Anyone got sarcoidosis?

[blouseenthusiast]

Just interested in other people's experiences, really, having been recently diagnosed. Are there natural / diet / lifestyle things which might help?

I have it but it has been dormant most of the time since I was diagnosed about 13 years ago. I was monitored for a few years and then signed off but briefly went back to the sarcoidosis clinic last year because of some erythema nodosum (painful red lumps) that suddenly appeared. In my case it has not been a problem but obviously I have been lucky.

Initially I felt really unwell for a while and as soon as I was diagnosed I eased up with work and tried to be as stress free as possible. Otherwise I have never done anything differently, and have lived completely normally.

From thinking sarcoidosis was going to have a massive impact on my life, I now barely think about it. I hope you have a similar outcome.

Thank you Iris, that's good to hear. Mine is lungs and lymph nodes and I have some chest restriction / breathlessness but not much else so am hoping it won't get worse. Do you have a consultant you would recommend?

I live in London so was sent to the chest clinic at St George's. They were excellent with me and made sure I had lots of lung function tests, plus eye checks, heart checks. They were also clear that I could go back to them at any time with any concerns. I recommend them if you are nearby.

I had some lumps in my lungs but they never progressed. Hopefully yours won't either.

I'll see what I can get by way of a referral - am in London but I haven't been that thrilled with my chest physician. Thanks Iris.

Anyone else had experience of this?

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Dh was diagnosed about 10 years ago. He goes once a year for a check-up but it has been dormant ever since he was diagnosed. He attends Southampton hospital.

It took ages to get a diagnosis, though. It reared up when he returned from a business trip and his legs swelled up like balloons: cue mad dash to casualty for fear it was DVT. In the end a medical student had the idea of checking for sarcoidosis and that's what it was.

Thanks gramercy - does he do anything at all lifestyle / diet- wise or does it just stay dormant without him doing anything?

Dads had it for about 20 years. He's now nearly 70. Touch wood it's been stable and he has regular checks. It affects his lungs and eyes. He is very ovweight, which doesn't help matters, but ws this way prior to the sarcoidosis and the steroids have exacerbated matters.

Hi There, I have had it for three years but was only diagnosed in Dec 2010. I am really achy in my back and knees and have swollen glands and the persistent cough. I start prednisone as soon as I can get DD onto formula ( not going well at present!!) From everything I have read the best thing seems to be to get yourself a referal to the Royal Brompton in London (your consultant or GP should be able to do this) they are the only specialist sarc unit in the UK. I really wish you all the best with it.

Thank you gonetoolong - I hope yours sorts itself out with the steroids. I think you are probably right about the Brompton from what I have read. Hoping you feel better soon.