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LUPUS UK
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Hydroxychloroquine

I have been put on Hydroxychloroquine today, can anyone give me any advise on it please.

My consultant said it's a "safe drug"

Thank-you.

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I have been on Hydroxychloroquine for about 15 months now and I've never really had an issue with it.

It worked amazingly well in the beginning but unfortunately that didn't last long so we're still trying to find the correct dose for me.

The main thing is that you'll need to have yearly eye tests because long term use can affect your eyes.

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Thank-you for replying. I'm on a 3 month trial at the minute.

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Hi i have been on this medication for 20 years no problems.You will need to get your eyes checked out on a yearly basics.

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Thank-you. X

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Hi Tinkerjack1912 I agree with Granny4. I've taken it for 16 years and it's the safer (and no secondary effects) pill for Lupus I've had so far. I take the maximum dose every day (400mg). As previously said, get your annual eye check. I've never had any problem with my eyes, but it's important to have them checked.

It's so safe and I've felt so well with it that I kept taking it during pregnancy.

I had to stop it a couple of times in the past for a short period because I couldn't get it anywhere, and the sudden lack of it made me feel very dizzy, with nauseas, headache, cold sweat, weak. That went off as soon as I retook the treatment.

Best wishes,

Dalila

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Thank-you

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Your welcome. One more thing that I almost forgot, try to take it at the same time every day and not with empty stomach as it can bother a little; this way you can help prevent stomach upset.

:)

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That's great thank-you. I've been taken it straight after breakfast which I'm forcing myself to eat. So far no side effects so fingers crossed, I just hope it works. X

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That's excellent! Positive mind, that helps tons. I assure you this.

I know what you mean about forcing yourself to eat. It happens to me a lot. The amount of pills that we have to take doesn't help much.

Take care :) X

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Yep they make you feel like your not hungry but you know that you need to eat because of all the meds it's a vicious circle. You take care to. Xx

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Yes, it seems to be well tolerated by most people with few side-effects. Like some others, at first, I found it irritated my stomach and I got heartburn, but this went away after a few weeks. Some people here have found that a particular brand is better for them than others, but I'd better leave that to them to explain.

Overall, I'd say that although it seemed like a big deal when I started on it, after a year on 400mg a day, it's caused me no trouble and my initial symptoms have definitely improved x

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Thank-you that's good to hear. X

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I've had no side effects at all did not see much improvement though you will need regular eye tests though as far as I'm aware it's very well tolerated deist of luck

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Thank-you

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WONDER drug for me! Good luck :-)

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Thank-you.

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Worked well for me and no tummy issues from it.

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Thank-you

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Hi Can't live without it at the moment, I been on it for 2 1/2 years. At first my hair was coming out faster than I liked and freaked me out, I have a thick hair and it thinned a little, then settled. I tend to take it with food or a glass of milk to coat my stomach & to he!p with reflux. It take time to built up in your system to be effective and when I was asked to reduce it in winter I found I was unwell and had to i crease it again, now maintain 200mg per day. It took a few months again to feel better again after reducing for a month.

Also, Ido annual eye check up, I hope you find it helps you... ML

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It will keep your hair from falling out 😍

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Thanks

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It may takes up to 12weeks before you feel any effect. In my case I had a flare up in the 2nd week I was put on it. Got the does changed for one month. Noe back on 200mg and been 4 months and now it feels like it started to have some control. I have read it takes up to a year taking it before it has full effect.

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Thank-you. I'm on 400mg daily for 3 months to see if it helps. Fingers crossed, I'm fed up feeling like this. X

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Yes similar, I found the one month power up very useful. Been back down on 200mg for a month now and seems ok. Will have my first review next week. Hope I am under control :-)

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I hope it all goes well for you. πŸ™‚

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Hi. This med is taken by most lupus patients I know. Many have been on it for years. I take a suppressant med that protects my kidneys. Plaquinil mediates more than suppresses. I have had some stomach issues but otherwise things have been fine. Good luck to you. Yearly vision checks very important. Leigh

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Thank-you x

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Hi there

I have been on Hydroxy for 15 years now and have not had a major issues with it. It worked on it's own for 12 years but then stopped being as effective. I am now on lefludomide but I still take a daily dose of 400mg Hydroxy.

I have noticed people saying that you need to get 12 monthly eye tests - my consultant told me to get 6 monthly eye tests, which I do.

Good luck, hope you feel better soon.

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Thank-you. X

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The eye test issue seems to have been relaxed more recently as more evidence comes to light. At least that's what the optician told me as he referenced it in 'his manual'.

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Thank-you

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Going for my first appointment Monday because of High ANA and Rash

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Good luck. I hope you get some help.

