After having been in remission for about a year, my rheumy suggested I reduce my dosage of hydroxychloroquine from 200 twice/day to 200 once/day.
About 3-4 weeks later, I'm having new joint pain and trouble sleeping.
Wondering if this could be the effect of reducing dose? I didn't imagine it would happen so quickly! (And was hoping it wouldn't happen at all!) 
I would say from my experience that yes reducing hydroxy has the same effect with me.
I was diagnosed with SCLE in 2017 n was started on hydroxy which helped with many of my symptoms. After a few months dermy asked me to reduce to half dose..2wks later n with symtoms worsening I increased again n symtoms eased..I decided to try reducing again n the same thing happened!
Recently-2 weeks ago I got a letter from dermy asking me to reduce hydroxy again (I'm on immunosuppressant now) which I duly did..same as u..reduced from 400mg to 200mg per day. I increased it again yesterday because symtoms have come back with a vengeance!! I'm fortunate in the fact that although dermy suggests the reduction he doesn't alter my prescription so I still have enough tablets to increase again if necessary.
U have tried to reduce n r having symtoms..would it be possible to contact your rheumy to advise u?
That's the thing with this condition..u can go along quite well n then the docs mess about with the meds..n BAM!! Back to square one!!
When this has happened to me I just increase it again n then tell my dermy what happened when hydroxy was reduced..I keep diary of symptoms n take pictures of my skin involvement.
I understand how disappointing it is when you've been fairly well for a year n now you've got symtoms returning due to drop in hydroxy..hopefully it can be remedied n u can get back on track xx
Thanks, Kat. Sorry to hear you’ve experienced something similar. I’ve put a call into rheumy and am waiting for a response.
Hi Jaybz l felt well for a while and came off it completely but the fatigue knocked me for six so I’m back on 200 a day. When first diagnosed l was on 400 a day but new guidelines go by weight and mine was reduced to 200. Hope you feel better soon
I am very interested in your post and the other responses. My new Rheumatologist upped my Hydroxychloroquine to 600 mg daily. I developed Macular Oedema and reduced my dose back to 400 mg that I had been on for nine years. The Rheumatology nurse on the helpline suggested I stop it altogether until I could be seen . When I saw the Rheumatologist he refused to put me back on it and said the pain and fatigue I am now feeling is just Fibromyalgia as the Hydroxychloroquine takes 8 months to wear off so if I am getting symptoms it is not Lupus related. I hope you get a more understanding response.
Cecily, I'd get a 2nd opinion/research before listening to the new Rheumatologist who upped it to 600 mg! Gotta be some explanation. As it is, sounds like you've reached the "toxicity guidelines" with 400 for 9 years (they also add up the cumulative threshold), as did I on my 6th year. As they say, you weigh the benefits with the risks, and after an unpleasant 1.5 years off it, I'm back on, with 6 month eye exams of course.
My other thoughts of those who went 400 to 200, is why not at least taper to 300?
400 was great for me, 200 not so good. 300 worked ok.
Now with the weight guidelines, I'm on 200 a day with 100 on Sat & Sun.
Seems ok the past 4 or 5 months but other Lupus nasties have hit me all this year and I'm back on high prednisone, so perhaps I haven't noticed any lower hydroxy symptoms since my joints and aches just love that prednisone. My insomnia and mind is a bit psycho though!
Thank you, we are very understaffed in Rheumatology at present. In my area we are two Rheumatologists down. I refused to see one who missed my APS nine years ago and there are another two in the hospital I had to go to to see this new one but they are under him. I am told that I will be allocated to a new Rheumatologist as soon as one is recruited. I have to hope that one is more thorough and considerate. I am very depressed with everything at the moment and in no frame of mind to fight for my rights. No one wants to take medication all the time but life is so relentless when you wake with pain and fatigue then cannot sleep. Thank you for the advice x
doctors reduce patients meds, insisting they are in remission. They give no consideration to the high probability that patients are possibly experiencing a medication induced remission. Therefore if they reduce the very thing that is inducing the remission, then lupus will flare up. This has happens to so many lupus patients and often with dia consequences. This has happened to both my sister and I and we have both suffered irreversible organ damage as a result.
I say listen to your body and increase your meds if your symptoms are getting bad. Best to be safe than sorry.
To be honest, I was keen to reduce the meds, as I was hoping I wouldn't have a relapse so soon, and thought it would be good to have another med in my arsenal if I had a flair, and didn't want the undue risk of eye problems. Looks like I may have to take the risk!
Absolutely it could happen. It happened to me two days after i reduced hq
What happens when symptoms return after starting hydroxychloroquine ?
Friends...off hydroxychloroquine, what do you think?
hydroxychloroquine and nerves
