Hydroxychloroquine - symptoms temporarily worse before they get better?

Hello all, I'm quite new here and this is my first post. I was only diagnosed with lupus about 6 weeks ago (based on symptoms, history, bloods and family history of numerous autoimmune disorders) and wanted to wait until Christmas was out of the way before starting the hydroxy, in case I had a bad reaction.

I've had vague and numerous symptoms since I was about 21, after a particularly hideous episode of what I thought was sunstroke. I'm lucky, as I've had several periods when I've felt pretty much ok, but I'm struggling a bit at the moment, which is how I ended up getting sent to the rheumatologist.

So, now to my original question - has anyone found their symptoms initially got worse when they started hydroxychloroquine? I've only been taking it for just over 2 weeks. The first week I had no side effects at all, but this second week I've had a migraine (full aura, skull splitting headache, nausea, the works) every single day. In fact today it's not quite so bad, just a terrible headache. I've had more mouth ulcers too, my joints are very painful and I feel exhausted. I mean, I know they're all lupus symptoms anyway and I get them all at various times, but they just seem worse since I started the hydroxy.

I'm hoping this is my body throwing some sort of tantrum, before it settles down a bit and the hydroxy starts working to get my symptoms under control, but I suppose I'm a bit anxious in case this is all just indicating it doesn't suit me and I have to stop taking it?

Thanks for all the informative posts and the lovely, supportive atmosphere here. πŸ‘πŸΌ

Take care everyone :o)

29 Replies

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  • Hi there and pleased you got your diagnosis but sorry you have the reason to have one.

    Ok the hydroxy .When I started it on it i had migraines for a couple of weeks and tummy went into a full on argument with me but it settled down as body got used to it.It did take about two to three months to notice any real positives but others have had sooner results.I think sometimes when we start on a med it is usually because well we are actually worse than before and then of course we tend to be more conscious of everything while waiting for good stuff to happen so it can seem like its all worse to start so it may be that.On the other hand if you do find the negative side effects continue or get worse I would op to see Gp and discuss it.

    Here's hoping things settle down and you begin to improve real soon

    Take care x

  • Thanks LittleEffie, that's reassuring to know. Hopefully it WILL settle down soon! If I could get rid of the migraines, that would be a start. They are genuinely doing my head in. πŸ˜‰

    I suppose you're right, that the reason I'm in this situation now is because things got worse. And I wonder if I've become hypervigilant to all my symptoms because I'm acknowledging them now rather than trying to shrug them off as just my age - or my 'weirdness'?

    Thank you x

  • My experience was similar to effie's. Long term (5 years in) hydroxy is a key part of my cocktail of lupus meds. This time last year, rheumatology had me pause hydroxy for 5 months during initial immunology investigations. During those months I discovered how much I missed hydroxy, due to symptoms resurfacing. I'm back on hydroxy, and very glad to be. If you can tolerate & benefit from it, the benefits of hydroxy are cumulative. But do be sure to monitor your vision. And don't hesitate to tell your doctors if you suspect your system is disagreeing with hydroxy

    πŸ€ Coco

  • Thanks Coco, I'm starting to have less side effects now, so I will persevere. I'm glad you're feeling better now you're back on the hydroxy 😁

  • Hi, after three weeks on hydroxy, I woke up one morning and my whole chest was red. It looked like I'd spent the night in a nettle bush, and then had a bucket of scolding hot water thrown over me. Despite halving the dose, the rash spread quickly to my arms and legs. I stopped taking hydroxy after about six weeks by which time the rash covered about 90% of me. It does work really well for some though. If you are worried, let your rheumy/dermy know.

  • Oh, now that's interesting Diagnosed2012, because I initially started taking the hydroxy at the end of November, but I got a terrible rash on my neck after a few days. No one knew what caused it, whether it was the hydroxy or just the lupus, but I was advised to stop taking it until the rash went away and then try again. To be fair, this time there's been no rash, just the migraines, but maybe I am a bit sensitive to the hydroxy?

  • Hi! I briefly took hydroxychloroquine just after I was finally diagnosed with SLE. After three days of taking it I had a seizure after every dose (I'd never had seizures before) and they stopped when I stopped taking it. Months later the seizures returned as I reduced my dose of steroids so it doesn't look like they were the cause of the seizures but definitely triggered them.

    Most people don't react like this but we're all different!

    I hope things settle down for you soon!

    x

  • One thing I'm learning Cookiecutter is that we're definitely all different! Did the seizures settle down in the end? Must have been pretty scary? x

  • They stopped a few months ago and then the latest reduction in steroids triggered periods of paralysis where I am fully conscious and can feel but can only move my eyes - like a locked in syndrome thing. These seem to be settling too now. I'm not going to reduce the steroids again for a while!

