Hydroxychloroquine: Morning. I have been on... - NRAS

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Hydroxychloroquine

d-creasey
d-creasey

Morning.

I have been on Hydroxychloroquine 200 twice a day for a year.

When I was put on it my pharmacist told me I needed a yearly eye test which my specialist nurse confirmed when I saw her this week.

The optician told me last year two yearly eye tests are fine but as my specialist nurse said yearly I went into my opticians this morning and they are blaming the NHS for not allowing a yearly check.

Is anyone else that is on this drug being informed the same?

I'm 66 so don't pay for my eye tests now but would do for reassurance.

Thank you for reading any advise will be welcome. Delia. X

74 Replies
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Sounds like a cutback to me

d-creasey
d-creasey
in reply to Hidden

That is my thoughts Minty1972.

My optician will give me a check every year. He will always look at my eyes if i go in there and ask him just to look at them.xxxx

d-creasey
d-creasey
in reply to sylvi

Wish I had him. This is a new optician who I have only met once but I do not have confidence in him now sadly.

My pharmacist who I have know for 10 years told me I should have yearly checks and I have every confidence in him.

sylvi
sylvi
in reply to d-creasey

Pity you don't live near me as i would take you to see my optician. He is that good with me.xxxxx

d-creasey
d-creasey
in reply to sylvi

Thank you Sylvi that would have been very much appreciated. Xxxx

The recommendations have changed. Now you should have a baseline screening during the first year of taking hydroxy, and then move to annual screening after you have been taking it for 5 years as the risks during the first 5 years are extremely low.

Here is a link to the guidance from the Royal College of Ophalmologists - who should know!

rcophth.ac.uk/wp-content/up...

The thing to be sure of is that you did the visual field tests at your last appointment and they did take a photo of your retinas for baseline.

Thank you very much.

I had eye problems about 8 months following start of Hydroxychloroquine. Opticians referred on and eventually saw an eye specialist at the hospital. By the time I saw them had stopped Hydroxychloroquine due to migraines which started about a year of starting it. They said that it's good that I stopped it and shouldn't go back on it.

Sorry to hear that. I hope your team found you a drug that works for you. X

Yes I get a 12 month check on hydroxy I saw eye consultant a few months ago and he said he would notify my ra consultant as I should have been referred I went for a different check as I had floaters which are harmless but he said I should be seen my them because of being on hydxy

d-creasey
d-creasey
in reply to Nsmith13

Thank you Nsmith13

My Rheumy told me to have my eyes checked before starting on hydroxychoroquine & every 9-12 months which I did. Then last yr because I’d on the meds for five yrs he booked me in for a more thorough eye test at the hospital. All was good & they’ve already booked me in again for later on this yr.

I still go to my regular opticians once a yr.

d-creasey
d-creasey
in reply to Caza

Yes so did mine but as i had just had them checked prior to seeing him I did not have to go again.

Thank you for replying.

Thank you Caza for your reply.

I had 3 eye tests within a year of being in HDQ due to a reaction to my eye drops (not HDQ). I was never charged and asked to come back after a year.

Thank you Mmrr.

Hope all is well now.

Should of said, never been refused or charged.

My eyes have suddenly done a huge change. They are blamibg the hydroxychloraquine. Been on it 4 1/2 yrs. Never had these special tests. I have a good optician who now says 6 monthly tests essential and is referring me to hospital.

d-creasey
d-creasey
in reply to Hattie23

Sorry to hear that Hattie23. X

Hattie23
Hattie23
in reply to d-creasey

Thank you. You take care x

I was told to have a baseline before I started then annually. I don’t pay for my eye tests as I’m on the contact lens scheme with my pharmacist but I’ve never been told I can’t have an eye test. My optician always says gets rather see me sooner rather than later if I think there’s a problem xx

Went to Boots the other day to collect Hydroxychloroquine, unavailable as they are in short supply. Interesting?

Oh no. This is the only drug so far that has got my RA under control. X

Caza
Caza
in reply to Jackadoodle

Oh no, here we go 😡

I am 64 and have been on Hydroxychloroquine for around 4 years. The receptionist at my Optician told me I could only have a free test every two years but when I spoke to the Optician himself he agreed to the annual check and I have not had a problem since. Change your Optician.

d-creasey
d-creasey
in reply to cerajon

Good advise I am thinking of doing this. Thank you. X

I had my eyes checked yearly at the hospital eye department as part of monitoring whilst on hydroxychloroquine. Rheumatology referred me initially for it and asked for it to be done yearly. How strange that all care for the same treatment is different.

Very strange. My specialist is putting it in my copy of the letter she sends to my GP so I can take to the opticians and show them. X

That’s good. At least it will prevent any future problems.

