advice

[Numptybrain]

Hi everyone, just a little bit of advice needed. I’m suspected lupus sle already having Serositis affecting my lungs and heart. I’m on 5 mg prednisone and 2000mg mmf but my ribs , back and left wrist is extremely painful, any advice out there would be greatly accepted.

Take care

Wendy xx

[RosieA]

Hi Wendy,

I have Lupus, recently diagnosed after a few years of being having UCTD. The change in diagnosis was because of pericarditis / pleurisy which I believe is Serositis and is part of the diagnositic criteria for Lupus. I have suffered horrific rib pain, as in bringing me to tears for several years and everyone thought it was costochondritis etc- it was only after an echocardiogram that pericarditis was confirmed. I have no idea (yet) if there is any damage done.

When I am tired or 'flaring' a little my tell tale is how much my ribs hurt. I get diffuse pain across the upper back /chest when breathing deeply. Positional change can relieve pain and my heat pad is absolutely essential. I find leaning on the side with the most pleuritic pain the best- the exception being pericardial pain- then sitting forward helps. I still can't sleep on my left side as my heart starts to pound.

I do get lower back pain but put this down a little to ageing (64) rightly or wrongly. I get R hand joint pain- again varies with disease activity.

I don't know if this is of any help but certainly you are not alone. It is a dreadful pain I know- with you all day at its worst.

At the moment I can go for walk but have to stop at intervals when I get sharp pain in R side of chest. I'm on Hydroxychloroquine and Azathioprine. Hopes this helps a little. xx

[Numptybrain in reply to RosieA]

You are exactly like me I had bilateral pleural and pericardial effusion’s for over a year finally diagnosed as Serositis but unfortunately had a rheumatologist who didn’t agree with respiratory consultants and top radiologist as ANA negative but inflammation showed on ct scans. Now awaiting second opinion by rheumatologist. I have exact same pain except left wrist, my back has got worse and I’ve had fusion surgery 2 years ago to repair my lower spine but this is higher.

Take care

Wendy xx

[RosieA in reply to Numptybrain]

I do so hope you get some answers from your next Rheumy appointment. Do you have a date? x

[Numptybrain in reply to RosieA]

29/11 so quite soon, it’s taken years for diagnosis as I’ve had molar rash 3 times, I’ve got sensorial hearing loss and also had a brain hemorraghe . My issues started in my late 20’s with mobility issues and since all this including gastro and liver issues nowstage2 CKD and terrible blurred vision, it’s just one thing after another.