  • I have Sjogren's. When I started taking Hydroxy. I also had really bad headaches and I considered ditching it. But I pressed on and the headaches went and I felt much better. I also take Mycophenolate now which has made a huge improvement all round. Good Luck !

  • Thanks bones-bones, it does seem to easing off a bit now, so I'm hoping I'm over the worst and that from here on I'll just start to see a benefit. So far I'm only on the hydroxy, but we'll have to see how that pans out............

  • I can only take one hydroxy as two gave me a terrible headache. I would call and speak to your nurse. You might suggest taking one one day then two the next so you can try to get it slower into your system. Don't suffer in silence.

  • I'm only on one a day at the moment adrienneioannou, just 200mg in the morning. I'm dreading going up to 400mg in case it triggers all this off again. I think increasing it more slowly might be the way forward. I don't see the rheumatologist until March though, which gives me plenty of time to get used to this dose, I suppose.

  • I have been on hydroxychloroquine for five years now, and suffered the daily migraine, sore limbs thing for a while, but now find that it has stabilised a lot of symptoms , so much so that at my last rheumatology visit, I asked to halve the dose, but within days had a really bad flare, so I am now back on full dosage. I think it takes time, but I also think you should check with your GP as to whether you are having a bad or allergic reaction. I do hope it sorts itself out and hang on in there! You can never say that we are an uninteresting lot...every person having their own, unique set of symptoms!

    Air hugs, xx

  • Thanks Musicteach, that gives me a lot of hope, much appreciated. Went to see the GP yesterday and he said he wasn't convinced it was the hydroxy causing it, thought it might just be the lupus, and advised me to keep taking it. I am starting to have fewer side effects, so I shall persevere x

  • Hurray! I have found that the combination of hydroxychloroquine and now methotrexate as well have enabled me to continue teaching, although I have cut down drastically on hours and I have been given back a life that is ok...I have flares, but mostly manage my life pretty well. More air hugs!!! Xx

  • It takes Hydroxychloroquine up to 12 weeks to become effective . My Rheumatologist gave me a steroid injection to stop the lupus symptoms until the hydroxy kicked in.

  • Fascinating πŸ‘πŸ‘πŸ‘πŸ‘

  • Mine won't even entertain the idea of steroids until she's seen how I do on the hydroxy evans, which is fair enough I suppose. Thankfully the migraines seem to be wearing off now, so I hope to have some benefits from the hydroxy in the next couple of months πŸ˜€

  • I was desperately ill at the time, continuously flaring so the injection of depomedrone necessary.

  • Hi Nurseladybird and welcome to our community on HealthUnlocked,

    You've got some great responses to your question on here.

    If you would like a free information pack about lupus and LUPUS UK then you can download or send off for one here: lupusuk.org.uk/contact-us/

    Additionally, if you'd like some more information about medication then take a look at our factsheet: 'LUPUS and medication'. lupusuk.org.uk/publications/

    Once again, welcome to the community.

    George

    LUPUS UK

  • Thanks George, I've just downloaded those 😬

  • I had daily head aches and digestive upsets for about three weeks, then it stopped but it took me seven months to get the benefit of the hydroxy. But I stuck with it and now I am feeling 1000 percent better. It has help mostly with fatigue headache and joint pain along with the 5 mg of prednisone that I take every day. I'm on 500 mg of hydroxy every day. so my suggestion is to stick with it if you can, and hopefully you'll get a great result. The best of luck to you, Nan

  • Thanks Nan, that's reassuring to hear, although I'm a bit disappointed it took 7 months to take effect - although not nearly as disappointed as you must have been. Still, I suppose I've felt like this (on and off) for years, so a few more months is a short time really. Thankfully I'm feeling a bit less awful on it every day, so I'll definitely stick with it. Thanks for the reassurance and the luck - I might need that! πŸ˜€

  • Hi Nurseladybird, Prayers for healing coming your way, I know it does get discouraging I was beginning to think this was my life forever, but it really has gotten much better on this medicine. I have lupus but I am not going to let it become me. Sending you all the best hugs, Nan

  • Hi and welcome.

    When I started on hydroxy I felt awful, was having more visual migraines and pick axe type headaches constantly. I considered ditching it, but I then read up on other people's experiences and now I split my dose. I take one in the morning and one in the evening. That made it much better.

    I hope you start to feel much better soon x

  • Thanks Bacardibabe, that's reassuring to hear. I'm glad you're feeling better on it now. I'm still only on one tablet/200mg a day until I go back and see the rheumetologist in March, so I'm slightly anxious this might all kick off again when the dose goes up. However, I've come this far and the migraines are wearing off, so let's hope it's onwards and upwards from here x

  • I hope you continue to feel better.

    If your dose is increased definitely try splitting it. πŸ˜€

    Xx

  • Thanks everyone for your words of encouragement and sharing your knowledge and experiences. What a great place this is? It's good to not feel alone!

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