hydroxychloroquinine

[Crumble2]

I was diagnosed with rheumatoid arthritis this morning and prescribed hydroxychloroquinine. I had a long talk with the rheumatologist about side effects, which has worried me since the gp suspected RA 3 months ago. I felt a little happier - and hopeful- about taking it. Now I’m home and read the information leaflet and am seriously worried again. Has anyone any advice for me about this drug? I know you’re not medics but you are very experienced in living with both the diseases and the treatments so I thought I would ask for info on your experience.

[rmros]

Hydroxychloroquine is one of the most well tolerated drugs in our canon. You might have some gastric upset and/or headaches at first, but these all settle down over time. I also had anxiety as a side effect at first, which I think is less common.

Stephens-Johnson syndrome, which might be the one you're worried about, is very rare. It's also a risk from some anti-inflammatories and antibiotics, which we take without thinking about it. Worry about every listed potential drug side effect and you'd never take so much as a painkiller ever again.

[Crumble2 in reply to rmros]

Thank you… now I feel better. 😊

[rmros in reply to Crumble2]

Good luck with it. I found it a very good drug in the early days and although I had to step up to stronger ones I still take it as it helps enormously with fatigue.

[Boxerlady]

I've had no side effects from Hydroxychloroquin which is the mildest of the three DMARDS I take; it's obviously doing some good though, as I have had a slight increase in joint problems when I've dropped my dose too low in the past. You should have regular eye tests as a precaution but as rmros says, all medications have worrying side effects listed and if we took them too literally, we wouldn't take anything - or eat/drink anything!

[Crumble2 in reply to Boxerlady]

Thanks for your reply… it’s helps

[Fruitandnutcase]

I’ve been taking hydroxychloroquine since 2015 with no side effects.

You ought to go and have an eye test as a baseline, ask to have an OTC scan as well - I have one every year - have one even if you have to pay for it, it is worth every penny believe me - I have never been offered it by my rheumatology dept although some people are - that will give you a baseline to work from which is important.

You can also download a thing called an Amsler chart, it is free and the instructions are self explanatory amslergrid.org/AmslerGrid.pdf and keep a check on your vision yourself in between tests.

[Crumble2 in reply to Fruitandnutcase]

Thank you, that’s really helpful. I’ll look at the chart too.

[Brychni]

Zero side effects

[Crumble2 in reply to Brychni]

Good to know 😊 thanks

[AgedCrone]

Your rheumatologist will have chosen the DMard that from his/her experience believes is the right one for you …so put side effects out of your mind & decide side effects are for other people. To get listed as a side effect only takes very few people to complainin.

RA meds are not like taking anti biotics that can show progress in a week…..it will be more like a few months before you wake up one morning & think “something is working” .

So get on with your life looking forward to success……& listen to those who did have side effects…but also to those who only had a few issues with a couple of RA meds ..then got on well ….like most of us.

[Crumble2 in reply to AgedCrone]

I’m trying- spring cleaning the living room which I like doing. I’m less worried than I was. Thanks

[AgedCrone in reply to Crumble2]

I couldn’t believe it when I was told I had RA when I thought was just overdoing things playing tennis 3 hrs a day in my late 50’s…but here I am jn my 80’s & although I can’t play tennis I CAN do most of what I want to do.

So, don’t overdo things - but don’t miss dusting under the sofa!

[helixhelix]

took it for 8 years with no problems, just helped control symptoms. The risks to eyes are very, very small especially during first 5 years on max dose.

The risks of uncontrolled RA are much higher.

[Crumble2 in reply to helixhelix]

Thank you, a reassuring reply 😊

[dancersize2]

My rheumatologist had me on methotextrate for PMR when she decided I now had RA instead. I don't think it does anything for me even after 6 years. How does hydoxychloroquine help?

[helixhelix in reply to dancersize2]

It was actually mainly developed as an anti-malarial so works in a different way to methotrexate, blocking the development od a cellular protein that stimulates inflammation.

It’s very slow to work, and best used for early stage RA or in later stages used in combination with other drugs.

