British Lung Foundation

6 years living with multi system sarcoidosis

It’s been a while since I’ve been on here but I remember it as if it was only yesterday. Where do I begin 6 years ago my life was totally torn apart when I got my diagnosis of multi system sarcoidosis my god was I scared (VERY) I was totally thrown into the unknown of sarcoidosis I remember at the start of treatment 120mg of steroids daily totally made me feel at my most vulnerable the effects of the steroids totally ransacked my head emotionally I thought I would never get through this at all . Every day was a massive struggle physical discomfort in my lungs every step I took was hard work without getting out of breath but now 6 years on I’m on steroids still but at a amazing low level 6mg daily. I now go for yearly check ups which has been showing improvement 4% I know that may seem very low for 6 years of treatment but it’s positive sign I know my sarcoidosis would never get into remission but I’ve learned to accept that emotionally but as long as my lungs can improve I’m happy. And I now can accept my diagnosis I feel personally for myself was the battle of accepting it I still have bad days physically when my lungs hurt bad but I now know how to deal with it when things aren’t good. Thank you to you guys who responded to my fears nearly 6 years ago xx.

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Facing such an illness cannot be easy, I am glad you have managed to reduce your steroids intake and are in good spirits. Take good care x

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Thank you so much means a lot to me x

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With lung conditions the acceptance and determination to improve and do better is half the battle. The other half of the battle is staying in that positive state no matter what is thrown at you.

There are times when we slip but it is strength of will that pulls us back.

You are doing fantastically well.

Wishing you all the best.

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Thank you

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Hi Summer, 6 years on and your doing pretty well so that’s great news. Keep fighting this horrible disease and stay strong. Xxxxx

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Thank you so much xx

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Hi Summer ! I just can't imagine how you survived on that dose of steroids. It must have been hell. But if it achieved the result of improving your condition, then it was worth it. Long may your improvement last.

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I am glad you are feeling better and more positive. It is never easy to deal with serious illness xx

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Thank you it’s been a long journey and a constant journey but it’s about being positive as positiveness can help you get a long way xx.

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