Hydroxychloroquine causing retinal damage

My husband has RA and at his Rheumatologist's insistence agreed to take Hydroxychloroquine as he cannot take the usual type DMARD drugs due to chronic lung disease and the suppression they would cause of him immune system. After six weeks on Hydroxychloroquine he got hundreds of black floaters in his eye, with intermittent flashes of light. We went to Addenbrooke's Hospital Casualty where the Casualty Doctor felt he'd had a retinal bleed due to the drug and were referred to the Eye Clinic as an emergency. The little madam of a Registrar threw her toys out of the pram and was violently abusive to my husband for fifteen minutes, only vaguely looking at his eye for less than five minutes. She claimed my husband's eye condition was due to his age, and not Hydroxychloroquine, of which retinal damage is a well-known side effect. My husband has continued to get more flashes and floaters. His right eye is pretty useless now. His Rheumatologist has refused to see him. He no longer trusts any of the medical people. We are looking for a compensation lawyer. Has anyone else had similar trouble with drugs for RA causing another disability as a side effect, and the medical people running for the hills? It is difficult for us to know where to find any help now.

21 Replies

oldestnewest
  • I'm on hydroxychloroquine and during an eye exam found. "something" I was sent to a specialist and was told it was fine and hydroxychloroquine had to be taken for at least 5 years before it could cause any damage at all. Having looked at this it does indeed seem the case, I'm now back taking it along with my other mrds.

  • How appalling, you must be devastated! I just wrote a long'ish reply that has vanished, so just a few thoughts..

    Have you got an appointment with an ophthalmic surgeon? I know with diabetic retinopathy that early laser treatment can help, so maybe this would be the same. Or are you able to travel to the Moorfields hospital emergency eye clinic in London. I can understand that your OH may not want to have anything to do with doctors, but if there's a chance of improving his vision it could be worth it? My mother had macular degeneration and had treatment from a doctor she liked at the Spire in Trumpington - but it did cost rather a lot.

    The other thing is whether you have made contact with the PALs service at Addenbrokes to start a complaint. I know nothing about compensation lawyers, so can't offer any thoughts. Just that I think it will be hard, as a quick search shows the documented cases of hydroxy causing retinal damage being related to slow onset damage, and usually with long term use. And more usually with retinal deposits rather than bleeds. So this will be a pretty unique case I imagine. But good luck.

  • Hi helixhelix, I got problems with retinal haemorrhages in the 1980's before they could do MRI Scans, when Addenbrookes' carried out a procedure called a myelogram which involved injecting radio opaque dye directly round my spinal cord, so that they could see to take X-rays where nerves were trapped in my back. As soon as the Radiologist injected the dye into my spine, it began to "snow" black specks in my visual fields. I told him but he carried on regardless. I lost a lot of my sight, my left eye is virtually blind. Addenbrooke's denied it. I can't see to drive now. I've had very good treatment and care from Moorefields Eye Hospital in London, and although it is a long way, we are going to seek their help for my husband's eye as well, as you suggest. We've tried asking to see two or three Consultant Opthalmologists locally, but no one will see us, because it is the result of the drug. His Rheumatologist wont see him either, so he is in a lot of pain with his RA. The medical people are always on TV boasting when they have new innovations that work, but all the mistakes are ignored and pushed to the back of the queue! No one hears about us lot who have been injured by the NHS!

  • I really would prefer a different health system. The sort of abuse you describe would not be tolerated in any other profession. Even when negligence is proved, medical practitioners are never struck off.

    You see a lot of lawyers advertising "no win no fee" work. Also, there are two or three in London who feature regularly in the press following successful litigation. I'll look them up and come back to you.

    The first step a lawyer will take is to get a report from an expert medical witness, who will be a Consultant eye specialist. Meanwhile, I would press on with going to Moorfields.

    I was nervous about taking Hydroxy at my age (last year, age 67). I was not offered an eye test beforehand, as I should have been. Was your husband offered one beforehand? I feel this is key: if he had an eye test first and his retina was OK, it is pretty clear the damage was caused by Hydroxy.

    I had had an eye test in August 2015 and my retinas were perfect. I took the Hydroxy in Feb 2016 for three weeks. I then had an eye test (privately, £22) at the same opticians and they found a blind spot on the retina. I had stopped it by then as I had a viral infection and was coughing up blood - so it is pretty powerful. The optician was disgusted that I had not been offered an eye test before taking it. He said they do tests on the NHS for people on Hydroxy all the time. He had come across retinal damage after a few months caused by Hydroxy but not three weeks but would not rule it out.

