scan using a thin pen like contraption attached to what looked like an iPad that he did. Incidentally it’s put me off going back to A&E irrespective of how painful my chest feels.
I have read online that treating pericarditis with corticosteroids can cause the reoccurrence of pericarditis in some 30-50% of cases. I don’t want to forever be dipping in and out of steroid use always wondering if it’ll ever leave me.
Sorry for the long reply, it’s great to be able to speak to someone who can remotely relate and sympathise with what I’m going through.
I’m currently sat up in bed as when I rolled over the pain woke me up and sitting up seems to be the only way alleviate some symptoms.
It’s funny what we put up with and half accept when we have these immune conditions we almost normalise them(rightly or wrongly).
Again, thank you for your time and I hope you’re keeping well xx
Hi 87654321HI am so pleased my reply has been helpful and great to see you've had other good replies too. I can learn about pericarditis too as i don't know too much about it. Didnt know that about the steroids!.
I can really understand your difficulties and its a difdicult condition really because cardiologists dismiss it and rheumy's look after it and easy for us to fall between the two.
I agree also that because lupus waxes and wanes we have to make decisions about when to seek help but try to sort it first ourselves as rest can just be the answer.!. That is hard too but we learn from experience like you are .
I do think your condition has progressed from just managing on hcq because of the pericarditis and like me symptoms can be more chronic. Interesting from your other replies that it is regarded as organ involvement. And therein lies the dilemma over pregnancy. This all needs to be discussed with your Rheumy so if your not due a review id chase it up. Colchicine has saved me too cutting down the big attacks but im not sure if you can take it in pregnancy!. They will also be able to answer your questions too. My rheumy deals with my chest and instead of A&E if i have any problems i go straight to them now. I know when i should do A&E if the pain worsens horribly just in case.!. Has your rheumy dept got nurses you can contact. Its a shame you've obviously been doing so well healthwise till this pericarditis came along!. You are going to have to more medical contact for it but as i say it does wax and wane of itself.
Do take care, specially hard with a two year old and keep safe and keep us posted. Xx
Everywhere is different Misty. Cardiology do look after patients with pericarditis. I wouldn't agree that they dismiss it?
Sometimes in extreme cases the pericardium needs removing. I have cardiology input and have a yearly echo. When I have been admitted with pericarditis it has always been under cardiology. The difference with us is that the cause is the SLE. Pericarditis is almost a symptom of SLE despite it being a medical condition in its own right.
It often presents in young athletic males after a virus.
In order for our pericarditis or serositis to to be managed and sorted out our Rheumatologist needs to get our SLE under control, hence joint care is best.
A short sharp burst of pred is good for an acute phase and long term colchicine to hold it at bay as you know.
Thanks ht for your really helpful reply. I didnt mean to be that sweeping about cardiology and had missed off the word 'can'.
Im glad you get yearly echos and input from them. Im glad care does vary because i don't get any input from them at all and my pericarditis is looked after by my Rheumy dept. Im probably a much milder case but don't even have yearly echos. Im just like you in that colchicine is keeping my chest symptoms controlled very well and it really changed my life being prescribed it!.
I can also say ht the lower your able to reduce the steroids your big tummy will start to go down. Im finding ive got a smaller waist and this is without being able to exercise much still!. 😀
I hope you have a good week this week and keep safe. Xx🌷❤🌷
Wow ht, just shows how much fluid we can store!. You must have felt so much lighter, far less bloated. Side effects can give us just as many problems as the illnesses!. Its hard knowing which it is!.
Good luck with your pain infusion. When is it?. I know you go thru so much with those side effects before the benefits kick in.
Funnily enough ive just had my leg nerve injections today and get lots of backache first before help after a week.
Some people have parties to go to we get procedures or steroid reductions!. 😪
You've done brilliantly to get the sterouds down to 8.5mg!. Lots of luck when you reduce again. Sending you lots of love too ht and im thinking of you. Keep safe. Big hug. Xx🌷❤🌷❤
I always find ht that time goes extra slow when important appts are coming up and badly needed!. Im really sorry you have erthymelagia too!. You have so much to cope with and juggle ht. Its bound to get us down and trigger depression. Its also length of time of having to get by and just cope which can be too much too. You've had a terrible year with those awful hospital admissions. Don't forget too they're linking inflammation to depression now as a cause of it!. Ive been feeling really down too which is different for me. I think also its the strain of covid lasting well into this 2nd year. I didnt think it would did you?. Its a big combo of stuff for us i think causing this!.
