Hi everyone, it’s been a while. I’ve had a very long journey involving numerous hospital admissions and investigations into why I’ve got pleural/pericardial effusion’s and although my respiratory we’re saying connective tissue disease, the rheumatologist I seen wasn’t fully onboard as my ANA is negative. Well the rheumatologist decided to put me on prednisone (steroids) as a diagnostic route on March 27th and on Friday respiratory scanned my lungs to find no fluid on right side and only 300mls on left side which is a massive improvement one which has never been seen so the steroids are working therefore proving respiratory were correct in their diagnosis. They have spoken to my rheumatologist who is now going to make further investigations and is keeping me on 10mg of prednisone instead of removing me from them in May.
It’s been a very long road but I’m finally getting there, very out of breath and slightly larger than I was, thanks to steroids, but I’m just thankful I’m still here. Now the diagnosis begins, he’s suspected polymyalgia rheumatica which I had in my early 30’s and I couldn’t feel my left side but polymyalgia is very rare with pleural/ pericardial involvement so it could be a mixed connective tissue disease, who knows I’m just thankful it wasn’t mesothelioma which was first indicated.
Thank you for all your help, tolerating my rambling, no doubt I’ll still ramble! But please withdraw Erns pictures and blackbirds of course and the lovely poems to cheer us all up I don’t know how I would have coped. It’s been and still is a very scary, unknown, part of my life. My lungs have changed forever, I still do my walks but increasingly slowly and with a great deal of spinal discomfort now, but that’s another thing. Again thank you, everyone for just being here.
Wendy xx
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I'm glad you're finally getting there and the steroids are working. The side effects can be horrendous but I'm finally down to 10 mg. I'm on the long journey also with no answers yet but remaining hopefully. It's scary how your life can change so quickly isn't it? X
Yes it is, very but it could have been so much worse for me as they initially suspected mesothelioma. They have blamed Serositis for mine but haven’t a clue what’s causing the Serositis as it’s affecting the pleura/pericardial and my stomach lining so it’s polyserisitis. Either way I want it gone and don’t want it back.
What a terrible time you have been having Wendy but glad to hear things are improving. Getting the correct diagnosis is the most important for you to move on so fingers crossed it wont be long. I always feel so much better when on steroids x
Yes, my pain is a lot better apart from my lumbar spine but unfortunately that’s down to needing another operation, elsewhere apart from my breathing I’m fine but I have put on weight quite quickly even though I’ve been careful, I’m not a big eater due to Serositis in tummy but I’ve ballooned on prednisone, my walks have been getting shorter due to my shortness of breath which doesn’t make sense as I wasn’t this out of breath pre steroids.
I can’t believe it, I don’t eat carbs and I make my own sweet treats so I know what’s in them using dates or just yogurt and fruit with honey or sweeteners, it’s unbelievable from just 13st to 14st 10 pounds in weeks!
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