Worried about Medication Hydroxychloroquine

[wakeham]

Medication for RA Hydroxychloroquine I have been taking these tablets for nearly 3yrs I now have cataracts in both eyes and syrogens disease!! Has anyone else had a problem with this drug please l concerned about taking it. Thank you in anticipation .wakeham

[Lolabridge]

Hello. It’s not a drug that I take but I do know that it’s important to have regular eye check ups with it. I’m sorry you have developed cataracts but it may not be the fault of the hydroxy. I had them in both eyes at age 55 which was ten years before I was diagnosed with R.A. and taking no drugs at all for anything!

All drugs have side effects, even aspirin and paracetamol. The steroids I have had to take for two years certainly do.

I think the Sjorgrens may be due to the RA not the hydroxy. But if the hydroxy is managing your other RA symptoms that’s good. If not, and you are suffering a lot of pain, then do contact your Rheumy for a medication review.

Good luck.

[wakeham in reply to Lolabridge]

Thank you for your help lolabridge.

[cass24]

I've only recently started taking hydroxy myself, and having had some problems with my eyes in the past, I did quite a bit of research before agreeing to give it a try.

From what I understand, and indeed, was confirmed by both my opthalmic consultant and my rheumatologist, the (potential) issues caused by hydroxy are quite specific and generally only occur with much longer-term use.

As Lolabridge has mentioned, unfortunately cataracts can simply be part of the ageing process (I certainly have them myself) and as my optician recently pointed out, many people have them without even being aware of it, which is (possibly) one reason why those of us having more regular eye tests (which, as I am sure you are aware, is recommended whilst taking hydroxy) get to know about them sooner.

I can't comment on the Sjorgens but at least from all the research I've done, I'd personally think it's quite unlikely that the hydroxy has caused your cataracts although of course if you do have any concerns then maybe chatting with your rheumatologist and/or eye specialists might offer some reassurance?

I really do sympathise though... anything that has even the remotest chance of affecting our eyesight is pretty scary stuff isn't it? x

[wakeham in reply to cass24]

Thank you for your help cass24 the problem that I’m trying to cope with is November had eye test and no mention that the Cataracts had advanced! Then three weeks ago hospital optical clinic tell me I need cataracts in both eyes removed SAP,but I’m trying to stay positive.

With regards wakeham.

[Fruitandnutcase]

I’ve taken hydroxychloroquine for five years - 200mg a day. The dose is relative to your weight and there is some sort of formula as to what it should be.

No problems with my eyes. I have an eye test and I pay for an OCT scan of the inside of my eye every year which I take t my rheumy appointment and have scanned onto my records and to be honest I’ve never worried about the hydroxychloroquine.

Speak to your optician about it. I’m not a doctor but I very, very much doubt it will have caused your cataracts or Sjorgens.

You need to read up what the symptoms are if the drug is going to affect your eyes and if you get any of them - blurring or loss of your central vision stop the hydroxychloroquine right away and contact whoever prescribed it right away.

You can also download a thing called an Amsler Chart and use that to check for any distortion of your vision. Problems are really only likely to happen if you are on a very high dose of hydroxychloroquine.

[wakeham in reply to Fruitandnutcase]

Thank you for your help Fruitandnutcase, I have been on Hydroxychloroquine for four years 400mg I must be heavy than you I think!

Reading the right up on Hydroxychloroquine it can causes problems behind the eyes! Which can be serious I think, but I’m staying positive.

Regards wakeham

[Fruitandnutcase in reply to wakeham]

There’s a formula for prescribing according to weight. We have a friend whose GP increased her dose from 200mg her consultant had prescribed to 400mgI told her that it might not be a good idea, she contacted her hospital consultant who was horrified that her GP had done that and reduced it immediately plus the consultant contacted her GP to point out that the hydroxychloroquine ought not to have been increased.

Have to say I have never heard of any9ne taking 600mg a day. That seems a lot.

For treatment of arthritis:

Adults—At first, 400 to 600 milligrams (mg) taken as a single dose or in two divided doses once a day. Then, 200 to 400 mg taken as a single dose or in two divided doses once a day. Your doctor may adjust your dose if needed. However, dose is usually not more than 600 mg or 6.5 mg per kilogram (kg) of body weight per day, whichever is lower.

Children—Use and dose must be determined by your doctor.

[Hidden]

Your RA specialist should have been getting you to see an eye specialist every year to check your eyes. What dosage are you on?. I’m on 200mg a day which is the “safe” amount apparently where your eyes are concerned. You need to speak to your RA person . I have been on it nearly 4 years now have had eyes thoroughly checked each year. 🙂

[wakeham in reply to Hidden]

Hi sylviaMA thank you for your help yes I also had regular checks, November Optician didn’t say my cataracts had advanced! But when I went to hospital for my check up September he said both eyes need cataracts removed ASP. So it made me wonder!

With regards Wakeham

[Fruitandnutcase in reply to wakeham]

It could be that your vision is still at a good enough level and that you don’t meet the NHS levels for needing to have the operation done or else it could be that your cataracts have just suddenly got worse between November and September.

Think there are huge waiting lists now, we’ve got friends who’ve ended up having theirs done privately because of that.

