hydroxychloroquine

[BK47]

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!

[tannallatc]

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?

[BK47 in reply to tannallatc]

sorry to hear about your flare! Yes I’ve emailed my rheumy nurse for advice. I would stop very gradually as I’ve been taking them for years.

Thanks for replying x

[Chris21 in reply to BK47]

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 😊

[BK47 in reply to Chris21]

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!

[Hidden]

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. ✨

[BK47 in reply to Hidden]

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

[Hidden]

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.

I hope you’re soon sorted, take care ✨

[BK47 in reply to Hidden]

thank you x yes I’ve had lots of bloods done x it takes a while to actually see anyone but the rheumy nurse is good at emailing replies to queries.

[Christineosh]

you can stop any drug you just have to wean and cut them down slowly.