Coming off Hydroxy

[Montysmum1]

Due to bad side effects, nausea, headaches, dizziness and insomnia I asked to reduce my dose of Hydroxychloroquine to every second day and slowly come off for the winter months. I am still feeling sick everyday, the insomnia is slighter better but I get shooting sore heads....please can someone give me an idea when I might feel better. I am diagnosed with Lupus Profundus. .🤢😪

[Krazykat26]

That's a tricky question Montysmum..how long have u been taking hydroxy? R all of those symptoms related to hydroxy or is it your lupus symptoms? All I can really say is that I take hydroxy n when I have tried to reduce it my symptoms return with a vengeance usually after a week/10 days. 🌈😽😽Xx

[Florence91]

M.ontysmum1 - sorry you are feeling so rotten. Did you have these symptoms before you started hydroxy? What dose? Are you taking it with food? I have been on hydroxy now for 13 years - forvyears on 400mg, last couple on 200mg and never had any of that. I took the 400mg in split doses part with breakfast and half with dinner. I have had v bad headaches dizziness etc but it was lupus not medication. When do you next have a review? Best wishes

[tdbsnoball]

Im dealing with lupus also nd have been for awhile now but im also taking hydroxychloroquine and it doesnt give me those effects at all! Mite tell or check with ure specialist or doctor 2 see if u can change ure script!!!

[Montysmum1]

I've been on them since March,200mg daily. I have gone through all the brands and thought Zentiva agreed wi me the best. But lately I just feel shocking. I got bloods taken but never got any results ? I never get to see anyone because of Covid I just phone my gp and he says he doesn't know why I feel so ill?? I phoned the dermatologist who put me on them and she said to try coming off them gradually and see if I feel any better.....its basically get on with it yerself😒

[Florence91]

That is really not good enough for you. Please ask your GP to redo your bloods and for a rheumatology referral in view of your symptoms. 200mg is a low dose so should not cause all that. Good luck

[Poppyfields65]

I've been on 200mg for over 3 years and never had any side effects at all. I think like others have said you need to look at the whole picture, narrow down whether it's really side effects or symptoms of your Lupus. If you've been on it for a while without side effects check if you are currently taking a brand you haven't had before. Worth talking to your gp ASAP.

[Montysmum1]

Thank you x