hydroxychloroquine: how long to take effect?

Hi all,

I was diagnosed about 18 months ago with RA. I very briefly took sulfasalazine but it didn't agree with my tommy. I then took methotrexate and was on that for a very long time. I had hardly any flare ups and learned to cope with hair thinning and loosing one day a week to brain fog. However it then affected my liver so was put on leflunomide which again seemed to really help and had the added benefit of no brain fog. However it was short lived as I got a very bad rash! After staying off meds for a months and having the worst flare up so far, I started hydroxychloroquine a week ago. I have been sore all week to the point where I had to take some tramadol today (and suffering from its side effects but at least I don't care about the pain at the moment). Any way, long story short (tramadol either makes me sleepy or chatty and I seem to be in the chatty phase just now), I seem to have forgotten to ask when I can expect to get the benefits of hydroxychloroquine. Does anybody know whether it has to build up over a number of weeks or whether I should expect results by now? Thanks :-)

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  • Hi, i beleive Dmards can take up to 3 months to kick in so may take a bit longer to kick in. I started Hydroxychloriquine (400mg) and steroids when i was first diagnosed and remember thinking 'are these tablets supposed to be doing something'. I think after about 2 weeks i felt a lot better but that was with steroids!! About 1 month later i was put on MTX as well. You can always go back to Rheumy team if you feel you are not getting better. I have been diagnosed for just over a year so still quite new to all of this. Hope you start to feel better soon.

  • Thank you. I will give it a bit longer but will get in touch with Rheumy team if no improvement. They're always very helpful...

  • Hi, this is definitely the place to get chatty at this time of night!! I'm so sorry you're having a rough time right now RA is horrible when you haven't got your meds right.

    I've a limited experience of hydroxy, but I took it just over 2 years ago. It didn't work for me but I seem to remember them saying it could take some time to work, I think they said it would take 6-12 weeks but I would have to take it for a lot longer before they could rule the drug out for me. I took it for 4 months, flared badly on it so they decided it wasn't working and took me off it. I'm sorry if this isn't what you want to hear. Perhaps some NSAIDs might help more in the meantime?? I really hope you feel better soon and I'm sure someone else will give you better information who perhaps has used it successfully. Take care Rx

  • Thank you. I usually don't have sleepless night but tramadol made me wide awake last night. Sometimes it makes me sleepy, sometimes it's the opposite. I know from being on MTX that flare ups can be drastically reduced so I am a lot more hopeful than when first diagnosed. Just need to find the right combo.

  • Hi, I was on Hydroxy when I was first diagnosed and I could see a definite improvement after about 3 weeks. But I then had t come off it because of other side effects. Clemmie

  • Thanks. That makes me hopeful in case it's not quite as long as I feared. I wan very dizzy during my first week in hydroxy but that seems to have settled now so just really hoping they will work soon

  • It was eight weeks or so for me. I had it added in to my cocktail of drugs and it did take a long time to work, but it did eventually. Polly

  • Thanks. I really hope it will work for me too!

  • Hiya, I found it took a good 12 weeks for the full effects to kick in and then it was wonderful compared to pre-hydroxy. Like charlotte, I was put on steroids as well to tide me over the waiting period and they really helped. I wonder if your GP would be willing to prescribe you a short course. Good luck - I hope the hydroxy helps for you.

  • Thanks. I really hope it will work as I really enjoy not having the brain fog I experienced during MTX. I can get two more steroid injections but the first one didn't help at all so not sure if it's worth it

  • I was given steroid tablets to tide me over so might be worth asking if they'd be suitable for you. In my experience the injections are good for targeting individual joints that are playing up but not much good for when everything's making itself felt at the same time!