I really related to your last flare post and have always said ht that your ex didnt know what he was missing in a lovely, positive lass like you are against awful odds!. Dreadful thing he did to you which is always a constant horrible reminder. I too have resentment feelings towards my cousins who escaped scott free and like you say, i too got the hand of all the appt's, drugs, ill health and no life!. These feelings will only affect us and so need to be dealt with somehow which is where specialist counsellors might come in!. I did sign up to talkwalks from the nhs who have a special section for people coping with long term illness!. I got cold feet and put it on hold before first appt but it feels good its a possibility!. I just wonder if you writing a letter to him , getting how you feel down on paper might help but obviously not to send it. Is he still in your local area?. That's doubly hard too.
I feel like a bird in a gilded cage who is trying to fly away and each time of trying ,something new comes along to keep her in that cage!. Ive still got problems with this foot and luckily have a podiatry follow up on 20/8!.
Im sorry ht ive written a lot but your post really resonated with me and its made me think a lot. I hope it helps that your not alone. Keep hanging on for your prized appt and know i'm thinking of you. Keep safe. Xx🌷❤🌷
That’s a lovely comment Misty, it’s support that helps us through these difficult times and from all of these comments I can see it’s in abundance here. To know you’re not alone and someone is wishing you well is worth its weight in gold. I wish you both well through the highs and the lows and hope the highs outweigh the lows in the upcoming years! xx
Thank you so much 87654321H, for your lovely comments. It's great to hear how the forum is helping you as I treasure the lovely people on here too. It's very special how we can support one another. Keep safe. Xx
Misty, I had it niggling but I developed pericarditis again last night. I've had to out my pred up 😭😭😭😭 as I was hardly able to breathe. Apparently it's a known side effect of the Pfizer jab.
O don't care right now because it hurts to much but when I start to feel better I'm going to be so frustrated xx
Oh ht I'm so sorry about the pericarditis again. I had it too after the first Pfizer jab. The 2nd jab I dreaded having but luckily I t was milder and I was ok. This pattern has been for quite a lot of us. I got better with the added pred and did get back down to my original pred dose too..
Do hope you're feeling better. Frustration is a waste of energy that you need to be well. Thinking of you ht. Big hugXx🌷❤️🌷👌🏻❤️🌷❤️👌🏻❤️🌷❤️👌🏻
Thank you Misty, apologies for the late reply. I’ve had a crazy few days. You are right I need to consult my rheumatologist especially now I know how many people they must treat with this reoccurring issue.
Since we last spoke I decided to take a weekly dose of 15mg of steroids to see if I can kick it into touch. Apparently Colchicine sadly isn’t recommended in pregnancy but I will discuss this with my rheumatologist on a long term planning perspective for when that’s not an issue. Again, thank you for recommending it it may be the answer I’m looking for to deal with this in the long term.
You’ve given me hope which is invaluable- thank you xx
Hi again 87654321H, I'm so pleased I've helped you to navigate your way thru this. You've got some difficult decisions to make. I looked up colchicine leaflet for you and saw about pregnancy. It would be a good long term option as it's helped both ht and I in that way!. Drug help is so limited in pregnancy!.
I should think the extra steroids will sort it. That dose does for me. Can you just do this without your Rheumy or GP knowing?. I always tell mine or seek Rheumy input first via the nurses. I hope you've got them at your hospital.
I'm very relieved your going to get Rheumy advice re pericarditis and pregnancy because you do need their help for both.
If you'd like do let us know how you get on and I hope the steroids work their magic soon .
There's a lovely quote, 'it's better to travel with hope than to arrive'. Hope has kept me going over the years so I'm glad I've restored yours. Keep safe. Xx
Do you have a source for that statement about steroids causing reoccurance? I'd be interested to read it? And is it in the context of SLE Pericarditis or non SLE pericarditis?Thank you.
