I am starting to wonder more and more, how many folks have subacute cutaneous lupis vs systematic in the UK? I have been trying to find out more about it and I recently cut back (as advised) on my hydroxychloroquine for winter and in a couple of weeks, I started to get flu like symptoms, aches and feeling absolutely 'wiped out' and this was without UV exposure (so had not yet moved to my skin). I am back on my normal dosage as It was obvious that reducing my medication was not working. I understand lupis is individual, but there must be commonalities and experiences that can better prepare me to deal with it. Areas such as tiredness, hiding from the light, not being able to finish sentences ie a flare up, other auto immunes beginning? Trying to juggle work, studying for a qualification and trying to balance this with a family life, all so challenging.
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