Had anyone had to stop Hydroxy for it causing mild toxicity in your eyes?

[mistygrey]

wondering if anyone has been told by the eye hospital to stop Hydroxycloroquine and that they’d noticed very mild changes in your eyes due to the Hydroxy? Did it go back to normal once stopping the Hydroxy? Thanks

[Betty909090]

Yes!

This link /post may be helpful?

healthunlocked.com/lupusuk/...

[61Annie in reply to Betty909090]

Yes, earlier this year Hydroxychloroquine was stopped immediately as irreparable damage to the retina was picked up. Unfortunately as I expected this triggered a major flare of my discoid lupus. Hydroxychloroquine always kept a lid on it. I’m due to visit eye clinic next week so it will be interesting to see how things are - better or worse.

[Betty909090 in reply to 61Annie]

Hi,

Sorry to hear about the irreparable damage to your eyes!

Unfortunately during the covid 19 pandemic most on Hydroxychloroquine were not carefully monitored by NHS ophthalmologists!😩😱

I’ve now got patchy vision, floaters and blind spots in both 👀. It’s a highly toxic drug to our eyes but unfortunately highly popular for prescription.

Ironically many lupus sufferers nit pick about different brands etc but the drug lingers in our bodies for months because it doesn’t get metabolized quickly. 🥺Scary and underplayed? Hence toxicity will linger for months despite not taking it.

I’ve stopped (coming up to a year) but was on 200-400mg for around 5years daily and refuse to take it now.

Too risky for me.

Hope the retinal damage has been arrested or reversed at the next ophthalmology appt?

Regards.

[mistygrey in reply to Betty909090]

Hi they didn’t say I had any damage just very mild changes in my eyes possibly due to the hydroxycloroquine but he said it’s nothing to worry about and he’s telling rheumy to stop me on the drug now. So hopefully they’ve caught it before any damage was done! I agree people weren’t monitored over covid and myself I changed an appointment during covid as I didn’t want to go into hospitals during covid as I’m on immunosuppressants!

[Betty909090 in reply to mistygrey]

You said “irreparable damage” but they say “ mild changes”! You need to find out the truth quickly!

If the eye specialist is telling the rheumatologist to stop HCQ then you should. The rheumatologist has prescribed it but is NOT an expert about our eyes.👀

[mistygrey in reply to Betty909090]

no I said very very mild changes no damage was ever mentioned, but they think hydroxy may be starting to cause the mild changes. I see an eye specialist he’s the one who told me about the changes as I just had eye scans and photos at the eye hospital in December

[mistygrey in reply to Betty909090]

and yes thankfully I already stopped Hydroxycloroquine myself a month or so ago as it wasn’t really helping me

[mistygrey in reply to Betty909090]

I have an appt and follow up scans at the eye hospital booked this month so I will be making sure I know the ins and outs of what they say mild changes are!! They won’t be fobbing me off but let’s hope it is just very mild changes!!

[Betty909090 in reply to mistygrey]

I’m actually responding to the post of 61Annie

Sorry!

[mistygrey in reply to Betty909090]

no problem but you are very right I will be finding out what mild changes mean! I won’t let them away with fobbing me off but hopefully they’ve caught any changes early in my case and I will be ok!

[Paprika60 in reply to Betty909090]

So very sorry that your eyes got damaged by Hydroxy. What do you take instead to control your lupus? It is my main concern as I have been on Hydroxy for 9 years now. I go to Moorfields but also do another eye test at Specsavers as I feel two negative is far more assuring than one. So far so good but I expect that I will eventually have to face stopping Hydroxy which has been very effective for me.

Almost no drugs worked for me before I got on Hydroxy. Even steroids didn't unless I was on very high dosage. Take care!

