Lupus & pericarditis

[QueenV]

Hi I'm new to this group & I've found it reassuring to read people with the same symtoms as myself. Is there anyone who suffers from lupus & as a result has had pericarditis? I've been on high dose steroids which hasn't helped & will be having an echo soon. If anyone has had these symptoms I'd live to hear from you!

[misty14]

Hi QueenV

Welcome to the forum, glad you've found it helpful.

So sorry you have Pericarditis as I know what a painful and worrying condition it can be. I'm interested that you say steroids haven't helped because I've found upping my dose has helped me along with strong painkillers. An NSAID I'm on Celebrex has also helped better than some of the others. What steroid dose are you on?. I 'm reducing mine from 20 mg daily after a bout and have reached 15mg, need to get to 10 mg!.

Good luck with the echo test, don't be surprised if it doesn't show anything. I've had quite a few all coming back negative which is good but has made diagnosis difficult. Keep us posted, your not alone with this problem.X

[QueenV in reply to misty14]

Hi my dose of steriods went from 8 to 12 then slowly reduced. I'm on naproxen now but I'm still suffering with the symptoms of pericarditis. I'm really hoping I can get some relief soon as I feel I can't keep suffering like this. I hope you're in good health. Thanks.

[Cariow1]

Hi my 17 year old Son has SLE and his flares always result in pericarditis . He hasn't unfortunately been able to get off steroids for any length of time before another bout occurs . They have tried azathioprine and Mycophenolate but with no luck . He has just been referred to St Thomas's in London so hoping they can come up with a treatment . Ironically I have had two bouts of pericarditis in the last six months and several similar lupus symptoms so now seeing a Rheumy . I hope you get some effective treatment to manage yours as I know the impact of being up and down on high doses of steroids is not good .

[Purpletop]

Yes, I had pericarditis. The problem with taking steroids for it is that pericarditis becomes recurrent. I was diagnosed in the A&E, then sent to gp who gave me ibuprofen for 6 weeks until I researched it myself and asked for colchicine, a drug usually given for gout but that has great impact on pericarditis. I took that for about 2 weeks, then my rheumatologist put me on steroids for a week, which resolved it in the main.

The effects of pericarditis tend to linger a lot longer than the visible signs of fluid around the heart, so even if the echo shows no fluid, you could still feel unable to breathe properly and have chest pains for up to a year afterwards.

Echo is fine to see a lot of fluid but a chest MRI is the best way to see even few millimetres of fluid. My chest MRI showed fluid even 2 years after echo showed no fluid.

The thing to remember is that the fluid may never go away (it may never be reabsorbed into the body) but healthy people may have that too, so cardiologists do not worry as long as your heart beats fine and you have no symptoms.

All the best in sorting this out.

[QueenV in reply to Purpletop]

Hi many thank for your response I found it extremely useful. Firstly sorry you've had to experience this it must have been awful for you. I will research the drug you mentioned & mention it at my next appointment. Thank you for your advice & I hope you are in good health.

[Gillian9]

Hi, I had pericarditis earlier this year, fifth time, I was in hospital for 2 weeks and along with all my SLE drugs they put me on a high dose of Ibrufen for 2 weeks, increased my steroids and then Colchisine for 6 months. An earlier reply has mentioned this drug, it has only just been started being used for Pericarditis.

Good luck

[QueenV in reply to Gillian9]

Hi Gillian thank you for writing to me. I'm sorry you've had such a rough time! My worry is I've been on extremely high dose steriods for 2 months & this hasn't worked. I'm unsure what treatment they can offer. You take care.

[Cann]

I was diagnosed with myocarditis several years ago. I was told to have time off work and rest. I did and it cleared up.

[mcjm]

I too have Lupus and several bouts of pericarditis. Before being put on Methotextrate which has calmed most of my symptoms I would take Arcoxia (90mgs). I also have ruptured sinus of valsalva aneurysm. Whenever I have had bouts of chest pain I would be hospitalised and given bed rest, this too helps to alleviate the pain.