    I told the consultant in May 2016 about the retinal spot and he said it only happens after about ten years and I was on a low dose. Yes, but I am over 65 and risk rises substantially at that age. It just shows how much rheumatologists know about these drugs.

    Anyway, I had another private test during my second attempt at taking Hydroxy last August and the optician said the spot was still there but no worse. He was more hopeful that it is not caused by hydroxy but we have to keep an open mind.

  • Further to my earlier post to you, here are the names of medical negligence firms.

    Irwin Mitchell -0808 149 7236/0370 1500 100 –free initial consultation - no win no fee

    Howell Jones - 0800 037 1625 free initial consultation – no win no fee depending on case

    Bolt Burden Kemp 0203 7406 647 – also includes claims for inappropriate or delayed treatment

    Kingsley Napley (0)20 7814 1200 – free initial advice

    I have seen the first one at least win quite a number of cases and they seem to be pretty fierce. The second one has quite a reputation as well. They will all offer free initial advice. Be careful to select one with experience in your type of claim.

  • I would suggest getting a second opinion before taking any action. Flashers and floaters are usually symptoms of age related conditions such as vitreous detachment whereas my glaucoma consulatant says hydroxy doesn't usually cause problems with the retina unless taken at high doses for a long time.

  • I think the problem she has got is that she is that nobody will admit anything. She therefore needs the opinion of an expert medical witness via a solicitor and also t gather statistical evidence on hydroxychloroquine. They would obviously have seen whether there was retinal detachment by now.

  • This is so difficult for you, i cannot understand this womans reaction because whether it is the hyrox or age it certainly isnt your husbands fault!, as far as compensation is concerned i hope you get good advice but obviously you must be aware that the warnings are given to us in the leaflets etc and as such we all have to accept that if we are ruled out from the optimum medication as a lot of us are we have to go with the best compromise they can come up with and those decisions can come with consequences. I hope you get the best resolve for this genuine difficulty you are facing.

    Blessings

  • It is true that warnings are given on the leaflet but many people are forced to take these drugs by the NHS before they can progress to biologics. As regards age, I think the older you are, the greater the risk, and certainly after 65 the risk is far greater whatever the drug. It actually states on the hydroxy leaflet that the risk rises at 65+ and you need more frequent tests.

    The warning on the leaflet is no defence for negligence in prescribing.

    The eye specialist's behaviour is suspicious. These sudden reactions do not occur on account of age.

  • Hi Delicateinput, I didn't know the risk went up after you were 65 - my husband is 69. In 2014 he got the first attack of floaters and was sent to a Consultant Ophthalmologist at Moorefields and diagnosed as having retinoschisis and macular cysts. He had no further trouble but developed RA within a few months of that. He was awaiting two replacement knees for osteo-arthritis and consistently refused to go an any anti RA drugs whilst he got his surgery done, which took 18 months. My husband didn't think it wise for him to take anything in view of the immunosuppressant nature of the drugs and the fact he has chronic lung disease but the local Rheumatologist kept ringing and writing and insisting he went on medication, as did his GP, (my husband doesn't really feel his RA is bad enough to warrant it.) The Rheumatologist even wrote to the Consultant Ophthalmologist at Moorefields to see if it would affect my husband's eyes, taking the Hydroxychloroquine and was assured it wouldn't. Now as my husband says, for six weeks on Hydroxychloroquine he has had a chest infection since October necessitating four courses of antibiotics and one of steroids, and has lost his right eye! There is nothing like being treated for one illness and gaining two more in the process!The NHS still feel they do a good job doling out cheap, ineffective, old fashioned drugs with terrible side-effects.

  • My consultant did not want to give me anything initially. He said the drugs were toxic and thought I was too old (just turned 66 when I saw him) and were not likely to work in view of the six-month delay. It is well documented that RA drugs do not work very well or at all if they are not given within three months of RA onset (which is usually sudden) so your husband's rheumatologist really sounds negligent and your GP useless. After all, it is a common condition.

    They all sound at fault - the GP, the rheumatologist and the Opthalmologist but the rheumatologist is the worst one.

    I would advise you to get all your medical records from both hospitals by applying to the Medical Records Dept before saying anything about negligence. Unfortunately, in well publicised cases, NHS staff have altered records to hide negligence.

