Hydroxy eye screening, should I still go now I'm not taking it?

[Choccy8]

Hi everyone. Looking for some advice here, sorry for the long read.

I took hydroxychloroquine for around five years, before stopping it around 18 months ago. Since stopping it (because, obviously...) I keep being offered appointments for the specialist eye screening, which I never had while taking the drug. After getting an appointment last summer, I called my Rheumatology team, and they said I didn't need to have the screening now that I wasn't taking it.

Now I've been sent another for this year. The eye people say I am welcome to keep the appointment, and I am wondering if it would be a good idea. It is quite an expedition for me, though, and will be quite tiring. Thanks for any advice!

[Betty909090]

“Rheumatology team, and they said I didn't need to have the screening now that I wasn't taking it...”🧐

======

This is WRONG!

Anyone who prescribes HCQ should also refer the patient for an ophthalmology appt to check if the patient has pre-existing retinopathy/maculopathy.

If Rheumatology first prescribed HCQ, baseline checks of your retina should have been done before taking HCQ!👆

If I were you I would have your eyes screened for any traces of HCQ retinopathy. This is important.

The ROYAL COLLEGE OF OPHTHALMOLOGY say that HCQ induced retinopathy is often an overlooked and underestimated side effect of taking HCQ.

I’m very concerned that after 5 odd years of being on HCQ your eyes have not been checked for retinopathy at least once!

It should have been done yearly ideally!

HCQ is a toxic drug to ones eyes!

lt persists in one’s body for ages.

Your eyesight is precious.👆

All the best.

ps Why the irresponsible advice from Rheumatology?

Looks bad on them.

[Choccy8 in reply to Betty909090]

Thanks, Betty! I think I will go for the screening. It's ironic they offer me the test after I've stopped it...

[Betty909090 in reply to Choccy8]

Yes, good for you. Best to be sure there’s no retinopathy!

Don’t blink!

They’ll take photos of the back of both eyes.

Before they do they put these stingy eye drops to dilate your pupils so that they can see those retinal capillaries better.😳

Hope it goes well.

[Suvi8901 in reply to Betty909090]

Hello Betty,

I’ve followed your many posts on HCQ and retinal toxicity and thanks for that.

I can only sympathize with all the neglect and dreadful waiting around for advice from the various docs 😰.

No one has posted this caution about HCQ and eye disease from the Patient’s leaflet. So I thought it’s highly relevant to put it here:

“2. Do not take Hydroxychloroquine sulfate and tell your doctor if you,

*have an eye problem which affects your retina, the inside of your eye (maculopathy) or you get a change in eye colour or any other eye problem…” etc

This is a warning/caution from the manufacturers themselves which reinforces what the RC of Ophthalmology are saying for a long time.👆

One wonders why you have been neglected?

Very sorry to hear!

All the best.

[LottieLou96]

There is around 6-12 months I believe that hcq after stopping can still affect the eyes. But as you say it's 18m down the line for you.

[Tanitani]

Correct. If you aren't taking it anymore, you dont need to continue the screenings.

[Dalilatm]

Hi Choccy8 That's a good question. "Hydroxychloroquine-induced toxicity usually will not occur before five years of taking the drug." So you should've had your eye test right after the 5th year, and after this you usually have one yearly eye test, which clearly you won't need because you're not taking it anymore. Good luck

[Betty909090 in reply to Dalilatm]

In some individuals HCQ induced retinopathy may occur well before 5 years!

In my case I already had diabetic retinopathy and should not have been prescribed it at all.

Good practice dictates that one should have a retinal screen before taking it to be safe!

Many docs do not tell you but should refer to Ophthalmology.

(Read previous posts on HCQ side) effects.

[SufferingMike21]

Hi rheumatology wanted me to take hydroxychloroquine but hematology consultant advised me not to.However rheumatology consultant said to still have eye screening done , so eyes could be checked and if in future started taking hhydroxychloroquine eyes would have been screened,I went to morefeilds eye hospital all was ok .

So yes I would have eye screening done for peice of mind hope this helps.

Mike

[Choccy8 in reply to SufferingMike21]

Thanks, Mike!

[CavendishCool]

This is what I was told here in Suffolk. Rheumatology said that I would not be invited for an eye check until after 5 years of being on Hydroxychloroquine; (I have been on the H for 18 months), yet they would recommend that I mentioned it to my optician; she completely lost it saying that it was the hospital's responsibility to check my eyes before I started on Hydroxychloroquine, but as I was a long standing customer she would do all the tests recommended because I have dry eyes anyway and continue with yearly appointments. I related that back to my next Rheumatology visit which was noted. The added comment was that the hospital did not have to check my eyes until I had been on Hydroxychloroquine for 5 years. I thought to myself fleetingly, after any damage was done. Anyhoo, the other comment that Rheumatology added was that I should not be wearing contact lenses which I then related back to the optician who again I had to pick off the ceiling pointing out that I could wear my contact lenses as much as I liked because I was having twice yearly check ups for my contact, so SHE would KNOW if there was any damage being done. Her other comment was that the eye I was wearing my only contact in was less dry than the one I don't wear a lense. Anyhoo, again, after playing okey cokey appointments between 2 health professionals, I have thought to myself that if I wanted my car to be fixed, I would go to a garage right, not the optician because guess what the optician is not likely to fix the car. Although my optician is stroppy enough to be able to. Personally, I go to every appointment I'm offered, just in case... Have a Happy Bank Holiday.

[Betty909090 in reply to CavendishCool]

We’re talking here about HCQ induced retinopathy so Ophthalmology must do the screening not any old high street dispensing optician!👆

HD photos of the retina have to be ✅?

It’s not an eyesight test!👆

What do Rheumatologists know about our eyes?

Be safe.

[Partner20 in reply to Betty909090]

Many high-street opticians now offer OCT testing for an additional fee, which is a specialist retinal examination, and can indicate concerns that need further investigation. I have additional screening at my independent optician, where staff also work at our local eye hospital, and specialist scanning equipment is available, with records of my scans being kept, for hospital use if necessary.

[Choccy8 in reply to CavendishCool]

Thanks CavendishCool! Yes, I'm leaning strongly towards going, on a just in case basis!

[KnitSewPurl]

Well, anyone who had Hydroxychloroquine should hv they eyes checked full stop!!

you should get your eyes screened . my dear . whilst you might be tired best you get it screened and get it checked just for your own benefit.

I had mine discovered only by the opticians when they screened me and I force them to sent a letter to my GP. I was 42 then fortunately there for no toxicity. It was Macular degeneration.

[Betty909090 in reply to KnitSewPurl]

Absolutely!👏👆Prescribers of HCQ have behaved negligently!

Good on you.👏

[Hidden]

If I were to be offered any free health check on any part of my body I’d accept without hesitation.

[chrisj in reply to Hidden]

me too...

[chrisj]

Hi - my hydroxy was stopped and when the rheumatologist that stopped it found out I'd never had screening done she arranged it at the hospital straight away.

All clear as it turned out but it made me nervous waiting for the test and the results. Might be worth getting it done for peace of mind xx

I have them checked at the opticians now with my yearly sight test.

[Choccy8 in reply to chrisj]

Thanks, Chris!