[KittyJ]

I’ve been on this for 25+ years with no problems with my eyes. I wouldn’t be concerned about it as cataracts form on the lens of the eye and hydroxy retinopathy affects the retina and is very rare. Different areas of the eye. Your optician should have reassured you about this but I hope this info lessens your concern 😊

[wakeham in reply to KittyJ]

Yes it helps KittyJ thank you, you have done well to be on Hydroxychloroquine for 25 years because it’s not an easy medication to take I feel.

Regards Wakeham

[nomoreheels]

Hiya Wakeham. As far as I know cataracts & hydroxychloroquine aren't related. It is unfortunately most often age related as you'll no doubt be aware but it is sensible to consider if there could be other reasons.

I don't have thyroid problems so this is not from personal experience but there is a connection with both cataracts & Sjögren's. Unfortunately autoimmune diseases do have a tendency to group together. Going back 8 years you were told you had cataracts about 18 months prior, so it's looking less likely they could be attributed to HCQ given you've only been taking it 3 years, though the person to ask is your Rheumy if you're in any doubt. I would be thinking there's more connection with hypothyroidism, something to take up with your Endocrinologist, see what his/her thoughts are.

Just as an aside, my next door neighbour who's 70, had a cataract removed in June & ummed & ahed for a good few weeks before she committed as she was really unsure whether it was the right thing to do for her. She has just had the other eye done about 3 weeks ago & is so pleased she did.

[helixhelix in reply to nomoreheels]

Just curious, but why wouldn’t one get cataracts done? I only have early signs, but certainly intend to get it done as soon as it becomes necessary!

Agree with everyone else, I doubt your problems are related to hydroxy.

[nomoreheels in reply to helixhelix]

I think she was simply frightened at the thought of it. She'd had 3 telephone consultations, reading between the lines 2 were for reassurance.

[wakeham in reply to nomoreheels]

Thank you for your help nomoreheels everything gets so involved when you have RA and thyroid problems. It was strange as soon as RA was diagnosed my Endocrinologist dropped me!! He said that the rheumatologist can take over now!! Not so good, but I’m trying to work my way through it .

With regards Wakeham

[Pulfs]

I've been on hydrochloquine for over 20yrs,had cataracts done 10yrs ago don't know if it was related. Go to hospital each year to eye clinic for retina scan photos plus optician does thorough eye checks. Make sure you have eyes checked yearly and i also have an amsler chart at home to make sure eyes are not seeing wavy lines,got it from my optimalic tester.

[wakeham in reply to Pulfs]

Thank you for your help Pulfs yes I do the same but only been on Hydroxychloroquine for 3years and it was the chart that I found I had a problem.

With regards wakeham

[Tree6]

Hi Wakeham I have been taking hydroxycloroquine for over 15 years. I have tolerated it very well during this time. The eye side effects that you can get are specific (and I don’t think to do with cataracts). I had cataracts before starting this med due to taking steroid eye drops for another condition (uveitis). Good news is that cataracts are pretty easy to fix! I am not aware that Sjorgens is connected to Hydroxycloroquine but I think it is an autoimmune disease so could well be connected to the RA? People with one auto immune problem it seems are more likely to get another - not fair!

[wakeham in reply to Tree6]

Hi Tree6 thank you for your help your right I have Thyroid, that went on to RA ,then Sjorgens disease so they are all linked I think! But thank you for telling me that you have taken Hydroxychloroquine for 15 years the thought of that worries me as it’s not an easy medication to take well I don’t think it is! Hope you stay well Tree6.

Regards wakeham

[lilyak]

Hydroxychloroquine doesn't cause cataracts. Your eyes need to be screened for hydroxychloroquine retinopathy. The risk is very low, unless you're taking a high dose, or you've been on the medication for many years. Having taken it for 3 years, your risk is very low. The risks increase after 5 years (when studies show around 7 people in a 100 will develop retinopathy) but the risk really increases when you've been taking it for 20 years or more (studies put the number at between 20-50 people per hundred). As others have said, you need to have regular eye screening tests. Are you taking prednisone? Pred is known to cause cataracts, but again most often in people who have been taking it in high doses or for a very long time.. Sjogren's very commonly co-exists with RA. Hydroxychloroquine is one of the safest medications, and definately the mildest with the best safety profile and side effect profile. If you're concerned about it you should talk it through with your rheum, but hydroxy is very safe, in fact the safest option for RA.

[wakeham in reply to lilyak]

Thank you for your information lilyak I’m on 400mg daily, I have blood test done regularly plus eye tests etc. Going by your information as the years advance things might get more complicated! But I must say everyone’s help this evening has given me more confidence thank you.

Regards wakeham

[Lolabridge]

A good friend of mine has just had her cataracts done and is absolutely thrilled with the improvement in her vision because she had been struggling to read and watch the TV. We both agreed that we hadn't realised how much our vision had deteriorated until after we had had them done. It's such a simple and straightforward procedure and takes no time at all. Everyone I know wishes they had had the chance to get it done sooner so, if your specialist says they need doing you're lucky and can probably get them done soon.

[embroy]

I had taken it for 6 months to 1 year, but I spoke to my Rhumotologist and was taking 2 tablets, was 400 mg, but now I am taking 200 mg and spoke to the eye specialist up north, and he said the second one would be in 5 year's time, at the moment I am being seen in one of the hospital in London.