You may remember back in July, I mentioned that I was to have test for possible Toxic Retinitis. I saw a Consultant from the Macular department on Friday, where my worst fears were confirmed. I definitely do have Toxic Retinitis as a result of long term use of Hydroxichloroquin. I am still waiting for the results of another test that I also had on Friday and a letter that I'm hoping will give me more information, then I must inform the DVLA. I hope that I can continue to drive, if not I will be trapped in the house.
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Cal66
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That really is a worst nightmare! You must have been so anxious all through this time. Can't say how saddening it is to read this. Please let us know about your driving result. What a terribly upsetting time.
Well he said that I should pass the dvla fields test as my central vision appears to be ok, but not looking forward to possibly not being able to drive for at least 3-4 months till they decide, as my mum can't manage my wheelchair on buses & trains like she used do years ago before I got a car.
I am trying to keep positive, but finding it hard & trying to not think about as I stupidly keep wanting to cry.
It's not stupid at all to want to/ or to cry about all this. It's just awful and you have such a long wait and a life-changing experience to somehow find a way to adjust to.
I wonder that sometimes positivity is over-rated. Perhaps we need to feel what we feel when we feel it. Then worry about that positive thing some other day.
I know what you mean by positivity, but I was watching the news last night about 2 little sisters with Battens disease and I was so pleased to hear that all children with it is going to get this new drug to help them, so in some ways that is worse and 3 male friends & who are all in early 40's have all been told that they have heart problems, so I suppose I should have something to be thankful for as my heart problems has settled.
Adjusting to this big life change is a challenge but you can do it! Yes there is always worse....like the 3 little sisters you mentioned. When I'm having a bad day I try to remind myself to think of a neighbour who is almost blind now and has a companion dog. She never complains and seems to manage it all. She loves to swim with us and have coffee afterwards to enjoy the wonderful conversations we have! We try to solvr all the world problems but it's slow progress!
So sorry to hear that I literally saw my consultant yesterday and they said they are testing me for it now as a precaution, I've been on hydroxychloroquine for 15 years they usually only test if there are symptoms but a new legislation came out around 18 months ago that means everyone that's been on hydroxychloroquine for 5 years should be tested......still sloppy practice in my opinion 18 months later after new legislation I'm getting tested ...very sloppy
Oh I am so very sorry Cal. I hope that you will still be able to drive. It must be terribly upsetting for you. Can I ask please what tests you had that led to diagnosis? Take care of yourself x
I had to look at a board with 1 eye covered & press a button every time a light came on, this was repeated a few weeks later, those were called Field Tests.I assume that my diagnosis was made from them. On Friday morning before I saw the Consultant I had a another test, where I had electrodes attached to my lower lids, others attached to my face, I had to watch another screen with moving lights, but I don't know what the results of this test is yet and that is why I don't exactly know what to do or say to the Dvla.
Thank you for that. I tested in the first test and had no lower left peripheral vision yet the Ophthalmologist did not even want to see me. I do hope things get explained to you, it’s so hard being kept in the dark.
Very sorry to hear your news, I do hope that you will have better news about driving after an assessment but understand how daunting this must be in the meantime. Can I ask what has been your daily dose of hydroxychloroquine? With so much sympathy....and my very best Lily
Hi Cal66. Hope you have good news re driving. It’s a concern we all face during testing, waiting results. I too would be lost without my car. Loss of independence and freedom is so hard to think about. Some charities have access to mobility taxis door to door and shopping stores and most National Trust locations have free mobility vehicles but you may need to book in advance. Hope it’s good news. Big hugs xx
The problems will be when my mum & I can't decide to go off to somewhere like Leeds for a weekend shopping trip or Metro centre. Places like that will be impossible as my mum doesn't drive and is now to old to pass a test or get a license, she relies on me to do the driving as my sister said she can't just drop everything to run after us, as she also has Fibro & a has a little boy with ADHD and so our independence will be none existing.
I went to the options 2 years ago for a checkup. I was told that apart from needing to get distance glasses & slightly stronger lens for reading everything was normal. I had been due to see them in May, but had Pip & ESA assessments & in June my Rhuematologist said everyone on Hydroxychloroquine were now to attend Eye Infirmary for eye tests because of some affect it can have on eyes, but that was all I was told.
I’m very sorry Cal66 that you have encountered this serious problem with your eyesight and pray that something can be done to enable you to continue driving as it’s obviously a hobby as well as a pleasure which enables you to get out and about.
I just started low dose Hydroxychloroquine last week. How long have you been on it?
So many trade offs using meds. That’s why I kept putting it off. I was just hoping to get enough relief so it improved my husband’s quality of life too. I’m wishing you the best.
Thank you. I know that when I Ist took them it was about 15 years ago, but I have been on & off them all the time, sometimes off them for about 6 months or more, so I have had breaks from them. What possibly makes things worse is that 24 years ago I had a blood clot in my left eye & at the time I lost all vision in it. Slowly it started to recover with only partial peripheral vision lost, so I'm hoping that I may be as lucky as before
Hi Cal66, I am so very sorry you are experiencing this. Here where I live we are screened for macular changes every 6 month by an eye MD while on hydroxy, and if we have any reportable changes we make a same day appointment. Why did they make you wait 2 months for an appointment after you started having problems? Eyes are not something to fool with. I know a lot of us fret about taking hydroxy but eye side effects are extremely rare. I hope whatever is causing your problem is fixable. Prayers for them to get to the bottom of it soon! Take good care and hugs from me to you. Nan
Thank you. You said that where you come from I assume your from America. Could you tell me how long ago it was discovered that Hydroxichloriquine affects eye more than they had at 1st thought? I know that it was America that alerted other countries about it, but i need to know how long ago it was.
