I have been taking hydroxychloroquine 400mg for 16 years for Lupus management. This is currently my only treatment, though I have previously had several years of low dose prednisone.
I have had a large gap between appointments as they were not being offered, but had an appointment this week. I was told that there is now thought to be a much higher risk of permanent sight damage in long term use so my dose is being immediately halved.
I am really worried, I have been looking up the sight issues and they are very frightening, I don’t know why the change wasn’t made earlier and feel I should have been made aware if the risk is now higher. I am also really worried about my Lupus issues not being managed by the lower dose and what this could lead to.
Is lowering the dose enough to reduce the risk or should I try to stop taking it altogether? Would this make my symptoms unmanageable again like they were before I started treatment?
Is anyone in a similar position?
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Leeena
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I’ve been on hydroxychloroquine (mostly at 400mg) for about 15 years and yes you are right appointments are like hens teeth. I was always told to make sure I had annual eye tests and high street opticians can now do OCT scans which would show any damage.
In my area lupus patients who’ve taken HCQ for a long time are now getting some very high tech annual eye scans on the NHS, but at a private hospital. There is now much more recognition of the possibility of eye damage. I’d suggest you chase this up with either your consultant or your GP to see if this service exists in your area. In the meantime you can see a high street optician. I’ve had eye surgery for a macular hole, so I’m really conscious of looking after my vision. One thing you could do, as suggested by my optician, is to do a weekly Amsler grid test. (Just Google).
I was told the sort of OCT that is done is more specialised, and that testing was needed after 5 years.
The Amsler grid test is also worth doing regularly and is very simple. Dr Donald Thomas includes the grid in his Lupus Encyclopedia but the grid is also available online.
I'm taking the equivalent of 300mg hydroxychloroquine a day, but in combination with a second antimalarial mepacrine. Mepacrine is currently unlicensed but hoping situation changes as not known to cause eye issues. I have found the combo works really well and means can take less hydroxychloroquine.
Hi Leeena, your concerns are valid and I understand the fears you have surrounding a possible flare. I wouldn't stop the plaquenil cold turkey. Follow the doctors suggestion and cut the dose in half. 200 mgs. Is also very effective with little to no side effects. Everyone is is different so keep up with annual eye exams! Peace and good health to you!
I started on 400mgs. 36 years ago. It was affective and no eye issues. At the time I was prednisone tapering and with that dose was able to eliminate the prednisone. Probably a year or two later I was cut back to 200 mg because my bloods were much improved. First 6 month and then annual eye exams. No retinal deposits, eyes have been fine for the previous 35 years on 200mgs. I have no stomach issues and if no one had brought up the increased photo sensitivity, I would have ascribed that to the Lupus. Who knows? Anyway, its been a godsend for me. With all the problems people get with long term steroid treatment, I am very grateful to have that terminated. Best of luck
Hi Leeena. I’m in the same situation here in the US. My doctor is reevaluating my 400mg and my January appointment will change things. I’ve had 2 surgeries and shoulder replacement so it’s not been a good 16 months to change things up. Perhaps I am sensitive because I tried 2 times to cut my dose in half but after a few days my Erythromyalgia was awful and joint pain as well. I’m on 31/2 mg of prednisone for a long while and trying also to get it to 0.
As far as eyesight goes I have them checked every 6 months here and every 12 months for the more intensive visual fields exam. I’m trusting these tests are accurately recording my vision. That being said, with the UK findings my rheumatologist here in US is also wanting me to cut in half. He admitted though that this could cause flares and I think you are indicating that as well. Here my rheumatologist gives me the facts, the advice, then it’s up to me to decide. I’m sure if I showed any major organ involvement it would not be my deciding considered as much. What all this comes down to is another change. Another life adjustment. This is always so darn difficult to manage. Trying to lead a normal life again! with changes of symptoms. Wish you the best. MM
In the early days following my lupus diagnosis I was initially started on 400mgs hydroxy daily. This helped my rash and my dermatologist decided to reduce my dose to 200mgs. Within three weeks my rash had returned with a vengeance. However instead of going back up to 400..we agreed to try 300mgs per day..this is quite tricky to do at first. This was 2017/2018 and I've been on 300mgs since ..however I'm now also on long term prednisolone and methotrexate injections.I have regular eye tests at Specsavers with the OCT test that costs £10 extra. It's worth having them checked for peace of mind and my rheumy is checking that I'm getting them done at appointments.
