Hi Annie, thank you so much for your detailed and emphatic reply. You've confirmed my concerns totally.

Firstly, I live in the UK. The benefits of the NHS are immense and we are very lucky but there are budget-related disadvantages as you can imagine with anything that is free. I take 10mgs prednisolone (reducing currently to see if this is contributing to weakness), Mycophenolate 1g daily, Hydroxychloroquine, AdCal D3, Omeprazole. My Lupus on its own is not too much of a problem and is an integral part of my life.

My spirometry is not too bad, my airways are narrowed for some reason despite never having smoked, my PI Max at 32 was considered moderately weak and the PE Max was 'mild' at 51. My resp consultant merely stated the figures in my recent letter then signed out with 'Yours Sincerely'!! No follow up, nothing . .

The docs are quick to consider the cause to be my slightly low vitamin levels however, these levels have increased whilst my resp tests have deteriorated. I recently emailed my results to the British Lung Foundation Helpline for their comments and they rang straight back & were emphatic that I should push for referral to a regional centre for resp medicine so I realised they must be quite low. My resting O2 sat is good and I breathe ok at night so long as I lie in the recovery position!

You have given me plenty of fuel for my fire when I see my rheumatologist in a couple of weeks time. Do you have resp problems with your MG? D you find shivering wears your muscles out? I suffer badly with cold intolerance and shivering takes everything out of me, scarily so.

Once again, thank you so much. I have much more determination now.

Keep well. Clare