Hey I am new to this I only got diagnosed with rheumatoid arthritis last week I was just wondering I got put on Hydroxychloroquine was wondering how everyone was finding it? I'm just a bit worried as I have been reading and told it can effect your eyes? Also wondering if it is safe to take neproxun at the same time as being on them?
Thanks 😊
Hiya Moulinr, welcome. I'm sorry you've received the diagnosis but now you have & starting treatment you'll be in a better place. Just in case it wasn't mentioned hydroxychloroquine in common with all DMARDs doesn't work straight away, it can take around 12 weeks although improvements can be noticed in the weeks leading up to then. In the meantime you do have naproxen to help ease the inflammation & pain so take those regularly as directed, they work better that way. NSAIDs are commonly prescribed alongside our other treatments though you may find some information to the contrary. That's real world information, we aren't able to live by those rules, in rheumatology anything which goes towards reducing inflammation & in turn damage is necessary. We do have regular blood tests to keep a check on how our liver, kidneys, inflammation etc is so anything awry is picked up on & can be attended to promptly. Although some may most have no issues, me included, I've always been coprescribed an NSAID & never had anything to suggest I can't. Check with your Rheumy nurses, they'll be happy to answer any questions.
Your concern about HCQ & the eyes is a valid one but needs to be in context. Retinal problems are usually only found in those who have been taking it a long time (have to say that because they may have been exceptions). Those taking it are requested we have annual eye checks even if there is no vision change. Were you asked to have a baseline test taken prior to starting it? If not you should just so it's there if it needs to be called on. The latest guideline from The Royal College of Opthalmologists suggests the prevalence of retinal toxicity following long-term use appears to be around 7.5% & depending on dose and duration of therapy can increase to 20-50% after 20 years of therapy. Risk increases for patients taking more than 5mg/ kg/day. rcophth.ac.uk/wp-content/up... Long term can be thought of as around 5 or more years I would think, but if any changes in your eyesight are noticed like anyone on any med you'd of course report them.
Many of us here have been prescribed HCQ, it was my first DMARD. If you are concerned though then again, do ask to talk it over with your Rheumy nurses, they will be happy to ease your concerns.
I hope you find it helpful being here. It's a great place particularly when newly diagnosed when everything is such a change. If you have any other concerns don't be afraid to ask, there are many of us here so someone will have had experience to call on!
Thank you so much for your response it is a daunting time when your diagnosed and I am struggling to get to terms with it there are alot of things I've been reading and I think some of it just worries me especially the eye thing as I already wear glasses and don't have perfect vision as it is but your reply has definetly helped me to understand better and they did ask me to get an eye test before starting it but being a regular I have had a recent one anyway however I will go again just to be safe. Have you noticed any other side effects of taking the medication? How long have you had RA if you don't mind me asking?
Thank you
It's completely understandable to be apprehensive when first diagnosed. You probably are but just to remind you, do keep your research to reputable sites, no Dr Google otherwise you could frighten yourself unnecessarily.
I was diagnosed in 2008 & took HCQ for the first year. I changed to methotrexate because HCQ just stopped working & I’m still on MTX. I did have some photosensitivity on HCQ, my eyes in particular were sensitive to sunshine but then I did live in a sunny country at the time so was maybe worse than if I’d have been in the UK! I also wore both glasses or contact lenses at the time & I did have to give up on contact lenses because of the dryness but that was no great problem. I did try various comfort drops to use with my lenses (kindly sent by my brother in law who is an Optometrist) but nothing helped. Sunglasses were very helpful & helped ease the headaches associated with the light. My Consultant had me have 3 monthly appointments with the Ophthalmologist at the hospital but nothing changed from the first tests done. All this said it's not necessarily something you'll have so don't worry.
Thank you so much that is definetly helpful my doctor did say about the methotrexate as well saying it is helpful do you take the tablets or the injection? I live in the UK so luckily for me we don't get sun very often 😆 I was thinking of starting contacts too but couldn't get used to the dryness of them so I just wear my glasses but I do keep to regular check ups with my optician so I will be able to keep track of it thank you so much for all the help and information it does feel like at the start you don't know where to turn or what information to read so I appreciate the help
Thank you
You're welcome. It does feel a bit like walking in treacle in the beginning, & a quick learning curve.
I'm in the UK too now, came back in 2013. I've been on MTX injections for 12 years. MTX is considered the gold standard & like most do I started on tablets. I was fine on them at the dose I was on but a new Consultant was like a new brush & sweeping clean… he decided as I needed an increase in dose he'd prescribe injections.
Don't hesitate to ask or start a new post if you have any more questions.
Hi, when I was first diagnosed I started on steroids and was told if they worked to start taking hydroxychloroquine. There was a slight delay / misunderstanding in starting the hydroxy - I was actually supposed to take them as soon as the steroids worked so that by the time I phased out the steroids the hydroxy would have kicked in - as someone says it takes a while to kick in - but I got there in the end.
Hydroxy can affect your eyes so regular eye tests are important - maybe even have a baseline test before you start. I pay for my own OCT scans - I think in theory rheumatology should do that but it doesn’t happen in my hospital so I just pay. It’s very important if you notice any changes in your vision to speak to your optometrist straight away and they will advise you what to do next. I’ve also got a thing called an Amsler Chart that I use to keep a check myself - you can download it free.
