Hydroxychloroquine Retionopathy Monitoring - others experience?

[Orangebox]

I’ve been on Hydroxychloroquine 5 years plus and realise that I should now be eligible for NHS Retionopathy Monitoring for taking this DMARD.. As I have not seen my rheumatologist NHS consultant for at least 2 years (annual check-ups have ceased), I raised this topic a locum GP, who I could tell didn’t know what I was talking about. It’s taken some time but I have at last got a referral letter. Have others found this eye monitoring hard to secure?

[KittyJ]

I only ever had annual eye checks at my opticians after the initial one at the hospital. They did extra checks/scans each time because I was on hydroxy. I had to stop it because of retinopathy which was picked up at my appointment.

[Orangebox in reply to KittyJ]

curious to know - did you know you had retinopathy: were you aware there was something not right with your vision?

[KittyJ in reply to Orangebox]

I’d noticed a small change but thought it was floaters and it was brought up at my eye test. I used the amsler chart I was given to keep an eye on it but decided to stop the hydroxy after talking to my rheumy, Opticians don’t see it very often and I felt their wait and see attitude wasn’t right so I took it into my own hands as I felt I didn’t want to risk my eyesight any more.

[Fruitandnutcase]

I’m in the same position as you. I’ve been taking hydroxychloroquine since about 2015. I’ve had a check up every year since then - slightly more than annually.

Last year I was in a lot of pain and emailed the department to say it had been two years since I had been seen and was given an appointment. The follow up letter copied to myself and my GP said I would be seen in September this year but so far nothing.

The eye department at my hospital is already incredibly busy with ‘its own’ patients with visual problems (for example the wait for cataract surgery is years long - even with some of the local optometrists doing a lot of the pre and post op work) let alone them having to pick up patients from rheumatology.

I have never had a hospital eye examination in connection with taking hydroxychloroquine, I have only ever had my hands xrayed once in all those years and the rheumy has only ever ordered blood test once too - I think I must have had bloods taken by my GP before I was referred.

So, I have an annual eye test and an OCT scan done every year by my local optician at around the time I should be going to my rheumy and I have downloaded a thing called an Amsler chart to check myself at home - at least that way I know my eyes are ok. If you are taking hydroxychloroquine it really is vital that your eyes are checked regularly by someone.

[Boxerlady]

I started Hydroxychloroquin in 2019 and was told by the nurse to have regular eye checks but wasn't offered anything through the hospital. I've been annually and paid for the extra scan. Last time (January this year) the optician told me that the guidance had changed and I no longer needed the scan but I insisted and then the rheumy consultant asked me if I'd had one at my consultation a month later 🙄

[Titch55]

I went to the eye clinic for something else and when they saw I was on hydroxychloroquine they said I should be seen yearly. That was 4 years ago and I have been called every year since. They do various scans and tests. I do not see a Dr but receive a Dr’s letter with the results.

[rmros]

Rheumatology have never mentioned it to me. It was mentioned at my last medication review, more than a year ago. The clinical pharmacist doing the review said they would see about referring me - I've been on hydroxychloroquine for seven years - but have heard nothing since and not had another medication review.

Then I saw my optometrist in July. I now have cataracts (I know this is common as we age, but I'm 44 and it's pretty devastating). She said the waiting lists can be a year so it was a good idea to get on one now. But as I haven't spoken to anyone since and they won't give me a medication review (see my last post about this if you like) I can't chase.

My feeling is that the GP prescribes my hydroxychloroquine so it's their responsibility to arrange the checks, but my rheumatologist should be on the ball about it too. They don't seem very interested, and always say the risk is low etc, but it's not their eyes is it!

[bienassis in reply to rmros]

Well, rmros, this is appalling! I've already contributed to this thread after reading a post from Orangebox. I would have thought that, considering the amount of time Hydroxychloroquine has been used for treating Rheumatoid Disease, the possible dangers would have been more well known. Especially among rheumatologists who prescribe the drug. At your age - 44 - the risk would quite likely be considered low, but not that low obviously. My feeling is that any risk to the eyes needs a lot of thinking about. Patients should not be brushed off with a shrug of the shoulders!

I refused it, and have never regretted it. But time is needed to consider any drug, especially if it can destroy the sight. Drugs, and effective ones, are not in short supply.

bienassis

[Salamanca21]

No I haven't..I get it annually at Specsavers..costs £10, which obviously is well worth it. I know of a fellow RA sufferer who is going blind from Hydroxychloroquine, so it is very necessary, but I don't bother with the GP, any problems, I go to the rheumatologist. Good luck.