Hi, I’ll have to have another dig around. I think it was from a foreign medical study but yes it was in relation to SLE so if it’s a reoccurring issue and can go hand in hand with a bad flare with some people then the high percentages make sense. I’ll have another search and send you the link as and when I hopefully find it. xx
I had the same thing as you twice; pericarditis and pleurisy at 30 ( first diagnosis of Lupus) and 35 in a severe flare up. Now at 46, I just have the scarring on the lungs and a mandatory ECG, for any general surgery.
I was advised by my consultant to strictly avoid heart rasing exercise, so aerobics, HITT etc...is out of the question, just cycling and swimming is best.
Overall, I don't have day to day pain (stitch sensation) but I am mindful that should I have another flare up, that's where it will attack. My advise is just take each day as it goes. Keep your doctor/consultant in the loop about your concerns, they should be monitoring you more closely if you have yearly flares.
Fortunately, I don't have frequent flares, just big ones over a period of years.
Thank you very much. Your comment regarding exercise and exertion is something that I have been wondering about. Especially with a very active toddler!
I will bear this in mind and as suggested speak to my consultant. I have just started some prednisolone hoping it will help. I’m glad your flares aren’t frequent (as you say) and hope that your ‘big ones’ are manageable and go as swiftly as they come!
All the best to you too and thank you too and thank you for taking the time to comment.
I saw your post last night but was to tired to reply, I knew Misty would though. (Hi Misty 👋).
I have SLE amongst other AI conditions and can't emphasise enough how important it is to nip pericarditis in the bud before it escalates and causes scarring.
I have reoccurring pericarditis and am on long-term pred, currently 8.5mg. My Pericarditis was dismissed for months until I eventually collapsed. An ECG can show changes but it isn't a reliable diagnostic tool for pericarditis, neither is an echo although it is more useful than an ECG. The best diagnostic test is a cardiac MRI. Mine lit up like a Christmas tree.
It's natural to have a small amount of fluid between myocardium, endocardium and pericardium as it allows the smooth muscle to glide over themselves. When you talk about alot of fluid gathering there that is something more serious like a pericardial effusion. They can resolve but generally need medication and in extreme cases need to be drained.
I too am on colchicine. I take it 3 times a day with food and I increase it to 4 times a day if flaring. Colchicine saved me. My Pericarditis was so bad that I was collapsing with it and it was radiating into my jaw, making it burn so much I wanted to cut my jaw out. Extreme eh?
It's interesting that sitting forward helps to relieve your symptoms because that is a typical sign of pericarditis, worse when laying down, relieved when sitting forward. But it's exhausting isn't it?
A short sharp burst of steroids and anti-inflammatory medications may hey the pericarditis under control very quickly. It could prevent scarring and permanent damage to a vital organ. If your bloods shows that you had active SLE and you were presenting with Pericarditis then who is managing your SLE because you are getting organ involvement.
If you are a mother and are seeking to have another child I would get a proper Medical plan for this. I was let down with my initial pericarditis treatment and am now on permanent medications for it. Don't risk your health. Pericardiums are delicate things.
Hello ht, thats a brill pericarditis reply as its so helpful. Well done too your steroids are 8.5mg. A fantastic achievement as i know how hard it is and specially so for you. Keep safe. Xx❤🌷❤
Wow well that’s a definite motivational comment for me to get it sorted before it does progress into something more sinister. I’m sorry you’ve experienced what you have but am so glad that, as you say, colchicine improved things for you somewhat.It does sound extreme and absolutely exhausting what you’ve gone through and continue to but I can quite easily see how it can accelerate quickly.
I decided on Sunday to take a weekly course of steroids (15mg) to as you say try and nip this current flare in the bud. Slightly concerned that even after 2 days of pred I’m again sat up in bed with the same pain unable to sleep. I know it’s not a miracle drug but I did expect to stop the night time wake up. Maybe it’s progressed as I haven’t counteracted it with medication. I’ll see how I am by the end of the week but I will contact my rheumatology department tomorrow to inform them of what I’m doing and what I’m experiencing.
I’m sorry you’re on long term pred. I absolutely hated the stuff when I was on it long term (well for the 4 years that I did).
I hope things improve for you soon. You are definitely due some improvements with all you’ve had to contend with.
