Hydroxychloroquine: As anyone who takes this... - LUPUS UK

LUPUS UK

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Hydroxychloroquine

Angiedj
Angiedj

As anyone who takes this medication knows, we are advised to have yearly eye tests, so, as instructed I went for mine yesterday with a well known high street optician. I was informed that they no longer look for any effects that could be associated with Hydroxy, as instructed by the medical association, due to it needing specialist equipment only used at eye infirmaries and I've to contact my doctor for a referral as it is as yet, not common knowledge! Has anyone else been told the same? Obviously now in the process of contacting my doctor

UPDATE for everyone, I am now awaiting an appointment with the eye infirmary. Many thanks for all of your replies 😀

27 Replies
oldestnewest

I had my eyes checked at the eye clinic at my local hospital last week. This was an overdue check up because I have had eye issues for years (repeated bouts of uveitis for years, developed cataracts and needed surgery which didn’t heal quickly and I was a ‘regular’ at the eye clinic). I was on hydroxy for over 6 years and always had it checked by my Optician who has now retired. I have also had it checked at a well known high street chain. In all these places - including the hospital - there was only standard equipment used (split lamp and bio microscope).

Hidden
Hidden

Anyone else from the US? I was told to wait for 5 years of usage, and that after that, they would have my eyes checked every year? I was concerned about taking it in the first place, but now you’re scaring me more.😬

loopy4me
loopy4me in reply to Hidden

It was recommended by my Rheumatologist to get it checked soon after starting Plaquenil and then every year after. He also said to ask your "eye doctor" if they have the equipment to monitor the eyes for potential deterioration of the eyes from Plaquenil prior to making an appointment. Some drs. don't have the needed equipment. Also, if they have no EYEdea on Plaquenil effects on eyes, not to use them.

Hidden
Hidden in reply to loopy4me

I bet I’ll be ok. My eye doctor is super on top of things/latest technology, etc. But I’ll make sure to check when I have my next appt. Thanks for the info. 🙏

Gmagolf
Gmagolf in reply to Hidden

Really? I’m from California. My dr wouldn’t even prescribe it for me until after I had an eye exam and then I had one 6 months after. They scheduled the next one for a year later. You need to talk to your dr

Hidden
Hidden in reply to Gmagolf

Already talked about it with her. She said they will start checking yearly after 5 years. Maybe you are on a much higher dosage then I am? Idk.

Paul_Howard
Paul_HowardAdministrator in reply to Hidden

Hi Hidden.

The risk of damage to the eyes from hydroxychloroquine is very low, but it increases the longer you take the medication and the higher the dose. The risk only becomes prevalent after five years of taking the tablets so in some cases doctors will recommend a baseline test before starting the medication and then annual checks after the first five years.

Hidden
Hidden in reply to Paul_Howard

Thank you. So yes, my doctor said in 5 years they would start testing my eyes every year. In the meantime, for now, I am on the lowest starting dosage. We’ll see how that goes, as I only started about 5 weeks ago.

My doctor is associated with Scripps in San Diego. A super great medical facility. I really feel good about my association with her. 🤞

Thank you so much for your reply. I know you are an expert in all this so you have confirmed what my doctor told me, and relieved any concerns. I truly appreciate it!

Have a wonderful day! (Well, mine is just starting here, but I guess yours is half through?) Thanks again. BK

Hi, I haven't been told this (though I've only been to the optician once, well over a year ago) but I have had an appt at the hospital eye clinic recently; my rheum consultant told me she had referred me to them as has now become standard practice to have a yearly eye hospital check-up when taking hydroxy. I don't know if this is a regional or UK-wide change.

Hidden
Hidden

I guess I’ve not heard of the street chain, only ophthalmologists?

Cas70
Cas70 in reply to Hidden

Hi Brook, get them checked at ophthalmologist every year. Cas x

Hidden
Hidden

But good to know, to be ware.

Hi Angie! And @Brooksidecourt I am from the US. Guidelines say get a retinopathy scan before starting HCQ and start yearly scans after 5 years of therapy. I see an ophthalmologist because I have strabismus, am near sighted and have sicca which required punctum plugs. I see him yearly. I don’t think they’ll do another retinal scan for five years or unless I have visual complaints.

The toxicity seems to accrue over time with longer exposure or at higher doses. To be honest, I’ve met 2 people who cannot take HCQ due to retinal problems but it seems their doctors couldn’t tell if it was from disease or HCQ side effect but now they cannot take it. It’s the only drug that has truly been proven to reduce lupus flares so I’ll take the risk and trade off. My vision is already crap due to lupus.

Hidden
Hidden in reply to Jmiller623

I am so sorry that your vision is bad already. I hope Hydroxychloroquine doesn’t cause further problems. Yeah, I told Gmagolf that maybe I’m on a lower dose than she is, and it sounds like you are confirming that is why I don’t need to see anyone quite yet.

Thank you🙏, and my best to you!

Thank you everyone, I'll get hold of my doctor tomorrow

They can do a retina scan not being asked to diagnose toxicity just look for changes in the retina. You can keep photos on email and then show them to drs that’s what I do.

That is all that is required from an optician which can then b passed on to consultants who can refer to the people who can diagnose toxicity if necessary. Sound like they were jobsworths. I go to vision express every 6 months and they manage it.

I see an ophthalmologist every year - he's checking for central vision effects. The examination will idea any changes before you get symptoms so well worth getting it sorted.

Hi, had a check up for this a few weeks ago. Optitian had no problem checking for the problem it can cause. My opticians are Allders. Hope you get checked quickly. Good luck

Chris

Yes, I always have a check on the eye ward as they have the necessary equipment

I believe the hospital and GP should take care of the eye checks. Mine doesn’t but always document ps in my letters that I am up to date with my eye checks. That’s ‘that’ box ✅ in their view, I think.

Yes! After 10 yrs of going to the opticians for annual eye tests as I was instructed when on hydroxychloroquine, then at 10 yrs them finding something on my macular then referring me to ophthalmology for it, the eye specialist then told me I should have been seeing them all along for specialist testing!

So I've had to stop the hydroxychloroquine as they are not sure if its caused damage

So make sure u get the proper regular checks

It is best to see a consultant. They have the best equipment in hospitals. I saw my optician yearly and they never saw that I had bulleseye maculopathy. It was only when I told my consultant about my eyes feeling funny that he sent me to the eye department and they diagnosed me straight away. Unfortunately maculopathy is not reversible and I have lost sight due to the toxicity of hyroxychloroquine. I warn everyone to take their eye health seriously when on this drug.

Correct! Specialized equipment is used to check the eyes for possible side effects of long term use of the drug. A field test is sometimes included.

This is done annually for me as am a long-term user of this medication. I'm not having any effects which is good news! Follow it up for your own piece of mind...

Good luck!

I had mine done last week and the optician didn't mention this at all

Yes, best to go through hospital. Know what to look for

Yes, I was told by my optician to tell GP to refer me aswell x

I was also at a well known high street optician couple weeks ago and he scanned my eyes and did further tests due to my being on hydroxy 4 months so far. I also go to the eye infirmary at Newcastle every four months or so for more in depth checks as I already have other eye problems

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