hydroxychloroquine : I’m having problems which I’m... - LUPUS UK

LUPUS UK

32,248 members28,608 posts

hydroxychloroquine

BK47 profile image
BK47
9 Replies

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!

Written by
BK47 profile image
BK47
To view profiles and participate in discussions please or .
Read more about...
9 Replies
tannallatc profile image
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 profile image
BK47 in reply totannallatc

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 profile image
Chris21 in reply toBK47

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 profile image
BK47 in reply toChris21

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. ✨

BK47 profile image
BK47 in reply to

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.

I hope you’re soon sorted, take care ✨

BK47 profile image
BK47 in reply to

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 profile image
Christineosh

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

Not what you're looking for?

You may also like...

hydroxychloroquine?

hi been told by my rheumatologist I need to start taking hydroxychloroquine and wear SPF50 daily. I...

Hydroxychloroquine

I came home today to a letter from consultant, saying that I can start the hydroxychloroquine...

Starting Hydroxychloroquine advice….

hello lovely people, I’m starting Hydroxychloroquine this coming Thursday. I’m praying works as it...
Flakeyy profile image

Opthamology appointment re Hydroxychloroquine

Are any of you going to an Eye hospital for the yearly checks if taking hydroxychloroquine? I’m...
lizp28 profile image

Hydroxychloroquine

Hi, my new dermatologist has said I have discoid Lupus as well as systemic and will write to my...
MandaM profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.