  • HCQ is a fairly innocuous drug with few side effects. I was given it just as a top up for Methotrexate as they work better in combo. It shouldn't be a problem but they say to have your eyesight checked once a year as this is very rare but possible side effect. It seems that like me your MTX is losing effect so I've just been put on the latest biological TOCILIZUMAB (trade name RoActemra). It's a once monthly infusion but a sub cutaneous injection is available soon. I'm part of a 64 week trial that reduces the MTX in one group as part of a study to show the effectiveness of Toc without MTX which is very important for people who can't tolerate MTX. So far just two infusions and it's wiped out my RA. No inflammation ESR CRP < 1 No swelling, no pain no stiffness. I think I'm in remission. so soon can hardly believe it. This trial is available and ongoing to anyone anywhere who meets the criteria and there are quite a few. No infections, (TB) not on anti TNFs, haven't had steroids in the too recent past, physical functions okay organs etc MTX failing to control etc. Ask your rheumy about this wonder drug. Roche pay all expenses and for the drug too and you'll still get it on NHS if it works

  • Wow that sounds great. I am so glad you have found something that works so well. I'll ask my Rheumy for more info next time I see her.

  • It took a few weeks to take effect, and it is fine for me. I have to take 2 other DMARDs too though. It helps my Sjogren's symptoms too.

    So now I don't need painkillers or steroids or NSAIDs.

  • Glad to hear your meds are working out for you. I really boosts my morale every time I read that someone is of pain meds as it reminds me that it's just a matter of finding the right combo.

  • I have been taking it for about 8 weeks now and cant feel any difference, i'm still in pain almost every day somewhere in my body, although I am on MXT and Sulfa, just waiting to see my consultant at the end of October.

    Sorry its not good news for you but it effects everyone differently so hopefully it will be good for you.

    Wendy.x

  • Sorry to hear you're in the same boat as me at the moment. Hope things will look up for us both soon. X

  • Hi, Ive been on MTX & Hydroxy since Feb this year, for me they both seem to take about 12 weeks to take affect, then I june because I was still having a few problems Sulfa was added, I now seem to be fairly free from swelling & pain. Keep going, but I would contact your Rheumy team/nurses for advice. hugs, Rie x

  • Thank you. I try to be as positive as I can since I was pain free on MTX. Glad you seem to have found something that works for you. I makes me happy when other RA sufferers find something that works.

  • Hi. I was diagnosed in May 2012 and was started on MTX, Hydroxy and Sulpha but with in 1 month the sulpha had me in A+E and hospitalized twice due to an allergic reaction. I carried on with 15mg MTX and Hydroxy until December when I was put on sub-cut MTX of 17.5mg and was even worse. I had to come off MTX and Hydroxy due to facial rash and my joints were more inflamed than ever. I decided in June that MTX just made me worse so the RA consultant allowed me to continue on Hydroxy and have been great since and my bloods are almost back to normal.

    Hope Hydroxy alone works for you too. Hugs xx

  • Seems you had as much bad luck with allergic reaction then me. The sulfa was a real pain for me but it must have been just awful for you. Glad the hydroxy works for you. I hope that i will be ok on it once it properly kicks in too.

  • Hi, I was put on hydroxy when first diagnosed a year ago. I was told I wouldn't feel any benefits for 3 months. Unfortunately after 6 weeks I had horrendous side effects. Then was given sulfa but could only manage that drug for 3 weeks. Now on mtx (5mg to start) but side effects haven't gone away after 8 weeks! Seeing rheumy end of October hoping they won't increase it. Still in pain and soreness. I think its just a matter of finding the right drug for you. Xx

  • Sorry to hear you have such bad luck with meds and still not pain free. The brain fog and hair thinning was awful when I was on MTX and never went away but was willing to live with it as I was pain free most of the time. I hope that we both will find the right combo soon!

  • I started om Hydroxy & was told it would take up to `12 weeks, Sulpha was then introduced & then MTX, I'm sorry to say I'm still in a lot of pain & they are investigating further. Sorry it's not positive but I think we all react differently which must make it hard for the rheumy's to find the correct treatment!!

  • Sorry to hear you are still in pain. Hope your Rheumy comes up with something soon. I always feel so positive after seeing my Rheumy but wish I had better news whenever I see her...

  • Hi ive been taking hydroxy for about 3 months now and it took about 6 weeks to work. This is all I take apart from a few pain killers for a bad back which im told is nothing to do with RA. I had a few side effects to start with but now have no problems. I hope they work for you soon x

  • Thank you. I am so happy to hear it is working out for you. My RA journey started with a bad back which was unrelated to RA too but while seeing my GP I mentioned sore wrists and she picked up on it straight away.... Back is better now so just hoping I will get the same benefit from hydroxy. And hope your back will improve. X

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