Hi. I was diagnosed with lupus in June and am on steriods and hydroxychloroquine. In 10 days time I would have been on hydroxy for 3 months. My consultant said that I should feel significantly better when the hydroxy starts to work and that should be between 2 - 3 months. I don't feel significantly better, at best I would say i'm functioning rather than living.
I can handle the pain and discomfort but this fatigue is destroying my life. My husband is amazing but I want him to have a great life and this isn't one!
Does anyone have any advice or experience on how long the hydroxychloroquine can take to work. I did get my steriods down to 8mg daily but had to put them back up to 10mg. I'm due to half my dose of hydrox in 10 days and so worried things will get worse!
Thanks
Zoe
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Zoeblu
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It took me a little longer for it to kick in ,But i am not sure why they want to half the dose.
As for the Fatigue its my worse enemy as with most others<you will have to learn to manage this by resting and pacing yourself,there is no quick fix for this you will have to find your own ways to help you.
They say six weeks but I was off work for seven months and even then it was a struggle to be phased back on light duties. My own experience was after a few weeks I noticed small daily improvements until the day I managed to wash the car - big mile stone. I still do whitewater kayaking but need to manage how much I do - personally a positive outlook is as good as the meds - All the best - Malcolm
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