Hydroxychloroquine

[Damamy]

I am not only new here I am also recently diagnosed with RA (1 week ago). I was put on this tablet to take twice a day and sent home with a leaflet after blood tests and X-rays. Anyway I called the RA nurse yesterday as I have had really itchy sore eyes, general feeling of being itchy all over but no rash, seriously excessive sweating (multiple clothing changes) and a headache. Has anyone else experienced this or something similar? Nurse told me to stop tablets for a week and restart them and if symptoms returned call them back.

[Shalf]

Hi Damamy and welcome. Hydroxychloroquine was the first drug I was given too and like you, I was sent home with leaflets containing information about other DMARDS. I know hydroxy is used in the prevention and treatment of malaria. To be quite honest with you, I never found out or really asked what role it played in RA as I was ( at the time) in complete shock at what the Rheumy was telling me. I cannot recall having an itchy body or eyes with it and it was very soon after the news ( approx 1 week) methotrexate was added. There was more information given about that drug than hydroxy because of the side effects ( as I was told by Rheumy nurse). Perhaps a silly question but I wonder if the sweating/headaches are related to anxiety? I was certainly very anxious and stressed at my diagnosis which caused sleep disturbance, sweats and panic attacks.

If you feel it's not related to this then I would do as the nurse said. They will likely book you an appointment soon if not already done so to discuss your health plan. If none of that has been arranged, might be a good idea to see your GP. He/She can contact Rheumatology dept on the day if need be.

Everyone is supportive and helpful on here. Most of all, we understand how each other feels.

Stay in touch - Take care

Suzie x

[phil_54]

Hi and welcome, Hydroxy is an immune supressent it helps to slow down your immune system because it is not only killing off bad cells it is also attacking the good cells therefore reducing your bodys natural defences against infections etc etc, sore or irritable eyes are a significant side affect from this and it can present itself similar to Sjorgrens syndrome.

Shalf is quite right you can make many friends on here and they are the people who really understand your concerns about anything related to this horrendous condition so please keep posting.

I wish you all the luck in the world

[sylvi]

I take a antihistamine every morning with my meds,i don't know which drug causes it as i am on so many. I take hydroxy. and i don't think i have suffered from that much itching though.I would get some antihistamine tablets though.xxxxx

[Caza]

Hi 👋, I’ve been on hydroxychoroquine now for 6yrs. I was told to take one a day for two weeks & then two a day. I did have an itchy rash for a few wks & then it settled down. I have become more sun sensitive so watch out for that. I was told to have an eye test before starting on them & then every 9-12 months. Because I’ve been on them for a long time I’m to have my eyes checked at the hospital. They’ve worked well for me so far. Welcome to our club but sorry 😐 that you’ve had to join.

[helixhelix]

If you look at the leaflet that came in the box with the pills you'll probably find that it lists itching etc as a common side effect (it does with my brand, but sometimes different brands have slightly different leaflets). So I'd follow nurse's advice and hopefully it was a temporary adjustment effect and all will be fine from now on.

[Damamy in reply to helixhelix]

All seems to be settling now that I’ve stopped taking them. X

[Ssmart]

Hi, I am on Hydroxychloroquine alone also, I’ve been taking it for approx 4 months now, and I have to say my inflammation and swelling of joints is so far significantly reduced, I cannot tell either it’s just a quiet period of RA or the warm weather or the medication as yet I would say it’s too early for me to tell.

I have not had any itching but last few weeks eyes are very dry when I wake up, not sure why.

As a previous poster mentioned, it has made me more sun sensitive also.... I seem to get prickly pins and needles type feelings in the sun and burn more easily.

I hope you get some relief from your meds soon when you restart xx

[Damamy in reply to Ssmart]

Thanks seems to be settling down now that I’ve stopped taking them. X

[nomoreheels in reply to Ssmart]

Dry, scratchy eyes was a side effect I had on HCQ Ssmart, as well as light sensitivity. Check with your Rheumy nurse but I was advised to use comfort drops for the dryness. I also wore contact lenses at the time which I eventually gave up on for extra comfort.

