Pleurisy

[joannebond360]

Hi everyone.

Does anyone have pleurisy as a symptom of lupus?

Just come out of hospital, I have had bouts of pleurisy but no infection. The reumatologist who saw me said that lupus is the likely cause of this. It's so painful and slog side it I have a very high pulse, which he said is due to the pain and inflammation, on beta blockers until the cardiology appointment. I have to have further tests on my heart and lungs in outpatients.

This is a new symptom for me and by far been the worse one yet!

Just wondering if anyone else has experienced this.

[misty14]

Hi Joanne

Sorry to read you have pleurisy and been in hospital. I have had it and it's very painful and I gather common with lupus!. I also had a fast heart rate and was put on a beta blocker but not high pulse like you. Mine went with high dose of steroids. How are they treating you for the inflammation?. It's good they want to check your heart and lungs with further tests but it does seem never ending doesn't it?. Keep us posted and hope you feel better soon. Lots of TLC. X

[joannebond360 in reply to misty14]

Hi Misty.

Thank you for your reply.

I have been having a high pulse recently even without the pleurisy but just higher when I have that.

I have thought about the steroids causing it too. I'm on 7.5 mg.

it does seem never ending. Going to call my lupus nurse tomorrow and find out what to do, probably want to up steroids but I don't want an even higher pulse! 🙈

It is so painful! 😢

Thank you so much.

Jo

[misty14 in reply to joannebond360]

Hi Joanne

My steroids were increased to 25mg and even 30 mg for the pleurisy and it did work!. Then the great reduction!. You've done well reducing to 7.5mg so it's cruel this has happened!. Good luck with lupus nurse and those tests. Keep us posted. X

[joannebond360 in reply to misty14]

The reduction 😩😩😩 I hate it! Got down to 4mg once and never been able to since 😢

Thank you so much. I will keep you posted.

Thank you for your help.

Xx

[misty14 in reply to joannebond360]

I know what you mean Joanne, I got to 6mg once and was really ill. Now stuck on 8 mg. need to get to below 7 mg but it won't be far!. Fingers crossed for you today. X

[EOLHPC]

Am v sorry you're having an extra rough time Joanne.

Yes: my pleurisy history ticked off one of the official lupus diagnostic criteria boxes when my head of Rheumatology was taking my medical history at our first appt in 2011.

Pleurisy was v painful. No picnic. This was in 1998 while the NHS still hadn't figured my infant onset lupus out. I think I was actually in a big lupus flare because I was poorly in lots of ways for many weeks, holed up at home asleep all the time. My gp diagnosed the pleurisy and gave me 2 weeks of high dose antibiotics for it. Which did the trick....but even after the pleurisy pain settle I was vvvvv tired and generally unwell for months

I've researched pleurisy enough to know some cases are treated with antibiotics. Now immunology says my early onset hypogammaglobulinaemia means I'll always need antibiotics when anything affects my lungs because my lack of immunoglobulins makes my respiratory system extra vulnerable. And my lupus meds makes the vulnerability to infection even greater. So immunology is treating me with daily oral antibiotics indefinitely. I suspect that if I get pleurisy again I'll be treated with both increased daily prednisolone & antibiotics

Please let us know how you get on

Take care

🍀😘🍀😘🍀😘 coco

[joannebond360 in reply to EOLHPC]

Hi barnclown.

Sorry to hear that you have had it too. It really is nasty! The pain is so horrible. 😢

The doctor in the hospital said you have to watch out for a fluid build up. Bloods clear so no infection and chest x ray clear but could hear it when he listened to my chest on the left hand side. The pain is worse on the left side but it hurts my upper back. So horrible.

Take care of yourself

Jo xx

[EOLHPC in reply to joannebond360]

Vvvvv much feeling for you....mine was worst on my right: hurt on breathing in & out, right through to my back....miserable,...it's good you have no infection! you'll be glad when this is over!!!!!

🍀😘🍀😘🌷🌷🌷🌷🌷🌷🌷🌷

[joannebond360 in reply to EOLHPC]

Thank you barnclown.

Yeah that's how mine feels, back kills. Can't wait for it to be over 😢

Jo xx

[Fennella02]

Hi. I get this approximately twice a year. It's desperately painful - on a par with childbirth as I'm unable to talk through the pain. My resp consultant tells me now to jack up my prednisolone very high at the outset. You have my heartfelt sympathy - it's a beast. I'm glad you're getting thoroughly checked out - I've had the raised heartbeat & D-dimer with it too so then the docs all panic about P.E's. Hope you're soon feeling better x

[joannebond360 in reply to Fennella02]

Hi Clare.

Thank you so much for your reply. It is real nasty isn't it and has scared the hell out of me! That's the same as me, I can't talk or breathe 😩

I will probably have to do the same, up steroids.

Great to hear from you about it. Reassured me, I'm not alone. Freaked me out 🙈

Jo xx

[soootired]

I get it regularly as well.

The first time I had a pleural effusion and the hospital put it down to pneumonia and gave me antibiotics.

This was the year I never got better, I kept going backwards and forwards to my gp and finally the dots where joined and we realised that my arthritis/multiple joint problems were connected. I was sent to see a rheumatologist and my diagnostic journey began.

I get pleurisy every few months BUT... ...since starting azathioprine 3 1/2 months ago I've not had it as much. Not for a couple of months so I'm hoping this is a sign the aza is working.

The only thing that works for me with pleurisy as others have said is steroids - 20-30mg.

I hope you feel better soon, try to rest as pleurisy tends to indicate a flare for me.

Take care xx

[joannebond360 in reply to soootired]

Thank you for your reply. I'm so sorry to hear that you also have experienced it. It's horrendous 😩

I'm so glad the Aza has helped you, really hope it keeps it away.

Do feel like I'm flaring as many other symptoms happening as well.

I'm back to addenbrookes tomorrow so will see what they say 😢

Jo

[Chanpreet_Walia LUPUS UK]

Hi Joannebond360,

According to The Lupus Encyclopaedia, “Pleuritis (pleurisy) is fairly common in people who have SLE, occurring in 40% to 50% of them at some point in life”. The NHS Choices’ website provides a detailed overview of pleurisy and the types of treatment available for it which you can read here: nhs.uk/conditions/pleurisy/... .

Please keep us updated, wishing you all the best.

[script420]

Its very common and in some case,s such as mine may require surgery.

[Hidden]

I have pleurisy during flare ups. Can’t take a deep breath. Sucks. It just sucks