Pain relief for pleurisy in Lupus

[janelarambla]

I have recently been diagnosed with Lupus although I've had it for many years. The pain in my lungs is unbearable and keeps me awake at night. I've been given slow release Ibuprofen but makes no difference. What is the treatment for long-term, probably permanent pleurisy? Well, perhaps I should say, what helps?

[Feester12]

Hi there, I had pleurisy and it’s how I got diagnosed with MCTD. I got given high dose steroids and immune suppressants. The steroids were tapered off but I was taking low dose for a year and still take azathioprine daily since 2016 and am pleased to say I’ve not had pleurisy since but I did have it for months and in both my lungs and it led to a build up of fluid that I had to have drained. The pain continued for about a year but nowhere near as bad once the steroids kicked in and did eventually go. I would ask for steroids and immune suppressants as I don’t think anything else will work as you need it to go away not just mask the pain with ibuprofen. Like you, I couldn’t sleep and had to be sitting up, so so painful. Good luck and hope you feel better soon. x

[Barnclown in reply to Feester12]

Feester: well said! Pleurisy was also key to my SLE diagnosis.

We only managed to clear it by resorting to high dose long term antibiotics…probably cause bacterial-pneumonia was the underlying cause (due to my primary immunodeficiency disease). treatment for pleurisy depends on whatever is combining to cause it

nhsinform.scot/illnesses-an...

Janelarambla: the pain really is horrific…due to my adverse reactions to analgesics of most types, I had to manage with max paracetamol, but my husband needed morphine for his (a post-op pleurisy - following major bowel surgery). Hope you get this sorted asap

🍀❤️🍀❤️ Coco

[Guatmom]

A large pleural effusion is what led to my lupus diagnosis. The pain was awful. It had to be drained three times, removing a liter of fluid each time. My pulmonologist wouldn’t prescribe steroids until he was certain I didn’t have tuberculosis. Once the TB blood test came back negative, I started on steroids and plaquenil. Thankfully the lung issues have not returned.

[Amakura]

Same here but eventually, after a hard push, I was also diagnosed with Lupus.

Pleurisy is very painful. One day, I became so desperate that I contacted the British Lung Foundation helpline because I was really struggling. Maybe give them a call, perhaps? Apparently, it takes a while for the pain to subside (I was also taking antibiotics). Reason being, and I hope I'm not misquoting them but lungs are constantly moving even when we are asleep. They never rest. Hence, the healing process takes a while. They give excellent advice, so give them a call.

Unfortunately, I can't take ibuprofen due to being allergic to NsAids, so it was horrific. Although, since being forever on steroids, it hasn't reappeared again (fingers crossed as I'm due to be tapered off them very soon due to my adrenals).

I was also told to take vitamin D but the spray, which also helped. As I was prone to infections and since starting it (in 2018), I've only had a couple in comparison to literally one every 2 to 3 months.

Be very patient, plenty of rest if you can and remember, the healing process is a journey. No quick fix, I'm afraid but definitely give BLF a call

Good luck

[tdbsnoball]

Naproxen? R u on hydroxychloroquine?