Any advice

[Numptybrain]

Hi I’ve gone down a very long road of years of pain swelling but Ana negative. Over a year ago I started with pleural effusion bilateral then pericardial effusion, respiratory kept saying connective tissue disease. February rheumatologist got involved and started me on 20mg prednisone, I’m now on 10mg , my pleural effusions have practically gone pericardial almost I’m getting another ct scan next month which will hopefully show the decrease if not none existent inflammation. Next step is immunosuppressive treatment. I was diagnosed with Serositis by respiratory but nothing as yet by rheumatologist, I have osteoarthritis and osteoporosis I’m 61 , I did have swelling years ago but now only swollen hands in the morning and a swollen left ankle at night. I do get a lot of upper and lower back pain but I do have spinal issues, my wrists and ankles were painful but that has stopped with prednisone. Basically I have not got a clue what the Serositis can be linked with ie which autoimmune.

Thanks for listening

Wendy x

[KittyJ]

Sorry I’ve never heard of that but on looking it up you may get more help on the Lupus group as it seems to occur with that and there are a few posts on there about it.

[Numptybrain in reply to KittyJ]

Because I’m Ana negative it’s difficult with a diagnosis unfortunately.

[WilfDog]

I think you should try and get an appointment with your rheumatologist (easier said than done I know), as soon as you are able. If you know the next step is immunosuppressive treatment then just try and push for an appointment to get the ball rolling although it might be best to have one after you've had your CT scan. Good luck

[Numptybrain in reply to WilfDog]

Thanks, there must be loads of people out there who have autoimmune and don’t know what and it’s such a horrible position especially when people ask what’s wrong? I’ve always shown high inflammation but negative Ana . It’s took years to get to this stage so I suppose I will always be in the dark, my respiratory consultant believes more damage will have been done but only time will tell.

Thank you for listening

Wendy xx

[WilfDog]

Just keep pressing ahead with your questions. It's important for you to understand what is going on with your body. If you have to get a second opinion, do so. Take care. Gail x

[Numptybrain in reply to WilfDog]

The respiratory team are all for going for a second opinion if we get no where but they assure me the rheumatologist is onboard, I just wish he would show that enthusiasm to me

[WilfDog]

It sounds like everything seems to be covered. Unfortunately, sometimes, especially in these difficult times with the NHS, it may take a little longer, but hopefully, the consultants will collaborate to come to a successful solution for you. Good luck

[Numptybrain in reply to WilfDog]

Thank you