Please can someone help?
My rheumatologist is insisting that my recent bout of pleurisy has nothing to do with Lupus likewise my recent pneumonia episodes.
My lungs are getting worse and it is being ignored.
Online info states pleurisy is common with Lupus patients with lung problems.
Does anyone else have this?
I have the swollen chest a lot. It feels one a heart attack/heavy chest/ heart burning ! When I had a virus , I did have plurousy with that. Why wouldn’t he think it’s from your Lupus? Isn’t Lupus when our body attack’s itself? Doh! It’s all one in the same! Who cares why? Go see another doctor for second opinion!
I changed my rheumatologist years ago and she spitefully tried to get me kicked out of my local hospital. I was given someone who reports to her, each visit he says it is not lupus related! He said the same of my pneumonia and now refuses to believe my kidney infections are lupus related.
Crikey! Ask to see a different rheumatologist!
Pleurisy is listed on the score sheet for systemic monitoring of SLE (sledai-2k.com/sledai2k.pdf) - the only way a to assess SLE according to the the BSR Guideline (academic.oup.com/rheumatolo... - the only NICE-accredited lupus management manual for doctors.
I'm taking both documents to my SLE review on Friday as there is only one Rheumatologist at my hospital...here's some quotes from him:
"Gut problems?...that's not lupus" LAUGH
"You HAVE to take hydroxychloroquine" LAUGH (I'm allergic)
"Any new symptoms" LAUGH ...
Stay chipper and remember your patient's rights xxx
Unfortunately this is what we go through m😢.This is more common then people really have any idea! It happens not only with Family and close friends , but Doctors and so many other medical professionals in high positions! Especially with all this news and media now with the opioid crisis ...I have to say we are just going to have to really ban together more than ever and be advocates for ourselves More than ever before!!!! Stay strong my friend! We are all here for you! We live this and we are stronger together! We believe you and we live it with you! One thing we do have hope for is we do have the ability to believe In faith and the Love and support of others like those of us who we can go to for support for to be empowered for education and resources !
And never forget....Mad respect to you from us here for what you go though here! Tell it to us! we go through it in all ways as well! We will listen to one another’s stories! Xxoo 🙏💔😇
I was hospitalised with pleurisy after feeling tired and unwell for months, this was when my lupus was diagnosed!
Hi
Since January 2017 I've had pleurisy 3 times and pneumonia once. Thankfully my rheumatologist took it seriously and sent me for a CT scan which confirmed that I had Interstitial lung disease and that it was lupus related. I now go to the respiratory clinic as well as rheumatology.
I would definitely be seeking a second opinion before there's anymore damage to your lungs.
Hi lona467,
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/...
We published a factsheet on 'LUPUS: The Heart and Lungs' which you can read here: lupusuk.org.uk/wp-content/u...
I am seeing my GP tomorrow and will mention it to her. She is on the old rheumatologist side, even threatened to stop all my treatment if I changed my GP practice, she knew they would be found out for their shoddy treatment of me. And I was on a critical list then!
Hope your appointment goes well, yes do mention this fact, please keep us updated. As a patient, you have every right to change doctors if you feel unsatisfied with your current doctor's performance. Best wishes.
I agree with all -- be proactive with your doctor and/or get a 2nd opinion ! I was told "pleurisy" in the early years before my APS and Lupus diagnosis, and later I had several hospitalizations of "pneumonia" over 3-4 years which turned out actually to be Lupus attacking lungs. When breathing got so bad and a bronchoscopy with biopsy was made, I was labeled with "Interstitial Lung Disease" but I already had some scar tissue damage. I am regularly monitored by both my Rheumatologist and Pulmonologist now. Since rituximab infusions (just had 5th and 6th one; 2 every 6 months) I have had no lung attacks. As long as Lupus doesn't flare big time on my lungs, I have a good prognosis of stopping any further lung scarring and not needing an oxygen tank in the future. In some dark days I was even looking up lung transplants-- at that point you realize that Lupus and "ILD" isn't to be taken lightly.
hello , i have at least 6 chest infections a year , whenever i ask if its related to lupus i am ignored . i seem to be permanently ill and am sick of not getting any answers . your not alone sadly , wishing you well . xxx
In my experiences, Lupus along with the immune suppressants are definitely the cause of these illnesses, pleurisy ,pneumonia, organ involvement. It makes sense, don't let them tell you otherwise or dismiss you.
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