[Tottie10]

There's always one. I started to develop an alarming rash on my chest gradually spreading up my neck and to my torso after about 2 weeks. I also get a nasty skin reaction from the anti malarial, mefloquine, so I guess the two might be linked. Plenty of other DMARDS and biologics that I can take to keep things under control. Good luck.

[Mama-K]

I was on this when first diagnosed, but had to progress quickly to biologics as severe. I didn’t experience any problems. I was just so grateful that I was heard and my pain resolved

[Crumble2 in reply to Mama-K]

So pleased you found a resolution to the pain.

[Rubygirl08]

I was originally on it when diagnosed last July together with methotrexate. I struggled with gastro side effects, which didn't surprise me as my stomach/bowel and medication have an awkward relationship at the best of times!I found I was gaining weight and inches around my belly to the point that my clothes weren't fitting even going up 2 sizes - waist only. The pain and bloating was awful even after 6 months of being on it. I came off hydroxy in the new year and within days felt much better. My original clothes fit again too now.

I'm just on methotrexate and folic acid at the moment.

As others have said, don't worry about the side effects, these things either suit or not.

Hope your pain eases up soon x

[HappykindaGal]

I’ve been taking it since 2002 for lupus without a single side effect. It’s one of the milder drugs and has been around for decades. If you read the side effects on paracetamol you wouldn’t touch those with a barge pole either. You’ll be just fine

[Crumble2 in reply to HappykindaGal]

Thank you ☺️

[Kati66]

Hi Crumble,

I’ve been on hydroxychloroquine since 2023 and had no side effects at all. Optician agreed to check my eyes every year though to make sure no damage is being done.

It is worrying when you are about to take a new medication but it might really help you 🤞🏻🤞🏻🤞🏻

[Crumble2 in reply to Kati66]

Thank you - I’m feeling more relaxed about it now.

[ABwn]

Have been on hydroxychloroquine and methotrexate since 2002 . Tolerating both.

[Crumble2 in reply to ABwn]

Thank you. 😊

[Runningupthathill13]

Hi, I started on hydroxychloroquine In 2018 as a first option and the only side effect I noticed was itchy skin every now and then but that’s completely stopped. I think it is given as a first option I was on that for a yr before being put on methotrexate also as inflammation and rheumatoid factor was getting higher and higher, as everyone here has said try not to worry it helped me tremendously and I’m terrible at worrying about what I’m taking but no bad side effects luckily and if you do have problems speak to your doctor or rheumatologist x

[Crumble2 in reply to Runningupthathill13]

Thank you ☺️

[Fra22-57]

I take this among other rheumatoid drugs.This was the game changer for me even though I was on a biologic.It helped more.I am not saying I am pain free but none of the drugs have made me completely pain free.Many shun away from drugs but rheumatoid arthritis ,if not controlled will get worse.These drugs dampen down the disease making it more comfortable.I have an eye test every year at the hospital.I was told by others it could cause dry eyes but age can cause that too.You can always try the drug and see if it does help

[Crumble2 in reply to Fra22-57]

Thanks for the reassurance.

[Sebastian247]

I've been on it for a week. So far I've only had minor tummy upset / loose bowels, so mild side effects compared to previous drugs I've been on. My understanding is that Hydroxychloroquine takes longer than some other drugs to take effect, just to bear that in mind. Best wishes. Seb.

[Crumble2 in reply to Sebastian247]

Thank you ☺️

[JenniferW]

It upset my digestion with wind and looseish bowels , but it eased off after the first six weeks and I helped myself a lot by swapping to a more solid breakfast. The bit in the leaflet about taking it with milk didn't work for me, I had to swap from weetabix to toast for a bit more ballast

[Crumble2 in reply to JenniferW]

Thanks ☺️

[Lydiascafe]

I was on this ( plaquenil) for years and was great until I got an invisible itchy arm which can be caused by this drug. It was unbearable. Thankfully my rheumatologist knew this and took me off it

[Crumble2 in reply to Lydiascafe]

I’ll watch out for that as I tend to have itchy skin anyway. Thanks

[james87]

I’ve been taking it for a year and found it’s alright. Sometimes I have light headed moments and low blood sugars but not sure if it’s that or the Losartan I’m taking. Raynauds had improved massively though.