If I was in your position I think I would agree to the drop to 200mgs.. keep a symptom diary so you can write down any symptoms that creep back. Get eyes tested so that you know what condition your eyes are in. Then at your next rheumy appt you could negotiate for possible 300mgs per day if your symptoms have worsened.
All of my meds have potentially serious side effects and it can all be extremely stressful for us. When the doctors start rocking the boat just to cover their own backs it can be really detrimental to us..the poor patient who has to actually make the changes!! 😤
For adults, the typical starting dose is often around 400 mg per day, which may be adjusted based on weight and clinical response.
After an initial period (usually around 4-12 weeks), the dose may be reduced to a maintenance dose of 200-400 mg per dayThe usual guideline for adults is around 5 mg/kg of body weight per day, but this may vary depending on the specific condition being treated and the doctor’s clinical judgment.
This dose might be rounded to the nearest available tablet strength (e.g., 200 mg or 400 mg).
Dosage may also be influenced by factors such as renal function, liver function, age, and comorbidities.
The healthcare provider will consider these factors when determining the appropriate dosage to ensure safety and efficacy.
Patients on hydroxychloroquine require regular monitoring for side effects and effectiveness, and dosages may be adjusted accordingly.
It's essential to follow the prescribing physician's guidance on dosage, as they will tailor it to your specific needs and circumstances. If you have questions or concerns about your dosage, it’s a good idea to discuss them directly with your healthcare provider.
ive been on hydroxychloroquine for approx 12 yrs, first thing I was told was to get eyes checked because of the possibilities. Every year ive had eye check with local optician and then was referred to NHS optometry for yearly eye checks. my rheumatology appts are usually 1 a year, so metimes just a phone call. last year he wanted to reduce the hydroxychloroquine on questioning why, he said he was concerned about eye damage but didnt realise i was having eye checks at the hospital 🙄 he then said to reduce to 200mg but if i found my joints pain/fatigue got worse to go back up to 400mg.
I did as asked and found 2 months later everything began to go downhill. I decided to go back to 400mg. Today, everything is back to where I was with just occasional steriods when I have a bad flare, so far ive not had to take any other meds for lupus. I still have yearly check with optician and NHS (do have to chase NHS) my eyes are good except what comes with getting older, very small cataracts.
unfortunately we always when taking medications have to decide whether the benefit outweigh the side effects.
Hi, I've been on hydroxychloroquine for 20+ years and also had my dose reduced by half to 200mg about 18 Months ago for the same reason. I now have an annual eye scan and test by the eye hospital for people taking this medication to look for signs of retinopathy. I find my symptoms aren't managed as well on the lower dose and I need to take additional anti-inflammatory meds more frequently. I'm also at a higher risk of retinopathy as in also taking tamoxifen. Have you been offered a more detailed eye test?
ask your GP to refer you to optometry for checks as you've been on hydroxychloroquine for a long time. once you've seen them, you should then automatically get an appt every year.
I’m very sorry to hear about your experiences with Hydroxychloroquine. It is a very popular drug but highly toxic to our eyes (often underestimated?). It is not normally prescribed by GPs BTW who IMAO do not know much about lupus. It persists in one’s body for months before being broken down. 👆
This seems to be a case of medical/clinical negligence.
I posted about HCQ and optical effects myself some two years ago and am saddened that this has happened.
I’m also surprised that no one on here has referred you to this important post/thread with highly relevant responses (17 plus).
Like Marypw below I have been 9n hdroxy for 17 years. My dose was reduced a few years ago to 200mg because of the risks wh8ch are well documented. I was also advised and did get annual checks at the optician including photos of optic discs and visual field scan. Last Yr the hospital started offering checks using high tech scans, using a private provider - I am in Kent. Recent appt brought up a query so I was referred straight back to hospital. Their check was OK but they will now follow up. So please get yourself in the system for annual eye checkups via your GP, optician or hospital consultant. Changes Gome slowly so the answer is not to stop the one med that keeps you well. Best of luck with it all.
Hi Leeena, I can only speak from my own experience but I have been on 400mg Hydroxychloroquine (formerly known as Plaquenil) for a little over 40 years. I have had no problems whatsoever with my eyes. I’ve also been on prednisolone for the same amount of time and apart from some thinning of the skin I’ve suffered no other side effects. I have SLE lupus and Rheumatoid arthritis. 😊
28 years on 400mg of Hydroxychloroquine here - just reduced to 300mg a day. It's completely standard of care for SLE - as long as you have the yearly eye tests. The safe dose has recently been reduced slightly in the last year or so but as will all medicines its a risk / reward thing and the balance is different for everyone.
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