Hi yes I have this often I have SLE just had pleurisy with it as well have to sleep sat up because too painful to lie down got steroid injection last week thank god it’s helping hope your Better soon xx
Thank you, and you! A comfort that I’m not alone but wish you weren’t experiencing the same. I’m glad the injection is helping, I hope it alleviates your symptoms! xx
SLE flares for me means severe pericarditis and pleurisy as well. It is one of my most dreaded symptoms. I get them for months at a time (sometimes lasting 6 months if I don't take medication). It is incredibly painful upon any movement, as you mentioned, and especially when lying down. Mine doesn't help when I lean forward, only helps when I sit upright and don't move, but I gotta move during the day. And breathing hurts too. My rheumatologist gives me prednisone (20mg per day) to control it, but like you said, I do not want to keep taking prednisone. I haven't tried Colchicine before, but seems like a good option.
Colchicine is so good. It keeps my attacks at bay. I take it three times a day and increase to 4 times a day if I flare.
Colchicine can cause some Gastrointestinal side effects in some people. Basically it can give you diarrhoea and some people cannot take it for this reason. However, my understanding from my cardiologist and hospital pharmacist is this.....it's a bit like marmite. Your body either lives it or hates it and you find out pretty quickly.
Fortunately for me I tolerate it very well and have no adverse affects. It can be a nephrotoxic drug so as long as you have your renal function checked about twice a year then it should be fine.
The benefit of being without pericarditis far outweighs the risk of cholchicine to me.
Sorry for the marmite analogy. I blame my consultant 😂
So great it works for you. I'll have to discuss it with my rheum next time. Do you need to take other meds to keep lupus at bay, or just colchicine for pericarditis?
Yes I take a PPI, pred, HCQ, colchicine, I also have chronic pain, so pregablin and MST, I also have POTs so chuck in some beta-blockers and fludrocortisone. An immune deficiency so add in all the meds for that. And that's just for breakfast
But basically I take HCQ, pred, colchicine to manage my SLE and pericarditis, but SLE was diagnosed so late that I had other ANS, Immune problems and organ involved as well. All caused by SLE though so I know how important it is to nip it in the bud.
I have been tried on 3 different DMARDS but they didn't suit me, although when covid cases are lower I'd like to give Azathioprine another go at a low dose..
How about you?? How do you manage this inflammatory condition?
Gosh I’m sorry everything has progressed to that level. Very annoying that you were fobbed off initially. The thought that there could have been a preventative measure would make me very angry. However that wouldn’t help nor heal the situation. You cope very well you’re clearly a very strong lady! xx
Oof! Thankful you have a good sense of humor about it - pharmacy haha. I hope you are managing. I have been on and off prednisone at varying doses, and also was on Imuran for several years. Plaquenil gave me ringing in the ears unfortunately, but eventually I may want to try it again, because it seems to be the least damaging of the bunch (being not an immunosuppressant). Currently on prednisone again and my rheum wants to add Cellcept. I recently also started Traditional Chinese Medicine, which seems to help my hemoglobin (I was severely anemic) but not lupus so far...apparently it takes a long time to work. So I'll give it some more time. I also tried Dr. Brooke Goldner's nutritional plan for autoimmune disease (I think someone else on this thread also mentioned her work). I resonate with what you said about nipping it in the bud, because lupus can be scary, and at the same time, I really detest taking prednisone because of all the long term + short term side effects that come with it. My rheum wants to increase my prednisone dosage and add Cellcept because my blood markers are not improving as fast as he hopes, although I don't have noticeable symptoms right now.
Yes I’m glad you’ve found colchicine from the other ladies also it seems like a light in a very dark tunnel. I hope it helps you after your enquiries as I hope it’ll help me if this dose of steroids (that I’ve recently decided to take) doesn’t.I’m sorry you’ve had pleurisy also. I literally know nothing about that and didn’t know you could get both at the same time! So unfortunate for you to have a double whammy as it were, both in the same vicinity.
I hope things improve for you.
Your comment made me laugh “but gotta move during the day”, you’re quite right and yes that’s when the trouble starts!
Grateful you started this thread because pericarditis is such an awful and scary symptom. I always feel better when I know there are others who understand. It is so ridiculously painful, and yes, haha can't sit upright not moving all day long. Hope the prednisone works for you and you can taper. I am still on prednisone because my rheum wants to see improvement in the blood markers (although symptoms have subsided for a few weeks now).
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