I don't know what to do?: I have really bad chest... - LUPUS UK


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I don't know what to do?

zebedee01 profile image
13 Replies

I have really bad chest pain, well breathing pain, this is the forth day of it but its getting worse.

I have started to reduce my steroids just over a week ago, only on alternate days, I was so happy to be told I could reduce them and eventually come off them, now this!

I rang my rheumatologist yesterday and he said to increase the steroids again slightly, which I have done this morning.

However, the pain has got worse again since yesterday and its getting really uncomfortable, I didn't sleep very well lastnight, I certainly wouldn't be able to walk around or anything!

The thing is when I was first admitted to hospital last year I had a lot of fluid on my lung and round my heart. The fluid around my heart has taken longer to resolve and the fluid on my lung not as long. But I am worried now that I have fluid on my lung again.

I don't know what I am supposed to do. Do you just sit and wait for the steroids to sort you out, or should I go to hospital? I am still new to all this, I was diagnosed about march/april time so I'm not sure if you are supposed to get help for things like this or if its a case of well you know what it is so just sit it out until meds kick in.

13 Replies
erinzyxqx profile image

Hi zebedee01

First of all I would say don't panic! That's the worst thing to do I know when I feel I get extremely anxious and worried that it could be a flare so try to stay calm. I would probably stick with the pred increase for a few days but if it gets any worse phone your rheumie! I hope this helps :)

E x

Hi zebedee, high doses of steroids are what work for my lung involvement . Actually hope you are not reading this, because you have gone to a+e. Sometimes you need iv steroids so I wouldn't leave it. I'm no Dr but I know the harder your lungs have to work, your heart takes the strain too. Yes steroids are a ' wolf in sheeps clothing ",but they may be your only hope of some normality. I live in the now. With this disease you don't know what's round the corner. I'll worry about tomorrow when it comes. Take care.

Slowmo profile image

In my opinion any chest/breathing pain should be checked out, I suggest going to A&E or contacting your out of hours GP today, it's better to be safe than sorry, whilst I agree panicking doesn't help anxiety I don't believed this pain should be ignored, get it checked!

zebedee01 profile image

Thanks everyone x I haven't been to have it checked yet but I will do that tomorrow if I am in pain through the night x I am still in pain but it seems to have eased slightly.

misty14 profile image

Hi Zebedee01

If that pain continues to get worse despite upping your steroids then it should be checked out in A&E. I've had similar problems and it's what I've been told. I hope you feel better soon, it's such a frightening pain!. Hugs x

gazorpf profile image

One of the hardest things to figure out when you are relatively newly diagnosed is when to call the doctor and when to tough it out. You did the right thing by calling your rheumatologist.

Early on, I was guilty of waiting too long with either infections or chest pain. I don't do that anymore. Fluid around the heart is pericarditis. The correct advice is to go to the hospital. Of course, we are afraid of being admitted, afraid of getting bad news, and afraid of the hospital bills that follow. Call your rheumatologist again and explain exactly what has happened since you increased the steroids and share your concerns.

If you are going to make a mistake, it is better to make a mistake on the side of caution. You may just have pericarditis (which is serious in itself) or something else may be going on. It is better to know and get treatment, than to wonder and develop complications.

Hello zebeedee 01, please take yourself to A&E, and get an x-ray, breathing is important and with your past history, you must look after yourself, good luck

Shann07 profile image

Hiya, i have suffered percarditis in the past when first diagnosed 3 years ago and since i get chronic bouts of chest pain especially at night i cant lie on my left or right side which is identical to the pain of fluid, I'm panting to breathe with the pain. I have on occasions went to A&E where various exams showed nothing? Rheummy has turned me inside out (scans, xrays, echo) & tells me chronic chest pains is common after a serious attack of pericarditis or pleurisy Its like the lung tissues are damaged and inflamed causing sharp chest pains. I also have scarring on my lungs from the fluid. Im in the same boat as you every few days bad chest pain, although i have made a link between over doing things causing over tiredness & then chest pains come? Now i just sit it out but when should i say this is something serious because it feels like a heart attack? I usually take Naproxen which does ease it and rheummy tells me if pain relief works it usually isnt anything too sinister? I hope this helps and you get answers soon.

zebedee01 profile image

Thanks everyone for your advice xx

I went to A&E on sunday morning and just got home tonight!

Dose of steroids back up to 20mg, back on colchicine, and now on naproxen, aswell as other things I was already taking! grrrr, will this ever end?

Anyway, my ruematologist came to see me on the ward and he said I did the right thing by going in so now I know for next time x

Purpletop profile image
Purpletop in reply to zebedee01

So what was it? Pericarditis or pleurisy? Are you feeling better now?

zebedee01 profile image
zebedee01 in reply to Purpletop

pericarditis x I also have serositis with my lupus aswell so its a mixture of the two x

Purpletop profile image
Purpletop in reply to zebedee01

I had pericarditis too. It took me 5-6 months to get rid of the chest pain and breathlessness and I still have residual fluid. Take it easy in the next few weeks and sleep loads, it will help with the recovery. If you don't see an improvement after 6 weeks, ask for steroids, it will resolve quicker.

zebedee01 profile image
zebedee01 in reply to Purpletop

I'm already on steroids, have been since april! We were just starting to reduce them a tiny bit and then this! xx

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