Taking hydoxy now been referred to eye dept what to e... - NRAS

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Taking hydoxy now been referred to eye dept what to expect?

Chrt profile image
Chrt
14 Replies

Hi all, Iwent to optician couple of weeks ago eyes good but she found deposits so referred me to eye dept at hospital, my appt is on thursday. Does anybody know what they will do re tests etc? 1ve been taking hydroxy 200mg twice a day for & 5mg prednisalone daily 20 mths now & suddenly getting a bit anxious on what they will do, silly I know!! Appreciate any replies, thanks.

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Chrt profile image
Chrt
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14 Replies
helixhelix profile image
helixhelix

They will probabky just do much more detailed scans of your cornea and retina, maybe putting drops in so expect that you might be a bit blurry afterwards. Fimhers crossed that this is all precautionary and there’s nothing permanent.

Chrt profile image
Chrt in reply to helixhelix

Hi helixhelix well that doesn.t sound too bad drops shouldn,t be painful & yes probably just precautionary. Thanks muchly :)

Bookworm55 profile image
Bookworm55

I was in the same situation about 4 years ago and had the drops and scans that helix mentioned. The conclusion of the consultant I saw that day was that there was some damage and I was taken off hydroxychloroquine (replaced by sulfasalazine).

I have to say that in follow up ophthalmic appointments none of the various doctors I’ve seen found any damage beyond what would be expected at my age (60s). Of course it could well have been reversed or…..? I’ve now been discharged from the ophthalmic dept.

Chrt profile image
Chrt in reply to Bookworm55

Hi bookworm I,m 69 could be just my age then bit surprised as its only 20mths Ive been takingit & I am doing really well with it & preds. Thank you for the info :)

Bookworm55 profile image
Bookworm55 in reply to Chrt

Yes I’d only been on hydroxychloroquine for 2-3 years and the doctors were surprised about that.

Chrt profile image
Chrt in reply to Bookworm55

oh dear bookwork55! ! still its a good thing we are being monitored for these problems it can cause. I was really surprised when hossy rang me with appt as its only 2 weeks since eye test at opticians & she wrote to them so they,re on the ball. Hope all is well with you now you,re off it :)

Bookworm55 profile image
Bookworm55 in reply to Chrt

It’s good to hear the hospital is so on the ball since the pandemic. They are obviously working so hard to ‘catch/keep up. It seems to be the same here.

Chrt profile image
Chrt in reply to Bookworm55

Yes getting back to normality at long last thank goodness :)

Bessieboo1 profile image
Bessieboo1

Hi, I’m an ophthalmic nurse at an NHS hospital. Our policy with regards to patients taking hydroxychloroquine. You will have your vision and your eye pressures taken followed by a 10-2 visual field test then you will have your eyes dilated so the Dr can look at the back of the eye (you won’t be able to drive after these), once your pupils have dilated you will have an OCT scan and a colour photo you will then see the Dr. Your appointment could take around 2 hours. Hope that helps. Xx

Chrt profile image
Chrt in reply to Bessieboo1

Hi bessieboo1. good job you told me this as was going on my own driving not now obviously so helps a great deal! Also didn.t think it would be that long, thank you very much! :)

Bessieboo1 profile image
Bessieboo1 in reply to Chrt

Really glad that it helped. I apologise if my reply looked a bit clinical but just wanted you to know what you are likely to expect. I hope that you get on ok and hope you have a lovely Christmas and a happy and healthy New Year. Xx

Chrt profile image
Chrt in reply to Bessieboo1

No not at all bb1 it was just what I needed to know otherwise I,d have just waltzed in expecting to be out & off shopping an hour later lolol. Wishing you a merry Christmas & a very healthy & happy New Year too, thank you :)

charisma profile image
charisma

Sorry to see this… we should be on such drugs only a short time, ideally. Both are known to have long term damaging effects eg to eyes.

I was on HCQ (Hydroxychloroquine) with MTX (Methtrexate) but Rheumatologist reduced HCQ after a few months, and stopped it after a few more.

The longest I have taken Prednisolone, and only at 5mg most of that time, is a year. I still got osteopenia, but was past the menopause which also can contribute. Am on 10mg Prednisolone since RA flare is bad just now. Dropping to 5mg soon then off if possible till other drug kicks in.

The eye tests should be as described by HelixHelix; advisable not to drive and expect photosensitivity too after drops. They can examine and photograph the retina etc with modern equipment. Painless. Best of luck!

Chrt profile image
Chrt in reply to charisma

Hi Charisma I have tried to reduce preds but joints start swelling & pain gets out of hand. Re hydroxy its been a matter of its working & as long as I have eye checks & no other side effects docs were fine with it as was I. Swings & roundabouts it seems, I just want quality of life with minimum pain & ability to use my limbs as much as I possible can. But lets see what the tests show it could be nothing to worry about hopefully thxs for your input :)

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