I had Naproxen for a while but stopped because it didn’t agree with me - nothing to do with the hydroxychloroquine that I take though. If you’re ever in doubt you can always ask your pharmacist.
Hi Moulinr, I was diagnosed about 20mths ago & given hydroxy & prednisole which I,m still taking but lower dose of prednisole 5mg now which works quite well. It tool longer than 12 wks for hydroxy to kick, roughly 14 wks. I had an eye test a few wks after starting treatment and just 2 wks ago went back for a check up. Optician referred me to hospital & this morning had my eyes scanned/tested there. The result was good, I do have some deposits but said not from hydroxy & I can carry on with which I,m really pleased about! I,m now under the hospital opthalmologist & they,ll moniter me again next yr very reassuring. I have blood tests every 6 mths or earlier if they pick something up. If you do notice anything wrong speak with your dr asap. I have co codomal for any pain but we are all individuals so its whatever works for you. I hope you get it under control tho & you,ll find lots of help on this site for any worries/fears you have. Good luck & try not to worry too much easier said than done tho. Wishing you a happy & peaceful christmas 
This is the official guidance for monitoring. My local high street optician knew all bout its did the annual tests. I was on it for 8 years with no problems. It took a while to kick but did help.
Hi and welcome. That is an excellent reply from nomoreheels. I agree with everything she says. I would just add that there is a thing called an Amslar chart that you could ask your rheumy or doc or optician for. It is just a card with little squares on it but you can use it each day to make sure your eyes are ok. There is a spot in the middle of it and you focus on that spot. If the lines look wavy you need to let someone know straight away. All the best
Hi thereI've been on Hydroxychloroquine 200mg daily since diagnosis in 2013. I have an eye test annually and my last test in November showed everything was fine.
Leflunomide and Aprimilast were added over the years to enable me to have an active life. I still work full time and enjoy each day at a time.
Wishing you all the best.
Owdiddoo, welcome to our unique club ( one we didn't sign up for 😉) I was put on MTX tablets and Hydroxychloroquine when first diagnosed.
One problem when I got my diagnosis was I was in shock and overwhelmed by info. It took me a few months and serious deterioration in my condition to re-present me with a specialist nurse, this time I was armed with my research questions. The nurse gave up her lunch time for me and answered all my concerns, when I apologised for taking up her time etc, she said wished more like this as it means I now know what I'm taking, why and what to look out for.
So that's my long way of saying research on dependable sites, eg NHS, Versus arthritis , this site, then ask what you need of the specialist nurse as they deal with your care plan.
Re HCQ I had my eyes checked yearly (was any way for other reasons) and inform the optician.
Now no longer on HCQ wasn't doing anything for me apparently, and now on MTX injections weekly, plodding on as well as I can.
All the best 🤗
Welcome to the gang and happy Christmas
Hello Mulnir, you got some great replies to your post. I can't comment on the medication as I'm on a different regime.As you are new to this, I would like to point you to some valuable information. Firstly NRAS. They have a vast library of information about all aspects of living with RA. You'll find most of what you need to know about medication, self management and lots of other really useful information. They also have a really good help desk with people who know what they are talking about. There's also Versus Arthritis. Worth a look at. Dr Google is mostly the worst place to look, at least to start with. There is also an app called "MyArthritis" by Ampersand. An excellent resource for everything to do with living well with RA. I wish you all the best and please stay in touch. There are so many lovely people on this forum, you'll always find someone who has experienced something similar to you.
Hi. Welcome to our club. I would recommend reading the NRAS resources which will help with questions etc that you have.
I would also recommend getting some Mental Health Support. You can self-refer/ or get your GP to refer you to IAPTS. They do a Chronic Illness Course (which I never did, but retrospectively think would have been useful). RA is life changing stuff.
Your GP may also have a ‘Social Prescribing’ Service where you can have a chat with someone who can help signpost local resources..
We are all different on here, and have diff experiences/ stories, but there is commonality of some shared experience which does help. Just so you are not alone with everything.. we just ‘know’.
It is a marathon rather than a sprint. Try not to be hard on yourself or to give yourself a hard time. Learning how to pace and rest can take a decade (or maybe that’s just me!)..
Step at a time; gently gently..
Hi I was diagnosed with RA about 7-8 years ago. I've been on Hydroxychloriquine all that time with no problems . I have been on maximum dose of 400mg a day from the start. I have my eyes checked every 6 months and had no problem at all. I think previously there have been higher doses but now they are more aware. It's worked well for me and I had Sulfasalazine added a year ago and now on a small dose of Methotrexate to stop me having Steroid injections every 6 months, which I'm happy to say has really made a difference to me.
Despite the fact that I'm covid positive just now and had to stop Methotrexate till better.
I have had more concerns taking Sulfasalazine and Methotrexate but actually I have realised that my Rheumatologist knows best what is best.
Hope your the same as me and the Hydroxychloriquine helps quickly.
I was prescribed hydroxy as well, and while I chose not to use it - I had the same worries about eye toxicity - a good rheumatologist will tell you to get a baseline eye exam by an Ophthalmologist (not a optician or optometrist). Get follow up exams. This way, your doctor can keep track of any eye changes as a result of the drug.
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