    A good source of evidence might be asking some opticians with a lot of customers (SpecSavers, Vision Express etc) how many cases of eye damage caused by hydroxychloroquine they have had, the ages of the patient and the length of treatment with hydroxychloroquine. Mine said he had come across quite a few in people who had taken it for only a few months so it is more common that is being admitted.

    The reason you were unable to claim regarding negligence over 30 years ago is that no-one had access to the NHS medical records until 1986. Mrs Thatcher passed the law giving people the right to see their records and it is since then that we have had people suing the NHS. Personally, I think a lot of staff in these cases should be struck off.

    My GP was pretty negligent in my case. I saw four in the practice and had several appts asking them to get me an earlier rheumatology appt but they forced me to go private. The private rheumatologist was as good as useless. The NHS rheumatologist was really annoyed at the delay. I was in a pretty bad way and unable to use my hands or use my shoulder. It was very confusing for him because over six months I had had a new development every week, one joint after another. I eventually found my own remedies in the form of Chinese herbal medicine and electro acupuncture. Hydroxy was good for my shoulders but it worked better with the Chinese medicine.

    The point about RA is that there are new developments all the time. There is a new treatment undergoing trials whereby an electrode is placed under the skin and involves no risk - similar to electro acupuncture and a TENS machine. Thus, it was extremely negligent, in my opinion, to risk eye damage which either cannot be put right or might take several years of trial and error treatment. Could they not have prescribed biologics in such a difficult case, I wonder.

    By the way, strange your post should come up. I was at an annual dinner dance last night and a lady on the table went blind at the dinner dance three years ago, while we were all sitting at the table. I met up with her at a lunch a while after and asked her if she had been taking any tablets and she said she had been on anti depressants following the recent death of her husband. Anti depressants are known to damage eye sight yet she was not monitored. She is around 60. She is now attending Moorfields and they are going to look into her genetic history. My take on it is that it was the anti depressants that caused the damage, which they now say is on the optic nerve. She does not want to sue so I assume she has plenty of money but I do wish more people would make complaints - what does it cost to monitor the eyes whilst taking dangerous drugs compared the catastrophic damage these drugs can cause?

    Best of luck

  • Hi Delicateinput, the Hydroxychloroquine has ruined my husband's right eye, but both of mine suffered haemorrhages in the retina when the poisonous dye was injected into my spine in 1988. It was literally within minutes of the dye being injected, that I saw the black bits floating, and they scurried round at Addenbrooke's and took care of me on 15 minute obs day and night, but would never admit it was that test and I never had money to pay for a compensation Solicitor at the time. So I have very scarred and distorted retinas, but my left eye is the worse and I can see very little with it. Had 6/6 both eyes before I went in for the spinal test. You could get an MRI in 1988. The woman in the bed opposite me had one, because she was the wife of the manager of Stansted Airport, at the time. But Addenbrooke's being the truly snobbish hospital it is, I was only the "working class skivvy of a wife to a man with lung disease and the needed mother of a five year old with cerebral palsy," so I got the much cheaper Myelogram, and my sight messed up, (you could tell they had messed up other people's sight with the myelogram.) Because it was my second serious medical accident, I have refused to have anything much else done by the NHS since, and I research all drugs before I agree to take them. I told my husband not to take the Hydroxychloroquine, but he was like you, very severely in pain with his hands and shoulders and he let the Rheumatologist persuade him. The lady with the anti-depressants is awful. I often think it would take about 300 years of careful research to find out just how safe all these drugs are on us lot here and now, and any children we might parent, but of course none of us has that sort of time frame.

    I've read a lot about RA, and it is believed that those with older onset of disease like yourself and my husband, get a milder form than the people with onset in their 30's. My husband can't take biologics because he can't have anything seriously immunosuppressant due to lung disease. Methotrexate actually causes lung damage and you have to have decent lungs for them to agree to put you on that. Many thanks for your interesting reply.