Thanks. I hope that you don't mind me asking about it.
Hi Cal66, No, that’s great that we are having this conversation. I love hearing about what is happening over there. I know people on this website have been saying that their rheumatologists have been decreasing their doses for awhile. I am taking 400 mg of hydroxy per day now. I see my rheumatologist every 3-6 months and he just told me the new recommendation is for not more than 400 mg per day. It used to be 6.5 mg/kg daily. It has a very long half life so you can stop it for several weeks and still have it in your system. Both my rheumatologist and my opthamologist are older and have been in practice for more than 35 years each. My rheumatologist says he’s never seen macular problems in any of his patients, and my eye MD says he has only seen it twice and they were both on greater than 1600 mg daily. Part of the problem I can see is the patients are not getting baseline Ophthalmology screening, and they are not having follow ups every 3 to 6 months to make sure that they don’t have any macular changes. There is a telltale bulls eye sign on the macula when hydroxychloroquine is affecting it or causing toxicity. They have to dilate your eyes and look at your macula in order to see it though. The literature that I’m seeing here in the States still says that the dosage is still 6.5 mg per kilogram daily not to exceed 600 mg a day. I know for myself hydroxychloroquine has been the most miraculous drug for me. I was having severe joint pain, muscle weakness, rashes, and severe fatigue. It has helped all those, especially the joint pain and muscle weakness. I hope that they can figure out what is going on with your eyes soon. That is not something you want to put off dealing with. Take care, and thank you for letting us know what’s going on with you. XO Nan
I’m in Canada and taking 400mg a day. Yesterday when I saw my rheum he recommended I switch to taking it only 5 days a week as a means of avoiding side effects.
Hi Cal66. I am very sorry to hear of your retinal problem. The toxic effect of hydroxychloroquine on the retina is very unlikely before 5 years of being on therapy. The recommendation for screening for retinal toxicity is that someone initiated on treatment should have a baseline eye examination and then yearly examination from 5 years of therapy. It only remains a recommendation in the UK and unless this converts to a mandate, there is no obligation on the part of the commissioners who pay for all encounters within the NHS to fund it. An earlier posting stated that the requirement for screening for hydroxychloroquine toxicity is legislated for; unfortunately this is not the case. However, anyone on hydroxychloroquine for longer than 5 years should ask their prescriber about screening and even if no systematic screening programme is in place, you can be referred to an ophthalmologist for an examination.
The current recommendation in hydroxychloroquine dosage terms is not to exceed 5mg/kg body weight in order to reduce the likelihood of retinal toxicity. The effect of hydroxychloroquine on the macula (i.e. the centre of the retina where visual function is most critical) is irreversible but if discovered early through screening, further declines in visual function can be avoided by cessation of hydroxychloroquine thereapy, which will be unfortunate as it is otherwise a well tolerated and useful drug for lupus as well as many other rheumatological conditions.
The screening tests for hydroxychloroquine macular toxicity are non-invasive and largely are a sequence of scans and pictures of the eyes as well as a visual field test (where one looks at a screen and respond when a weak light flashes).
I hope this helps to clarify some of the issues raised in this thread.
If your own personal symptoms are relatively mild then stopping hydroxychloroquine can slow and eventually halt any progression. Hydroxychloroquine accumulates within the retinal cells so stopping does not immediately halt progession of toxicity but at least it stops further accumulation of the drug.
In order to drive a car, one needs to read a number plate at 20m (approximately 6/12 vision on the Snellen acuity chart - an optician will be able to tell you whether you have this and you only need to achieve this with one eye) as well as a relatively full visual field, i.e. no defects identified within 120x40 degrees. I know this sounds quite technical but the ophthalmologist who saw you should have been able to explain this to you. Otherwise, consult an optician who can carry out these tests for which for a small fee and they should then be able to advise you as to whether your driving ability will be compromised.
Thank you for the information and the time it must have taken you quite a while.
I have been on & of Hydroxichloroquin for over 15 years, sometimes with 6 months or so breaks. I attended my regular Opticians only 2 years ago & was only told that now also need distance glasses for driving, but other than that everything was ok.
I have had 2 visual fields test, 1 in July and the other in August.
Last Friday I then had another type of test in which I was given anaesthetic eye drops, 2 tiny gold electrodes were put on each bottom lids & I had to watch I think a red light whist some Quigley lines were jumping around. I was running late & had to go see straight in to see the Consultant, he then he examined my eyes & I had problems moving about them much because of anaesthetic & he diagnosed Toxic Retinitis straight away without knowing the results of this last test. So I don't know what to think, because he said I am very lucky to not have any problems with my central vision, but on looking at information about it, they all state prominent bull eyes & problems with Central vision, but I don't have that & so I am very confused. I have come to the conclusion that until I get all my test results and a letter of confirmation I am unable to really tell the DVLA much & may be causing myself more problems doing so, I don't know if I am doing right thing or not, but I'm not wanting to jump the gun and shoot myself in the foot.
That is terrible about your eye. I myself had a blood clot 24 years ago, lost all vision in left eye, but I surprised everyone that most of my vision came back, but don't think that I will be as lucky again. However, I thought that Methotrexate could affect eyes & cause other dangerous problems, I feel too frightened now to try anything else other Tramadol, for pain, which I take 4x a day.
I think that I may have a glimmer of hope that things aren't as bad as I was told, I received an appointment today for a repeat Visual Fields test, so I'm hoping that is a positive sign, well you do have to try, don't you
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