[nanny_bee71]

I have annual eye checks when I was on hydroxychloroquine - I was told it was a requirement

[VeronicaF]

I been told its 7 yrs now. if you been on it for 7 yrs

[CeeY]

Here in Ontario Canada if you are put on hydroxychloroquine you have a baseline visit to an Opthamologist before starting and annually for as long as you are on it. I find it very interesting to see the different approaches between Canada, the UK and the US in all aspects of treating this disease!

[grumpygirl]

I have an annual check at my optician's but she told me that this doesn't cover the additional more detailed checks that are necessary. She could do them but charges well over £100. I approached my GP who fobbed me off, then contacted my Rheumatologist with a link to the current guidance supplied by my optician. They then instructed my GP to refer me to the hospital and I have now received a letter from the hospital. It gives no idea of timeframe and as I have already been on hydroxy since 2014 I guess that this is yet another appt that I will be chasing up.

[Tired-fed-up]

I’ve just started hydroxychloroquine. I saw my optician last week and he said I would also need to go to the hospital - I think he said every 3 years - because they do extra tests that the opticians can’t do to pick up any problems early. I must admit I go to the opticians fairly regularly because I have problems with dry eyes and high pressure - a “health check” at the opticians is free (in wales at least).

[Cien]

I had Hydroxychloroquine on and off from 1999 because the diagnosis for Sjögren’s syndrome was not established definitively. I had annual eye check for my shorted eyes but the opticians had not mentioned that Hydroxychloroquine may cause Retinopathy. In 2018 I was diagnosed as having Retinopathy after my new rheumatologist’s (the old one left) referral to a specialist Ophthalmologist as she was concerned about the side effects. After the retinopathy was diagnosed hydroxychloroquine was stopped immediately. I now under a yearly surveillance program and the damage has not progressed. Thanks God

Apparently it is only recently the surveillance program was set up to look into this issue.

[AR50cyclist]

I started Hydroxychloroquine 18 months ago and within 3 months had been referred by rheumatology for a baseline retinal scan. My consultant has told me this will be done every 3 years. I thought this was standard practice.

[Karengreen66]

I’ve been on Hydroxychloroquine for around seven years now and before I started it, was required to have an eye check. I was then told to have my eyes checked every year. Interestingly, the optician didn’t think it was necessary but I prefer to follow the instructions from Rheumatology. For the past three years the local eye hospital now send for me to have them checked which is more thorough I feel.

It’s disappointing that there seems to be such vast differences according to location

[bienassis]

Hello Orangebox

It was suggested, 12 years ago, that Hydroxychloroquine added to my Methotrexate would be a good move for me. I was about 75 at the time, and after a few enquiries was told nobody over the age of 60 should consider it because of the possible effects on the eyes. Anyone who has already had lens replacements should also be wary.

I mentioned these points to my rheumatologist and was told; "You'll be OK for a while - don't worry".

I never accepted the offer. You don't mention your age but anyone hovering near that age should be very careful.

Good luck

Bienassis

[Orangebox in reply to bienassis]

thanks for that, I didn’t know there was an age concern for Hydroxychloroquine. I will query this at my next Rheumatology appointment as I’m on that cusp. I’m just keen not be on biologics, and Methotrexate gave me awful side effects.

[bienassis in reply to Orangebox]

You could try the NHS web site about the hydroxychloroquine; but it is known that older patients are more vulnerable to eye problems anyway, but with that drug the vulnerability is increased - especially if you have already had procedures on the eyes. Certainly mention it to your rheumy.

My rheumy knew the risks and knew I had had surgery for cataracts, but discounted my worries - as I mentioned in my post. At the time I was well into my 70s and thought the risk was too great. She accepted my decision.

It's well worth a discussion.

Good Luck

Bienassis

[AshPen9]

I've been taking Hydroxychloroquine for nearly a year. My rheumy told me to get an annual check at the optician's for the first five years, after which I must go for an annual hospital check. My optician knew about the check that he needed to do, but wasn't aware of the hospital check. He said that he has never detected problems in any of his clients that take Hydroxychloroquine. I'm going for the check next week. He said it normally involves an OCT which they don't charge for. However there is a more detailed one that he recommends which will cost £24. I'm going to have the more detailed one. The optician is quite caring and experienced so I don't think he'd recommend it just for the sake of it.

[pippin_fort]

I have only ever had one eye appointment at the hospital and that wax years ago. I am probably due another. My eyesight has been terrible since I had Covid. You are making me think I should ask for another check up.