[Ssmart in reply to nomoreheels]

Oh thank you, I wondered if it could be the medicine, I will indeed speak to my rhumy or his nurse - thanks again all the best to you x

[nomoreheels in reply to Ssmart]

You're welcome. I also lived in sunglasses (I wore/wear Ray-Bans but any other good quality lens, 100% UV protection, would do) which I would definitely recommend with it being such glorious weather at the mo, soooo bright!

[nomoreheels]

Hiya & welcome Damamy. I'm sorry you've a received the diagnosis but hope being here will help you through the early stages, & beyond.

Hydroxychloroquine was the first DMARD I was prescribed back in 2008 when I was diagnose seropositive. I stayed on it around a year at 200mg twice daily but it unfortunately became less effective which was when methotrexate was added. The symptoms you describe are known, they're listed as common, & whilst I didn't have a rash I did have light sensitivity (eyes) for which I wore sunglasses as without them I had itchy weeping eyes & bad headaches. As it was working I was willing to persevere with it but once MTX had started working my Consultant decided to withdraw the HCQ. I remain on MTX, 9 years now, & over the years have tried double therapy with both sulfasalazine & leflunomide but now just on monotherapy at 20mg injections.

It's good you reported your symptoms & received advice from your Rheumy nurse. I guess all you can do is see if your symptoms subside for the week you halt HCQ & report back to her if they do start again when you restart it. Do be aware though that in common with MTX HCQ can cause sun sensitivity so care should be taken in the sun whilever you're taking it. Increase the factor sun cream & cover up in lightweight cotton clothing if you start to have a reaction.

You don't mention but were you told it's recommended you have a baseline eye test when you start HCQ & annually as long as you continue on it? This is due to a very rare side effect which can cause retinopathy, usually only after you've been on it a long time & at full dose so please don't think this is what you're experiencing.

It's a bind I know but DMARDs, in common with all meds, do come with possible side effects, more so usually as they're quite strong meds. Don't worry though, there will be something that helps your RD without side effects, or maybe more tolerable ones, even if you've to try a few before you settle on one. The important thing is to get the RD under control, remember though that DMARDs don't work instantly like paracetamol, you'll need to give them anything up to (or beyond) 12 weeks, though you should notice improvements in the weeks before.

If there's anything else we can help with just ask, if we have experience we'll share it. This might be helpful extra reading for the mo patient.info/medicine/hydro... & maybe the NRAS site would too nras.org.uk 😊

[Damamy in reply to nomoreheels]

Thanks, I’ve been reading up on everything but it’s a lot to take in. Everything seems to be settling now that I’ve stopped them so will see what happens when I restart them next week. X

[nomoreheels in reply to Damamy]

It is a lot to take in at the beginning that's true. Just take it step by step & don't overload your brain or it'll mangle it! Try to keep to reputable sites, NRAS, ARUK, Patient & NHS Choices & of course here as & when you need any info. If when you restart your HCQ next week your symptoms return ask if a prescription antihistamine would be worth trying, can't harm to ask.

[Damamy]

Thanks, things seem to be settling down now that I’ve stopped taking it. I didn’t know about the increased sun sensitivity but I usually use a high factor sun cream as I tend to burn very easily. Xx

[Hidden]

All great advice above, can’t add much but yes had itchy rash all over chest with it, subsided after 6 weeks with anti histamines. Rheumatology unconcerned. Had it as add in to MTX, came off as kept me awake and made me feel queasy all week ( as opposed to just 3/4 days on MTX lol!) worried about eye thing too x

[Damamy]

Thanks, yeah I had bouts of feeling sick but put that down to the other medication that I’m on.

[Hidden]

Me too cos it’s supposed to be milder one but noticed difference when I came off. MTX always made me feel sick anyway.

[juneann]

Taken Hydroxy every day for the last fourteen years, but had other drugs added since.

[Damamy]

Only been on nras so far and downloaded some information booklets. I’m just taking it slowly at the moment prob still in denial. It just seems to be one thing after another after another. Had weight loss surgery 2016 to manage another health problem and have literally spent the last 2.5 years at hospital and doctors appointments getting told each time there is something else wrong with me. It feels like it’s never ending 😱