Hello. I have discoid lupus and take 400mgs of hydroxychloroquine per day for the last 6 years. I have seen the hospital opthalmologist twice, once about 5 years ago and again last year. Going forward I think he mentioned an annual telephone check. Today I attended an annual eye checkup at Specsavers to be told I would only be seen every two years from now on according to guidance from the Association of Optometrists.
Has anyone else had this experience?
Hi,
I have been on hydroxy since 2016. I now have an annual retinal check at the hospital to check for any toxicity. I think with long term use, annual screening is recommended?
L x
Thank you. I have possibly been unclear. In addition to your hospital check do you also have an annual eye test with your optician? If so are you getting this annually?
I’m in the USA, my ophthalmologist says our current recommendation is an eye exam every 6 months. It had previously been yearly for those taking Plaquenil. My rheumatologist won’t renew my Rx unless I have annual eye exams. Thankfully each time I’ve had my eyes checked there isn’t any damage.
Hi, I still get my eyes checked every year at the hospital, in fact I go in a few weeks. I’m overdue my checkup at spec savers and keep getting letters and texts from them to make an appointment, I was waiting to see the ophthalmologist first.is t it. Honestly, what good is a telephone check for an eye appointment? It’s as bad as getting one for a physio appointment. Maybe when I get to specsavers they will tell me different, I will wait and see.
I have had this experience but not from the hospital opticians but from Vision Express. They told me that the NHS had changed the eye test criteria to every 2 years so I had to pay if I wanted them done annually. I mentioned it to the optician while she was examining my eyes and she told the receptionist to change it back to annually
get your eyes checked yearly, and every six months if possible, by the hospital, also a good opticians. I believe the risk of damage gets higher the longer you are taking Hydroxychloroquinne also your age. Check your sight yourself in between appointments. In my case I suddenly realised I was missing things but if I moved my eyes it was there again. Amsler grid you can do yourself at home, also the field vision test at opticians will show up if you are not seeing everything. Too late for me as I am now registered partially sighted but I hope you will all insist on having your eye tests regularly. I am told that if it’s found that you are having a reaction early enough then it’s reversible. Hydroxychloroquinne is very good, at least I found it was, but your eyesight is very precious.
I have been on hydroxychloroquine for 3 years. An eye doctor told me that the government had outsourced Hydroxychloroquine retinopathy testing and that the NHS clinic that did do the regular tests do longer does them. I have noticed the consultant leading the previous clinic now works through the outsourced clinic.
My rheumatologist says that OCT used is different to a standard OCT.
Dr Donald Thomas in the Lupus Encycleopedia mentions the test covering:
(i)Spectral-domain optical coherence tomography (SD-OCT)
(ii)Visual field (VF) 10-2 test
(iii) if you are Asian, also a third test each time, either VF 24-2 or VF 30-2 (another part of the retina maybe involved.
If people are at increased risk of eye problems eg due to decreased kidney function, have other retina disorders or taken tamoxifen, then the Lupus Encyclopedia says eye tests should begin immediately.
Guidelines here:
rcophth.ac.uk/wp-content/up...
If appointment are remote it might mean scan still done in clinic but then doctor phones after reviewing scan.
I only know this as been seeing NHS retinologist for 3 years about something else.
There can be a form that the nurse, or maybe now health care assistant, asks you to fill in when they do visual acuity and occular pressure checks.
The form asks you to list:
(i) current eye symptoms
(ii ) symptoms elsewhere
(iii) Anything else you want to say
As it is next to impossible to do this for all my dymptoms in short time available I now prepare beforehand a sheet to give them. In section (iii), I include a list of questions and concerns I have. It can take some persuading but eventually, my sheet gets stapled to their form, and it is acknowledged that it provides better quality, more thought-out responses.
Along with that, they always ask for a prescription list and allergy information. So I pre prepare this also. Sometimes, the system is down or not assessable if in another building, so they don't know drug allergies you have already told them about.
Bear in mind if they phone you you will not be able to see evidence of what they are talking about. That is your scan results, that in the past they might have used in a face to face appointment to explain something.
The telephone call can be out the blue, mine have been in the early evening around meal time. News can be bad, as otherwise a letter might be used. It can discuss diagnosis, treatment, time of next scan and other referrals. These are the things I think metrics are based on.
Any patient specific things about underlying UCTD and its impact on the normal protocol they follow I have to proactively cover myself. Drawing attention to concerns I have. This could be like discussing the impact of dry eye on procedures, adverse reactions to things like contrast and even eye drops, increased likelihood of sympyoms being due to inflammation, etc etc.
Routes they use do not check everything that is relevant, but as these are set by management, and are in textbooks - they don't always want to listen..
I find that some doctors engage others just come over stern and formal and can be unpleasant so it is hard to get anywhere. Metrics may drive things now so patient specific things are more difficult for them to factor in.
In the Lupus Encycleopedia it also recommends doing the 'Amsler Grid' at home monthly.
Hi Pangine, like others on here, I have been recommended annual checks. I suppose they might be needed more often if you have certain risk factors, like previous eye problems, or long-term hydroxy use. Hope this helps!
Hi Pangine, yes, i have been told the same by specsavers. They said, as I have a yearly appt at the hospital, its no longer necessary to have an eye test with them unless i start to have any problems, ie headache/blurry eyes. when I thought about it, they are actually repeating the same test that the hospital does.
I was told to go opticians for check every year but last 2 years been sent to hospital for eyes checked think this is due to being on hydroxy for longer than 10 years. Maybe it depends on NHS location?
unfortunately that how it is nowadays. I haven’t seen one via my hospital for years although I was told annually as well I have to use local opticians for my annual check up.
No one care anymore, going to the Rheumatologist for check up is also a waste of time , they don’t listen or even do blood tests anymore just assume what they thing is happening to my body so I just give up
Hi
I have been on Hydroxychloroquine since 2015. Up until this year, Rheumi has been happy for me to see my own optician annually. She is quite adamant that it is yearly. Last week I had a call from Rheumatology dept saying that they wanted me to see the hospital ophthalmologist and reiterated that checks must be annually.
Kelbol1 may be right as I know that eye health is a big thing in my regional NHS.
Good luck🤗🥰
Hi.Yes at my last hospital check in January they told me that they won't be doing them from now on and will be contacting me re being seen by someone in the " community" whoever that is. My recent opticians glasses check was pretty thorough so not worrying too much .
My rheumatologist checks each time I see him if I have had my eyes tested. My opthamologist sees me every six months, more often if there is a problem.
Many thanks for all your comments. It seems the medical advice for those on hydroxychloroquine is an eye screen every year, hospitals are now doing telephone consultations and NHS opticians are now only offering eye checks every two years. Confusing. Your comments have really helped me. I have decided to pay for a private optician check every second year, especially as the optician quietly mentioned in passing as I left the room that I was showing early signs of glaucoma. Another can of worms.
Im on the same dose. My consultant told me when i started them just over a year ago to have an annual sight test at the opticians and I will have a hospital sight test every 5 years.
I saw my optician the day before i started so i had a starting point. He saw me recently after i had been on them for 12 months and no change. He will test me annually but if i notice any changes to let him know
Tests 
Hydroxychloroquine 
Problem with my eyes
Hydroxychloroquine
blood tests 
