confused

[Numptybrain]

Hi everyone, don’t know where to turn but adviced this may be the best place. I’ve been battling pleural/pericardial effusion’s bilaterally for over a year, respiratory consultant is convinced this is Serositis caused by connective tissue disease possibly lupus sle however I’m ANA negative so rheumatologist involved is very dismissive but started me on prednisone 20mg in march, my pleural effusion got a lot better until he weaned me down to 10/5 mg different days are it all came back. My respiratory wants me on immunosuppressants asap, rheumatologist is willing to trail me for 6 months and if I progress remain on them even though he is adamant this is not lupus!

I feel I’m never going to find out correct cause of my effusions and rheumatologist isn’t a very nice man to talk to. My respiratory are brilliant as I’ve had numerous infections they’ve had to deal with including sepsis and saved the day so to speak.

anyone been in this terrible situation?

Take care

Wendy xx

[Spanielmadlady]

Hi N B. Yes the only thing that keeps my lungs stable is pred.as a result I'm steroid dependent. When I went onto mmf I had 3 stable yrs until Nov 21.then I had an unstable spell for about 18 months. They are now considering tacrolimus.

There is my potted lung history in my reply to tess post about feeling alone . Kind regards SML x

[Numptybrain in reply to Spanielmadlady]

Hi thanks for reply, they are going to start me on mycophenolate . With any immunosuppressive there are infection risks so it’s going to be tricky.

Take care

Wendy xx

[Numptybrain in reply to Numptybrain]

Sorry realised you were on MMF

[Spanielmadlady]

I've been on it for 5 yrs now. Struggled with bad headaches and nausea for about a month and with every increase.its not tricky if you are careful. Every cut no matter how minor went septic for the first few months too. At the first sign of anything even a cold it's stop mmf and get antibiotics. Worth while having a rescue pack in. Avoid anyone with a bug .I don't hug or kiss anyone either or go near crowds especially indoors. Get all vaccinations inc shingles and RSV in the autumn. Bloods will be weekly the bi weekly then monthly. If I can help with anything else feel free to message x

[Numptybrain in reply to Spanielmadlady]

You’ve been a huge source of help already. It’s so difficult when you are stuck like this especially when you’re already high risk for infections, I’ve got another bacterium pneuminae going on now.

Take care

Wendy xx