[mistygrey in reply to Paprika60]

Hi

Thank you, as far as I know I haven’t got damage as such but very very mild changes the eye doctor said on the phone, he said it wasn’t concerning. But he said that hydroxycloroquine can still damage the eyes even when you stop the drug as it works still in your system for some months before it disappears for good out your body, so even though I’ve stopped there may be damage later on but I don’t know much else yet. I’m hoping they’ve caught it early due to me having eye scans at the hospital regularly and that coming off it will be enough to save any damage!! It’s annoying as hydroxy massively helped my joints I’m also on Leflunomide for psoriatic arthritis so that will have to do for now but biologics are my next route. Keep with Moorfields and ensure your getting regular eye testing at the eye hospital especially as I have eye tests also yearly at the Optician and nothing had been picked up via them. Take care

[Betty909090 in reply to Paprika60]

I’m doing OK on only MMF, 4x500mg/day+ levothyroxine 75 micrograms/day (for primary hypothyroidism). Hoping that MMF will be further reduced? No more Pred!👆

I honestly don’t miss HCQ.

As you can read above I’m actually angry with the neglect ref my HCQ eye monitoring.

I think my lupus condition must be looked after by a higher power as my lupus nephritis hasn’t flared and kidney function is currently good!

[littlemissp]

Hi mistygrey

Sorry to hear that you are experiencing eye problems after taking hydroxy. I have had an ongoing problem with my eyes after being on both hydroxicloroquine and cloroquine for over 15 years. Even though over the years I voiced my concerns over eye issues that I had read about with this drug I was assured that it was safe for me to take as I was on a low dose. After seeing an ophthalmologist about 3 years ago I was found to have severe eye damage. I get really upset when I think about what has happened and also what is to come as I feel my sight is progressively getting worse. My advise to you and everyone else is to push for regular thorough testing by an ophthalmologist and not just an optician as I was having 6 monthly eye tests but nothing was picked up at those checkups.

[dg70]

I go to a specialist eye clinic once a year where they scan my eyes thoroughly which I am told will pick up tiny changes in the eye from Hydroxychloroquine. It's not cheap but as once a year at the least is recommended I felt I couldn't take chances with my eyes as I understand once damage is done it cannot be repaired and may continue to deteriorate. There is a drug like hydroxy out there that doesn't cause eye damage but it's not licenced in the UK yet as far as I know. Let's hope it's ok and we can get it soon. If your eyes have changed slightly then stopping the hydroxy seems to be a must. My eye clinic has equipment not available on the nhs, maybe find a good eye clinic and get a thorough check and really see how your eyes are if you can afford it, should take around an hour for a good check up with an Ophthalmologist?

[mistygrey in reply to dg70]

Hi thanks I am seeing the eye hospital consultant they are very thorough so I’m just glad I went and it got picked up early. What is the other drug called that is similar to Hydroxycloroquine? I’m also on Leflunomide for my Psoriatic Arthritis which should hopefully help keep my flares at bay.

[dg70]

Sorry I can't remember if the article was on here or Lupus uk last year about it. I'll search more and see if I kept it or maybe someone else can remember on here?

[mistygrey in reply to dg70]

interestingly my eye consultant said I could stay on the hydroxycloroquine for now as the changes were very mild but I was thinking no thanks, noway am I staying on a drug that could potentially be causing me eye problems!! He’s speaking to my rheumy to see if rheumy wants me to stop but since I’ve spoke to the eye consultant I’ve just stopped it anyway just incase.. surprised he’d say it’s ok to stay ok it for now though knowing there’s been mild changes no matter how mild the changes are?

[dg70]

I think that's a good idea maybe get a second opinion about this if you need to. I have spoken to so many who are angry about their eye damage from hydroxy and annoyed it wasn't picked up and now have to live with the damage for good.

[ijeasike]

I have had Hydroxychloroquin for 11years. I have my eye checked regularly and a tear was discovered. I had to have an urgent laser retinol plasty on my right eye. I was still not asked to stop Hydroxychloroquin. My eye test seemed normal. So I pray it stays that way.Take care

Ije

[mudglutton]

Hi misty! I've been on hydroxy for about 15 years and also opt for hospital tests (Guys & St. Thomas') and private optician tests. So far so good, though I do get periodic vitreous hemorrhages, which I'm assured are nothing to do with Hydroxy. That said, I have been reducing dose from 400mg/day to 200mg/day. This means I tend to hobble around in the first 30 mins of each day, but it's a price worth paying if it extends the time I can stay on hydroxy. Hydroxy manages my disease will and I fear the day that I have to stop it.