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hello Tinkerjack1912 , ive taken hydroxy for 15 years, on 200 daily and now 200 one day and 400 the next and so on as 400 daily i had persistent headache. it does seem to help alot of people with lupus. good luck as anything is worth a try :) x

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Thank-you. It is definitely worth a try, if it works then great, if not we're back to square one. X

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Hello, I've been taking it since October 2016. Found I noticed a slight difference in muscle and joint pain after about 4 wks, by 12 wks I felt less tired and fevers had reduced. I had terrible hair loss caused by lupus which has improved since taking the Hydroxychloroquine but remains a problem. By 12 wks joint and muscle pain had reduced to extent where I could resume exercise and slept better. I had no side effects.

I just wanted to let you know what happened after I did my 3 month trial. Dr felt because I'd had a good result I should reduce to 200mg, I was very reluctant to do this so tried not to but my GP would only prescribe what Rheumatologist said. After 3 wks of reduced dose I had a huge flare up where I lost 2 stone and ended up in hospital on steroids. Took 8 wks to persuade Rheumatologist to increase dose again. I've now been on 400mg for 5 months and feel good. It took longer to feel better the second time round.

Just wanted to warn you in case this happens to you. If you feel it's working we'll try to stick with same dose or gradually titrate down. Not all Rheumatologists reduce dose this early, but just in case!

For me it's been a wonder drug that has changed my life. After 4 yrs of feeling terrible and giving up all aspects of my work and social life it's given me hope of rebuilding what I lost. Rheumatologist has agreed to let me continue on this dose for 3 yrs and I'm hopeful I'll make further improvements.

Take care x

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Thank-you I hope it works for me. Xx

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Hi, like many others I have been on Hydroxy for 17 years and never had an issue. For many years I was on 200 a day I'm now on 400. As most have mentioned the eye test is extremely important, one reassuring point is, last time I saw my Rheumatologist she said that any eye problems caused by Hydroxy is reversible, not sure if anyone else has been told that .

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Thank-you. You have all been do kind and helpful. X

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Quite the reverse actually. Moorfields eye hospital said it is unlikely I would notice any changes to my vision before the damage is done and it is not reversible, in fact once the changes to the retina start they worsen quite quickly! That is why you need to get properly checked and opticians can't do that - get a referral to an eye hospital.

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That's interesting and slightly worrying that the Rheumatologist should say that to me. I have mainly gone to a opticians but did have referral to eye clinic where they noticed deposits of calcium however it was the opticians that picked this up. Maybe it's time for me to go to the eye clinic, not much is more precious than your sight after all

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It was a shock to me when I was told any damage was irreversible. It is easy to assume that if you stop taking a drug then all will be well. Rheumatologists cant be experts in everything. My consultant definitely pays attention to what Moorfields tell him. I did have to stop taking the chloroquine for a bit when there was some concern about my eyes, but thankfully they decided the retinal damage was age related and not being caused by the chloroquine and I could go back on it. I had a Lupus flare in the meantime so I was very happy about that!

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I've been taking it for 24 yrs. 400 a day (standard dosing). No problems, but I can tell in a few days if I stop. Get your eyes checked. As for me, makes thing manageable.

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Great thank-you. I'm sure we should rattle with all the medication we have to take. X

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The purpose of monitoring your eyes is to be able to catch deposits on your retina at a early stage (if this were to happen).... then medication can be stopped before any irreversible damage occurs. From my research the standard 400mgs a day is safe, seeing your ophthalmologist is a precaution, as everyone is different. Higher doses could be problematic. My ophthalmologist is a retina specialist.

Just wanted to share this info.

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Lots of people have said to get your eyes checked. I would like to add that this should be at an eye hospital - the retina clinic. I went to opticians for years and even paid for fancy scans but to be honest when I ended up at the hospital as I was having cataracts removed, they sent me to the retina clinic and I realised that is here I should have gone in the first place. I've been on chloroquine for years now and my eyes are fine but the clinic have said they will continue to monitor me from now on. if you stay on the meds ( no need to worry yet), then ask your GP about a referral in the future

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i have be on hydroxy for several years and i never ever felt good on it. in fact it made me feel worse. but then apparently i don't have lupus after 5 years of constantly being diagnosed with it. to say that rhrumatology is the ugly sister of medicine is an understatement

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Oh dear that's not helpful is it. I hope you get sorted soon.

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It is a safe drug. You do need an eye exam every year. A side effect is eye damage. I have been taking since 1995 and have never had issues at all.

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Same here was on it for 20yrs..

No issue at all.. just regular annual eye check ups. Hope all go's well for you.

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Thank-you it has made a difference for sure.

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