Hi, I have had bilateral pleural effusion since December 22 . Consultants are all saying lupus sle but my ANA was negative

[Numptybrain]

Hi everyone

Newbie, I’ve been battling for a diagnosis since 2014 when a butterfly rash appeared on my face, my then doctor sent me to a rheumatologist and I had raised bloods he at first seemed interested but next visit my bloods were normal so he put down my joint pain as mechanical. It’s gone on from there to now struggling to breathe with bilateral pleural effusion since December 22 that respiratory consultants believe is caused by .

connective tissue disease as it’s inflammatory.

I’m now 61 this all started at 32 so you can imagine I’m worn out , my only hobbies are watching a good drama or true films.

[Spanielmadlady]

Hi. I've struggled with my lungs since a chest infection led to bi lateral pleurisy with effusion in 2014. I get bouts of pleuritic chest pain and pneumonia having had several hospital admission as a result.Prednisolone has been the only drug to help and as a result I've been steroid dependent since 2014.I take 2 prophylactic antibiotics 3x a week as well as carbocystiene. I've done pulmonary rehab, respiratory physio ,had cameras up my nose (no nasal drip) and into my lungs ( never again) ive been to respiratory, chest ,asthma clinics had inhalers and nebs at home.had high resolution ct scans and lung function tests .the latest respiratory Dr I saw in dec said he thinks my Lupus affects my muscles causing dysfunctional breathing and is going to tell my rheumy he needs to control my Lupus better. Stress,weather extremes etc are huge contributing factors and my breathing deteriorates very quickly.i had 3 stable years when I went onto mmf in but it's been abit rocky since Nov 22.

My ANA and DS-DNA were positive in 2016 but have been negative since.

I have 2 dogs (1 an energetic Pup) but still manage to get out and about down the beach most days. Pacing is essential as is sleep (often throught the day ) breathing exercises help once you get the hang of them ....in through the nose out through pursed lips using your diaphragm. I often have to do some chores like food prep sitting down. My son hoovers as that is a killer for me.

If I remember correctly I was given fursomide when I had pleural effusion.

Im very fortunate to have a good rheumy and fab gp who allow me to adjust my steroids accordingly.Im currently trying to balance keeping my steroids low without my breathing deteriorating as i need 1 op if not 2 after having several falls last year SML xx

[Numptybrain in reply to Spanielmadlady]

Do you have any other symptoms for lupus I have bilateral sensoriail hearing loss, mixed sleep apnea’s, but otherwise it’s mostly my breathing. Thanks for replying

Wendy x

[Spanielmadlady in reply to Numptybrain]

For 4 years my breathing was my main issue Yes I have a list as long as my arm lol.joint pains,fatigue nasal ulcers,digestives issue to name a few.I finally got a diagnosis after a kidney biopsy in 2018.i have class v Lupus nephritis, sjogrens,hashimotos and b12 deficiency anaemia ,x

[Numptybrain in reply to Spanielmadlady]

I get mouth ulcers, digestive issues joint pain but diagnosed with arthritis spinal and joints also osteoporosis, again list is endless.

Thanks

Wendy x

[michaellasmith Administrator]

Hi Numptybrain,

Welcome to the LUPUS UK Community Forum! I hope you have found it helpful so far.

I imagine you are well versed in research and knowledge, however if you would like more information about lupus or related conditions, you can request or download our free information pack using the link below:

lupusuk.org.uk/contact-us/

You can also message me privately at [e-mail], with any questions, or call our helpline for advice or just a chat, anytime, on 01708 731251, which is open Monday to Friday 9am until 5pm.

Warm regards,

Michaella 😊

[Numptybrain in reply to michaellasmith]

Thank you

Wendy x