Hi, I’m not formally diagnosed but have been on hydroxy for about 6 months, I think it has helped but obviously that’s been a slow and subtle response.
Has anyone stopped taking hydroxy to see if their symptoms return and if so, how long was it before they noticed symptoms returning?
I very recently was told to cut down from 400 to 200 daily. All my symptoms came back after a week, I forgot how bad I was before I started taking it. After asking my rheumy, she's put me back up to 400, so happy! And it'll be reviewed at my next appointment.
Hey comeonpeeps, I’m only on 200mg daily, just curious as to what might happen if I stopped, it’s such a subtle drug that many people don’t realise how much it’s helped til they stop, as I’m still undiagnosed I’m still trying to understand what’s going on with my body!
Thanks for responding.x
It honestly feels worse now than before I started. So in my case it certainly does work for me. In fact it started to change my life after a week.
In what way has it helped you?
Hey, night/day sweats stopped after about 2 months, pain in hands/elbows/knees reduced right down, so I was starting to sleep through the night for the first time in ???
Tiredness is still a huge problem, but I feel like it has plateaued everything else to a manageable level, before I was lying awake feeling like my blood was literally crawling so ?
That's good...not so good about the tiredness, have they offered you a higher dose? Are you worried that they'll take you off it hence your original question?
My fatigue disappeared on 400 mg, it worked wonders! I've been kind of diagnosed with subacute cultaneous lupus and inflammatory spondyloarthropathy. Not sure which condition causes the pains as yet but the hydroxy helps so that's the main thing.
Not been offered higher dose yet as had only been on it 3 months at last appointment so they wanted to see how 200mg worked. Not going back for a few months now.
No, not worried they will take me off it, just curious for myself how much it’s doing for me because it’s not like other drugs that give you quick relief so you know they’ve worked...how do I know if my ‘flare’ hasnt just burnt itself out rather than it being down to the hydroxy working (hope that makes sense)!
I think you'll just know after giving it another month or two.
It took me eight months to see results from Hydroxychloroquine. I would not recommend stopping As I’ve had a pretty miraculous benefits from it. If I had given up after six months I wouldn’t have had that. I hope you will give it a try. I know it does it work for everyone as well as it has me, but don’t give up on it so soon. Good luck to you, Nan
I have SCLE and Sjogren, initially after first being diagnosed I was encouraged to reduce my hydroxy from 400mg to 200mg as they felt my UV exposure would be less during the winter. Within a couple of weeks my flu like symptoms returned & I had an overwhelming unwell feeling & achy legs etc. So was put back on 400mg. It took many months and up to a year to go back to feeling as I did initially taking it.
I should say I am now taking a second autoimmune med in addition to hydroxy as the sjogren has become more advanced and i am still experiencing major fatigue & many other symptoms attributed to this disease... so still battling autoimmune even with the meds. ML
I’ve been on 200mg since June ‘99. I recently stopped-right before Christmas-to see how I’d feel without it. So far, so good. Actually, I feel better and seem to be sleeping better. My rheumatologist wasn’t very happy with me, but I know my body well enough to know if I need to start taking it again.
Hi Whale, were you put on hydroxy for the inflammatory arthritis, and what type do you have, do you know?
I've either got that or AS, not sure yet.
If it works don’t stop. Best wishes Kevin
Hi, I would be very wary about trying to reduce/ come off hydroxychloroquine. I hated (still do but have grown to accept the necessity) medication when I first had lupus and I tried 3 times to come off hydroxy - there was no change for a few weeks/ even possibly a month or so but then each time I had big flares - the last time was a life threatening one (I didn’t come off hydroxy on purpose this time, I went on holiday for 3 weeks and lost the drugs on the first day 😬).
I think it’s important for us to remember that this drug doesn’t just make us feel better and manage our symptoms but it can also stop the disease from progressing so if your rheumatologist thinks you need it I’d stay on it.
I completely understand why you might not want to though - taking all these medications is something we all have to come to terms with and it’s even harder in that stage where you don’t have a definite diagnosis. Hydroxy is quite a mild safe drug though.
I’ve struggled with taking high steroids but again thought I knew my body best and reduced them against my rheumatologist’s advice. The result was a big very unpleasant brain lupus flare and a big telling off from my rheumatologist. He’s been so great and worked so hard to try and get me better that I felt that I’d let him down and the penny finally dropped that he knows better than me how to manage it - not the case with all doctors though with lupus but if you find one you respect and trust I’d stick with them and do what they say. I’ve learnt the hard way that these meds are essential to us.
Hope it starts working well soon and you feel much better
X
Well it's a bit up in the air. When I had UV tests, I was told that it was highly likely I had SCLE in December, also last week I was told I had inflammatory spondyloarthropathy. Today I've had nail fold capillary tests, in which, in my opinion are positive for secondary raynaud's, but will have to wait for the results. A bit confusing really.
I went from 400 for 20 years to 200 on my own. I would not suggest that without talking to doc. It is important to get your eyes checked.
Where is your pain?
Ouch! I have it in every joint apart from elbows and shoulders. MRI confirmed it in spine and sacro joints.
Confirmed in achilles too.
All the way down from my neck to the pelvis/sacro joints. I had an ultrasound on my achilles two years ago but an MRI has been requsted for there now. I don't know really, others might be able to help. Although good footwear will help for now. The increase in hydroxy should do too.
Has it been looked at properly? It needs to be established how much, if any, damage has been done.
Are they waiting for results of next scans to diagnose? Have they mentioned another medication?
Hydroxychloroquine has a cumulative effect & can stay in the body up to 6 months. After 2.5yrs mine was stopped completely. I thought odd things were starting to return but then told myself probably not so I carried on. Around 3 months my eye inflammation was getting so bad I had to go back to steroid eye drops. Since restarting it eyes back under control. It takes up to 12 weeks for it to start working.
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