Diagnosed with lung Sardcoidosis yesterday

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Hello everyone. I'm a 51 year old lady who was diagnosed with Lung Sardcoidosis yesterday.  I've had problems for two years gradually worsening during that time.  During the last 4 months I've had blood tests, a CT scan, breathing analysis and a bronchoscopy resulting in the diagnosis.  I honestly thought I may have lung cancer as appointments towards the end were brought forward readily so hearing I had sardcoidosis was a relief. However, as the Lung Consultant wasn't very familiar with the disease and rather vague, I've researched the web and the forum here and I'm now very concerned I may have under estimated this disease.  I've been prescribed initally with strong steroids being assessed with an appt with the Consultant in six weeks time with a view to reducing them.  As I had a hysterectomy 18 months ago I've also been prescribed tablets to counteract the bone density problem.  Has anyone been in a similar situation and what are your thoughts?

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  • Posted

    One other thing Maria, if you have a regular appointment with a specialist, make sure you see him on time, also you shouldn't worry about bone density too much, that can be controlled with Calcium tablets, once your body has settled down with the steroids it will hardly make any difference to your everyday living, my wife is now 73, she was diagnosed when she was 28 and apart from the first few years while the condition was being controlled, she has had a normal life with regular checkups.
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    • Posted

      Thanks so much for that Alan.  That makes me feel so much better!!!! I'm on calcium tablets so hopefully that will counteract the effects of the steroids.  When I first read about this condition it really worried me, but I feel so much better having read these messages! Thank goodness we have access to the internet to actually have contact with people with the same condition! Many thanks once again!
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  • Posted

    Maria

    I was in my thirties when diagnosed and now 62.

    You can live a normal life with the condition.

    Regards

    Tangles

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