Could you not go to a different opticians? I go to the one in Boots and I get mine tested every year. Where do you live? I am in Scotland

d-creasey
d-creasey
in reply to mille

I'm South East. It's what I'm thinking of doing. Thank you for replying. X

Hi Delia if your optician continues to refuse ...ask your GP for a letter prescribing yearly tests. I have had yearly eye checks for years even though I’m not on hydroxy.

Have you asked Specsavers.....they have contracts with the NHS and maybe more amenable than an Independent optician?

Or as you say if it is just another cost-cutting exercise, like you I would pay for it myself ..... I think it’s only around £20 isn’t it ?

d-creasey
d-creasey
in reply to AgedCrone

Hello AgedCrone.

It's Specsavers I'm with. I've used them for years but in another town. This one is new to my town and I've only used them once so I have not built a relationship with them yet.

I'm thinking seriously of going back to the old one.

I don't mind paying for peace of mind. X

AgedCrone
AgedCrone
in reply to d-creasey

Hi Delia....I know what do you mean ....in the town that I am in the Specsavers used to be brilliant but the franchise was sold on and to me the new staff seemed a bit slap dash.....so I changed opticians to a sole practitioner & am happier with the service. I buy my specs on line & I’m very happy with that.

Luckily my drugs don’t affect my eyes,but I still want a professional correct eye test and all the other tests they do these days.

Like you I would rather pay than let something that needs attention be ignored.

d-creasey
d-creasey
in reply to AgedCrone

Thank you for replying I think I will go to an independent option myself after giving it more thought. X

AgedCrone
AgedCrone
in reply to d-creasey

The way I look at it you can have a joint replaced...but once your eyes are damaged ......as far as I know there aren't many options.

Even if we have to pull in our horns financially it’s worth it.

Good luck...have you thought if trying Boots Opticians....I have heard good reports from people who use them.

Was told that if I wanted yearly tests would have to pay for the extra tests

AgedCrone
AgedCrone
in reply to Maggsie

It may be age related.......the NHS website says every two years until you are 70?

Maybe if something unusual showed up you would get more regular tests?

Did your optician quote a cost for extra test?

Maggsie
Maggsie
in reply to AgedCrone

I'm over 60 so don't normally pay, but this time it was £19

AgedCrone
AgedCrone
in reply to Maggsie

I suppose that is not too bad every other year is it?

But if you are on any drug that might affect your eyes I think it should be available free yearly. Maybe you could ask your GP?

I must get mine cos I’m a 70+ crumbly!

AgedCrone
AgedCrone
in reply to AgedCrone

I wasn’t very clear above .....I meant you can have it Free on the NHS, every two years after you are 60, then after you are 70 you can have it yearly!

Well I think that’s what I mean ! I think I had better increase the font size on my iPad !

d-creasey
d-creasey
in reply to Maggsie

I would be happy to do this if they would agree. X

I have been getting yearly eye tests since 2016 and am 67. Maybe try another optician

d-creasey
d-creasey
in reply to Robin0

Thank you I will more than likely do this. X

I'm on this drug too. You definitely should have your eyes checked yearly

Thank you.

When my copy of my letter arrives from my consultant which states this I will take it to another optician. X

I’ve been on them for 4 years and like everyone else I had an eye test just before starting them then a yearly test thereafter and never been charged. Look into other opticians see what they do

Thank you Ladybird67 I will do this. X

d-creasey, in my first year I had an optician say it’s not necessary to have a test each year as the risk is low on the early years you’d have to be taking them for many years to have these risks...but after consulting this information with my Rheumatologist’s he said this is so wrong that he has had patients with eye problems early so it’s imperative to be tested each year. I’m glad I checked and then changed my optician. I wouldn’t always go by what the optician says as your consultant is the ones who knows the disease best as well as medical scientist. I hope you get on well with this medication as it has worked wonders for me but took time. A bit of a tip from a scientist is to take both your tablets at the same time not separate as they’re not as effective. Good Luck keep us posted 🤗 xoxo

Thank you Ladybird67 that is what I am thinking my consultant will know best. X

I had my eyes checked annually free at the local Specsavers (I am over 60) while taking Hydroxychloroquine. Good luck.

d-creasey
d-creasey
in reply to fred42

Thank you fred42. X

Hi. I am on Hydroxychloroquine as well and my optician at Vision Express said that I don't need extra eye test because of this. He said I just need to use an eye drops for dry eyes. He was a horrible optician...I almost cried when I left.

d-creasey
d-creasey
in reply to Lina282

Sorry to hear about your bad experience Lina282. X

Lina282
Lina282
in reply to d-creasey

I will just ask for a letter from rheumatology :)

I think that's the best we can do.