[Crumble2 in reply to james87]

Thanks. Great that you’re feeling better 😊

[tyncwmmarchhywel]

Sorry to hear your news , It was one of my first meds ww .but made my eyes sore and did not do much for r a .Good luck

[artc1]

I was diagnosed in September 2024 with RA and have been on Hydroxychloroquine (Plaquenil) continuously with no side effects since then. I had the eye test to achieve a baseline as soon as I was diagnosed as others have suggested – a concern since I am a visual artist. I also have monthly labs ordered by my rheumatologist. In addition to the Hydroxychloroquine, I have tried adding Methotrexate, Sulfasalazine, and Leflunomide, none of which worked for me due to side effects, though nothing life-threatening. I am seeing my rheumatologist in May and will likely start with biologics. For now, my pain is at a one compared to a ten when I was diagnosed, so the Hydroxychloroquine has been nothing but beneficial. I will still need to find a second medication - apparently, it is common to use a second DMARD for treatment after initially starting on one for the best outcome. It's very common to try at least several DMARDS before one finds a combination that works for them – everyone reacts differently so try to be patient as you try each one. You'll get there! Best of luck to you.

[Andiemk]

I’ve been on Hydroxychloroquine for several years. Works really well for my RA. Just have your eyes checked regularly.

[Pxmnhc]

I was prescribed Hydroxychloroquine and took for 11 years. It is imperative to have yearly eye exams. My optometrist noticed visual changes and reported to the rheumatologist suggested a different medication. My rheumatologist reduced the dosage. The next year at the eye exam my optometrist was shocked that I was still on the medication. He noted further damage to the retina. I was referred to a retina specialist who told me I had bullseye effects. So now I see the retina specialist twice a year. He stated the damage has not gotten any worse. He said I was on the medication too long and likely the dosage was too high given my weight. I'm grateful for being stable now. Right now my RA is controlled by biologic Orencia every 4 weeks but infusion.

[LucyZuma]

hi I got diagnosed about 5 6 years ago. Hydroxychloroquine is the only RA drug I have not had a reaction to. Methotrexate affected my liver, humira caused rashes and bloody phlegm, enbrel did not work after 2 months I had a bad flare. Others I took were too expensive. The dr just added leflumondine. I’m not sure how it will work out. I think the hydroxychloroquine has lowered my shut blood cell count somewhat. The dr is watching. Otherwise I have no issues with it. Good luck. I have been on it for 2 years. I have no eye issues except cataracts. It’s scary. I try to have eyes examined every year. I take a pill and a half every day of hydroxychloroquine. 300 mg Sometimes I think the cure is worse than the disease.

[Reeceregan]

I’ve been taking H for 5 years, maximum dose, no side effects. Just have regular checks on your eyes, but with an eye specialist not an optometrist. They will do more detailed tests. It’s worth it.

[Rainyda]

I've been on Hydroxy for over 30 yrs. A couple years after being diagnosed with SEVERE R/A. At that time Hydroxy was the only drug from many tried that eased my condition after 2 long painful yrs of daily pain/suffering. Had biologic Orancia added a few yrs ago due to med. flare-ups. I have had no problems with it. I get my eyes checked twice a year. I still get flareups/pain, but haven't been in a severe condition. Don't worry about the risks....all meds have risks. I hope it works for you. Best of luck to you.

[ImSonia]

It's a fantastic drug - and well worth a go, if prescribed. I know the side effects sound scary - but try it - if you do get side effects - inform your Specialist and let them see what they can do.

Sadly for me, it did not work out well. Literally in 1 weeks I noticed an incredible difference. I have Palindromic Rheumatism too, and was in bed, in pure agony for most of the week. Suddenly I was up, and moving, and going out, and of course, lost weight, and it was crazy good. Honestly, I felt amazing! ..... And then day 13 hit....