  • I hope you saw my other reply, giving you the details of lawyers dealing with medical negligence. You have to bring a claim within six years. Nowadays most of them do a "no win no fee". It would be worth speaking to one (or more than one) of them to see what they say. Back in 1988, it was very difficult to bring a claim. I remember one lady whose baby had been damaged at birth by the inappropriate use of forceps. She won her case in the high court and in the court of appeal but the doctor concerned and the NHS took it to the House of Lords and the judgment was reversed by saying "a mistake is not negligence" (which is ridiculous). She was left to bring up a mentally disabled child without a penny in compensation. In those days, NHS staff got away with doing exactly what they liked so even if you had brought a claim, you might not have won. Things are different today. I know what you mean about getting an MRI done on the NHS in those days. I had sciatica from around 1988 and I could not get a scan done until 2001 and even then it was a CT scan and I later had to pay for an MRI. Other people I know, who were favoured for no reason, got an MRI done on the NHS - and, lol, nothing was found wrong!

    RA might be milder when you are older but the symptoms I had were completely disabling - perhaps the disability was so bad because of the the specific joints, eg the hands and the shoulders. I did not have much in my knees or feet.

    I think maybe some people are taking too high a dose. It should be adjusted according to your weight (and age), not severity of the condition. The timing in getting a first appt is crucial but many people are prioritised (I think because they complain the most), which pushes others outside the three month timeframe and means the drugs will not work.

    I found Chinese herbal medicine very good but because of EU rules, I can't get any more. Electro acupuncture was also very good, especially for the hands. As I said there is a new non-drug treatment similar to electro acupuncture under trial so don't despair about the RA.

    Best of luck with Moorfields and also the lawyers.

  • Also, meant to say that the Society of Opthalmologists would be a good source of information on hydroxychloroquine and would probably be able to provide an expert medical witness. You could mention this to the solicitor.

  • May not occur on account of age, but you can get sudden retinal bleeds for all sorts of reasons at any age. My BIL nearly lost his sight after a retinal bleed while he was at the theatre...luckily my S rushed him off at the first symptoms of flashes and pushed until he was treated.

  • Was that in both eyes? The lady I referred to at the dinner dance said she suddenly got a bright light and severe pain while sitting at the dinner table and was unable to see from that moment on. This happened to both eyes so I doubt it was a retinal bleed. She has had some minor recovery: she can see shadows now but that is all. I don't think she is going to get anywhere at Moorfields as I feel the problem was the anti depressants.

    The risks from drugs does increase with age, in particular HCQ (which is stated on the leaflet) and anti-depressants (again stated on the leaflet. I know a number of people who have incurred permanent sight damage as a result of taking anti-depressants. In a sense they were lucky as they were in the 20s and 30s when taking them. In an older person, that would have been catastrophic. Would it really cost so much to monitor people, I wonder.

  • Things is one medical profession will side with another.Mainly you can't win even if proved negligence. I developed health issues after taking a drug and felt that way to blame but all said no.Thing is you only hear about side effects if they have been reported and acknowledged.

    I would ask for a second opinion

  • Hi, Fra22-57, I know. Besides my husband's eye, I've had two other serious medical accidents which led to disability - the birth of my 33 year old son left him with cerebral palsy when a midwife actually abandoned us mid delivery - we never got a penny piece. If you had slipped discs in the 1980's they would inject radio opaque dye into your spine and then take X-rays. As soon as the injection went into my spine, it began to "snow" black specs, where my retinas haemorrhaged from the procedure. I lost a got deal of my sight, one eye being virtually useless since, but no other medical people would support me to get my compensation. Moorefields Eye Hospital in London were good to me though and treated me, and made sure I got the pittance of benefits they pay in this Country. If I'm honest, I don't really feel the NHS is all that safe! We are going to ask for a second opinion.

  • I have Chloroquine retinopathy (deposits on the macula) in both eyes after taking Hydroxychloroquine Sulphate for three and a half years for RA.

    I wasn't offered an eye test at the hospital before starting on this drug, but I was going to Boots Opticians to have an annual eye exam and digital retinal photo. I didn't notice any change in my eyesight, no floaters etc, but a dark patch of pigmentation was seen on the macula on the digital retinal photo at my annual eye test. Because Boots had photos of my eyes going back several years, it was easy to assess progress.

    The optician flagged up the problem, but initially the patch was very small. At my next annual eye exam the patch was bigger and a patch was starting in the other eye.

    I went to see my consultant who said he'd never seen a case of chloroquine retinopathy in 20 years practising, until he looked at my eyes with a magnifying lense. I was sent straight up to seee a consultant opthamologist who confirmed the diagnosis. It turned out I'd been on the maximum dose Hydroxychloroquine for several years without this being adjusted down.