All the best xx

Caza
Caza
in reply to Lina282

😡

That is shocking - you most certainly do need extra eye tests! I would definitely go somewhere else. See my reply further down with the codes optician’s can use them ensure there are no problems getting an annual test if a doctor has recommended it.

Thank you for your reply Fruitandnutcase. I will look for another optician. x

I thought yearly I went last week and my optician said the recommendations have changed recently and he would be writing to the hospital as they should be monitored more frequently

d-creasey
d-creasey
in reply to Liz018

If I don't get anywhere I will contact my specialist nurse as they are advising yearly. Thank you LizO18. X

I had 1 checks annually....because of drug but as there was glaucoma in the family I had 2......never had an issue.

Hi

I believe you are wrongly informed as I have been on Hydroxychloroquine for 10+ years and in the last 3 years my Rheumatologist has insisted on me having annual eye tests at my opticians as well as going to a specialist eye hospital once a year for in depth checks of the back of the eyes as this is where they check for the changes that can occur as a side effect of the medication.

Please insist, as these changes can be quite subtle to begin with so it's best for the hospital to have a baseline to compare from year to year. Good luck.

d-creasey
d-creasey
in reply to Foofsie

Hello Foofsie.

Thank you for your advise.

I will certainly keep going until I find an optician that will check my eyes yearly. X

I've taken HCQ for 10 years and never been referred to a hospital optician. I tend to wait for a free Specsavers (or Boots) voucher before I have an eye test. I read that the risks of hydroxychloroquine retinopathy can be 7 patients in 100, after taking it for 5 years. This risk can increase to 20-50% for patients taking it 20 years plus.

I don't think HCQ has been that effective (despite 10 years of it) and intend to discuss stopping it when I get a rheumatology appointment (still waiting after 3 cancellations!).

d-creasey
d-creasey
in reply to BoneyC

Thank you BoneyC.

It is the only treatment that has got my RA under control I'm.pleased to say.

Sorry that it has not worked for you.

I hope you get to your appointment soon. X

Hidden
Hidden
in reply to BoneyC

Same here BoneyC, never seen the hospital optician and I just go annually to Specsavers costing £10 with a voucher. They seem very thorough and do extra checks as they know what meds I’m on.

Nonsense! I'm currently working in rheumatology and the advice is still initial eye test for baseline before treatment commences and then annually for as long as you are on Hydroxychloroquine. I've never had problems getting annual checks, even since hitting 60 and getting them free. I'd recommend you find another optician.

Thank you mistymeana I am going to do that next week. X

Hello. I've been on this drug for over 5 years now, and was told to have yearly eye checks, which I always have on the NHS. 200 mg twice a day. I had a text message from my doctor saying she has noticed I've been on it for over 5 years, so has referred me to Opthalmology dept. How good is that. I didn't even need to ask. I was always advised to have yearly checks not 2 yearly. Good luck, hope you get some more info , it's always worrying when you get conflicting advice.

Hello.

Yes it is crazylady57.

I've received my copy of my Gp's letter this morning and my specialist has added to the letter that I need yearly eye checks.

I am going to try my old opticians and show the letter, which is the same company but in a different town, if they say no as well I will try the independent practices in town.

If no one will check me yearly then I will go back to the team looking after me.

I do not want to stop this drug as it's taken 10 years to get my RA under control, and this is my wonder drug but I am not going to put my sight at risk.

Thank you for your reply. X

You can get an NHS eye test done every year if your optician puts it on a Code 5.1 that is for a sight test at the request of a medical practitioner which is why you want it done. Code 5.3 is identified in protocols as needing to be seen more frequently because of risk factors and there are risk factors involved with taking hydroxychloroquine.

Do you know you can download an Amsler chart and keep a check on your eyes in between eye tests. It’s very important to keep an eye on your eyes if you have sudden severe blurring or drop in your vision or there is distortion on the Amsler chart go straight to A&E . That’s for England and Wales.

Look for an optometrist who has access to an OCT scanner - you will have to pay between £20 and £40 for that but it’s well worth it. Ask around and you will find out who has one.

The same codes may apply in Scotland but I don’t know for sure - but there must be something.

Hello Fruitandnutcase.

Thank you very much for this information. I have screen shot the codes for when I go into the opticians.

Ok don't mind paying so I will ask if an OCT scanner if available.

I will look up the Amsler chart thank you very much. X

I was on 200 ( 2 times daily) my for 6 months, I spoke to my Rhomatologist, and now I am taking one 200mg , and hopefully stop it soon, it have have one eye test, then next is 5 years after. Hopefully nothing wrong.

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