I’m having problems which I’m sure are caused by hydroxychloroquine - breathlessness and muscle weakness are terrible. I’m thinking of asking rheumatologist if I can be phased off them. I have no idea what will happen to my lupus if I stop the meds but I don’t think it’s wise to continue and get weaker and weaker.
Does anyone know if hydroxychloroquine can be stopped and what are the consequences!
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BK47
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Hi, I've recently had to stop due to side effects and it has resulted in a bad flare, so be prepared for that if you stop. Is it possible for you to speak to your rheumy team and take some advice?
hi, I’ve just had mine reduced from 400 to 200 , it’s been a few weeks and so far no pain problem. I have found that my gut issues have got better! So I’m thinking if my pain increases I may try upping paracetamol rather than the hydroxychloroquine. Physio have also helped with muscle weakness. Please don’t do it without first seeking advise, I see above you say you will 😊
thanks Chris. I will definitely take Rheumatologists advice and reduce very gradually. Glad you’re doing ok. I take paracetamol too- couldn’t be without it!
Hi
Yes, it can be stopped if you check with your medical team first. I was taken off them by the Rheumatologist via a telephone consult as my side effects were pretty vile. She wants to see me in clinic to do further tests etc, that was in November - I’m on the clinic list to be seen asap but due to strikes and backlogs I’m still waiting - unmedicated… 😬.
It’s difficult to say about how discontinuing HCQ affected my flare rate as my Lupus causes rumbling constant background flares that themselves flare up into bigger flare. When I came off HCQ the side effects tapered off and I felt more like ‘me’ again, still ill but the sort of ill I was used to being 🙄 - I was on 200mg for 12 months.
I hope that helps you though, we are all so different with different illness patterns. ✨
thank you so much for replying. I’m very encouraged by your reply! I’m still waiting for a response from rheumy nurse but have left out 1 day a week. I’m going to reduce really gradually and see how that works.
Hope you stay as well as you can x
I hope the nurse is helpful, as weakness and breathlessness isn’t good. I tend to put everything down to my Lupus, when occasionally it’s not the case - I’m sure your Lupus Nurse will have you covered though and do bloods etc or recommend you get them done, if you’ve not already been checked over by your GP.
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