St Thomas Lupus Trust
1,178 members120 posts

Drug help

Hi has anyone had a bad reaction too the unlicensed drug macrepine iv been diagnosed with chillblain lupus but iv been struggling I was on a low dosage but was put up by the doctor in St guys since last week Thursday iv gone off all drugs advice by my gp as I ended up on hospital with very bad shiver shakes I couldn't control I was turning blue from the cold and finding it hard to breath but it wasn't that cold in the UK last week.

I'm still not ok, I don't know what's wrong with me as I don't feel my self has anyone had bad reactions on this medicine or is it just me suffering really bad. Any advice would be great

1 Reply

Were you seen by the lupus clinic? I would strongly recommend that you report this back to whichever department treated you at Guys they should also be able to tell you if anyone else has had the same reaction. Also if you need any medical advice about lupus please feel free to contact our lupus nurseonline here:


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