Med reduction : I am a mum of a 21 year old who was... - LUPUS UK

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Med reduction

Sandie1964 profile image
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I am a mum of a 21 year old who was diagnosed with lupus last year . Last week she was phoned my her the my after her bloodsshowed raised levels with think of level enyemes. So they have reduced her hydroxychloroquine to one a day and half a mecaprine tablet 3x a week . However very quickly within days we saw a return of the joint pain and extreme fatique. She has to have another blood test the 5th in 6 weeks to see if the levels have improved but is not due to see rheumy until July. This is so frustrating she had been in such a good place prior to the med reduction. She had even managed to achieve a promotion at work because she was feeling so much better. So unsure what to do as she doesn' want to relapse to the feeling as bed as she was prior to diagnosis

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Sandie1964
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whisperit profile image
whisperit

Hello sandie64,

That's really difficult. As you know, hydroxy takes several months to build up levels enough to have a definite therapeutic effect. It also has a long half-life in the body (32-50 days), so it should be possible to reduce gradually without drastic effects. I would be quite surprised if a reduced dose had a significant effect after just a few days. Mepacrine's half life is a lot shorter - 5 days or so - but I know very little about that drug.

But in any case, July is too long to wait if her symptoms have worsened, so I would either see the GP and/or call the specialist rheumy nurse, if she has one.

Hope it gets better soon x

Sandie1964 profile image
Sandie1964 in reply towhisperit

Thank you for replying she has been pushing herself lately so it could that but as this happened the same time has med reduction I think it was easy to link it to that. She has another blood test in 2 weeks to see if bloods and liver enzymes are better will call and speak to consultants secretary (No specilist nurses at our hospital) and if no improvement will ask for another appointment earlier she as a full lung function test on Tuesday as well as had a cough for weeks

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