    I stopped taking hydroxychloroquine and was monitored for several years by opthalology at the hospital. The areas of deposit stopped growing. I consider myself lucky to have caught the condition before I lost my central vision. I have some problems with reading as I have small areas of blurring and distortion where text lines look distorted/wavy which can make reading a bit difficult and I cannot do the colour chart books (numbers comprised of coloured dots hidden in a background of dots) that I used to flash through with no problem. However, day to day I don't have major problems with my general eyesight.

    I've now been discharged by ophthalmology, but still have a digital retinal photo with my annual eye test at Boots to reassure myself that nothing is progressing. The optician can look at all my retinal photos on the computer going back over the years to compare which is very useful. Boots send you a voucher for free eye test and retinal photo once you have used them for your eye test, so it doesn't cost me anything to do this.

  • Hi, Fiona, Many thanks for your interesting reply. At least in your case they did not deny it was the Hydroxychloroquine and insist you keep taking it! My husband has the floaters and flashes but I got just the sort of problems you describe with distortion and diminution of colour vision from damage caused by a myelogram in 1988, (where they used to inject radio opaque dye into the spine to see where nerves were trapped - they don't do it now thank goodness, as they have MRI Scanners - it caused me retinal haemorrhages at the time.) They have refused to check my husband's eyes at Addenbrooke's and we are very cross since it is yet again another medical injury, (we have a 33 year old son with cerebral palsy from a midwife who ran away during my delivery, when it went wrong!)

    We have no idea how now to find another Opthalmologist or Rheumatologist for my husband. My husband did go to his Optician and have photographs of his retina taken, but the Optician had no idea whether or not they showed anything! Perhaps we'll try Boots.

  • Whatever the reason for the Registrar to behave like that it's not professional & I think I might be tempted to contact the Complaints Manager for Addenbrookes to at the least make them aware of your concern & see how they think you should proceed.

    I also think it would be prudent to determine if your husband's eye problems are due to HCQ or not before taking further steps. My concern is that unfortunately whilst it's true there is a small risk of HCQ-induced retinal toxicity it's at doses higher than we take. Nevertheless rarer but known incidences at 400mg & are usually after long term use ( >5 years), or if there's pre-existing retinal disease or maculopathy, pre-existing liver or kidney disease symptoms or aged over 60. Your husband's symptoms don't typically replicate drug related retinal toxicity. The ones you've given, flashes, floaters & loss of vision are, from what you describe, more like the ones common in those over 50 & which are due to age-related changes in the liquid that fills the inside of the eyeball. As we age the liquid (a jelly-like substance) shrinks & can pull away from the surface (this is when the flashes happen), the floaters are actually really small clumps of protein in the liquid (the vitreous) & they can seem as though there are many. It's more common in those who have myopia & no treatment's needed other than maybe wearing either sunglasses or a dark lense in prescription glasses in bright sunlight. Sometimes in rare cases though it can lead to vision loss, first noticed as like a curtain being drawn from one side or a loss of sharpness of vision,p. This is an indication of retinal detachment.... caught early enough it's treatable. But this isn't HCQ related.

    Ocular/retinal toxicity or retinopathy as I understand it by comparison happens over a long period not suddenly. The pigment in the macula of the retina changes & so alters vision, more of a blurring & distortion of objects, & also reduced colour vision, colours become less vivid. When you have an eye exam these changes can be seen by the optometrist or ophthalmologist before we're even aware they're so subtle. With retinopathy what's seen is a change on both sides in the retinal pigment cell layer of the macula, what's more commonly known as a bull’s-eye appearance. This is a late finding however & too late for screening to be useful. So if the Registrar didn't see these obvious tell-tale signs in her examination then I guess this is why she concluded it was age related. Just why she'd react so awfully though I don't know, but I do a think you should at least make the phone call to the Complaints manager, explain what happened so the reaction of the Registrar is logged, he or she will then ask you how you'd like to proceed, informally or formally. My h has done this with success, he was able to discuss the issue with the Specialists involved in an informal meeting & the issue was resolved & an apology received.

    According to guidelines your husband should have had an eye exam before starting HCQ so there was a baseline to compare against future eye exams. I take it he had one?

    I do hope this is all a misunderstanding & your husband doesn't have an increase in eye problems though I can really understand how frightening it can be having been in a similar position myself. I'd be seeking out another Rheumy too, if his won't see him, though quite why is beyond my understanding! Having RD & chest problems he needs a Rheumy who has some understanding of the two, or one who's willing to treat alongside his thoracic Specialist.

You may also like...