I went to visit a very sick friend in Hospital. I have I.B.S. so didn't think too much into it. Sadly - for the entire visit, I was running back and forth to the bathroom, with explosive Diarrhea (3 underwear changes needed. I gobbled down Immodium, and it stopped. .... long enough for me to visit another friend.

Walking home several hours later - at night across my local park (thank goodness) it came back, and let's just say - a full on, full body, and clothing, cleanup mission was needed once I got home. It was not fun. I actually thought I'd caught Gastroenteritis. I hadn't, as it turned out.

The next day, I took the meds again, not thinking, and I was fine until about 2pm - and it was basically downhill from there - and not once did I think it was the Hyrdro.... so I kept taking it - and kept getting worse. I got very bad bloat (went up 3 trouser sizes and it was getting tighter because I was fully inflammed, and bloated in my guts) and pain, and gut issues, and basically - I was in a right state... But - the Arthritis pain was better. ... so I kept taking the Hydro.

Sadly - because I didn't tie the 2 in together - I took it for the ongoing weeks - as instructed in the first appointment - and didn't tell anyone of the issues, just thinking it was a really bad spell of I.B.S. And so by the time I rang the Rheumo (I didn't have a GP at the time, as my previous practice ended), out of pain and desperation.... and that's when my Specialist nearly had heart failure at me! LOL.

They took me off of that, and put me on Sulfasalazine. That didn't agree with me either.

It's taken nearly a year to recover - I'd say a good 7 months until I felt "free" of the bloat and gut pain. I don't think I should have been taken off of one, let a week pass, and start the other - I don't think it helped, as it started things off again - but that's what they prescribed, and now have stopped the Sulfasalzine, and the Hydro and told me that as I reacted so badly, there is nothing more that can be done for me... which I'm not happy with either.

My issue was so rare - so please don't read anything too much into it. But why I'm saying this - is to point out that - if you have symtoms that flare up, within 2 weeks - and they seem to get worse, not better - PLEASE learn from my mistake, and contact your Specialist, and let them know. I do believe that if I'd stopped when I first started getting really bad - like at week 3, I'd have recovered a whole lot quicker. As it happened - I took it for nearly 10 weeks, before the light in my one functioning Brain Cell, apparently decided to fire up and connect the dots! I felt so silly, as it all seemed so obvious while my Specialist freaked out at me. LOL.

Give it a go, monitor your health, and see what happens. .... Hoping so much, that it is the miracle cure, you are wishing for.

[Chockyuk]

I think the best way you can alleviate some of your worries is to think all medications have side effects. Methotrexate is usually the DMARD most have worries about, and as others have mentioned, apart from being vigilant with the eyes (you should be referred for a special eye exam once a year) Hydroxy is one of the milder ones. It was working fine for me, but in the end it gave me very bad tummy problems and I ended up in A&E, so I was taken off it and put on another DMARD, but that was just me, others don’t have any side effects at all. I have a friend who has Lupus and has been on it for many years and she has no side effects from it at all.

It’s not easy, but try and put your worries aside and concentrate on the positives it may do for you. If you’re still uneasy, a chat with your consultant or specialist nurse may help to reassure you. 😊

[Happy5]

First sorry you're joining the club no-one wants to. It's all a bit overwhelming when first told about your diagnosis took me about 6 months to get my head round it and start treatment which included Hydroxychloroquine. Information leaflets are like reading Armageddon because they have to cover everything possible, and present worse case scenario. I always read the basics of my leaflets but avoid the list of extreme symptoms.

This medication has along history so all bases are covered with it, your RA team should have provided an advice line contact number if you have any concerns. They know their stuff keep in mind doctors diagnose and prescribe while RA specialist nurses look after your care plan.

In my case I was taken off as wasn't helping, but one thing I do know have to try what's offered see what works for us.

All the best.

[garden_999]

Hi! I have been on hydro since 2015. Started at 400mg now 150mg a day. Hoping to hit even less. No issue except initial headaches. I have my eyes test every 6 months. It has been very effective, joints are good. Good luck.