Discontinuing hydroxychloroquine (or not)

[Paloma25]

I have fairly mild SLE and have stopped hydroxychloroquine because of some unrelated retinal damage caused by sepsis. I find I am tired all the time, more sun sensitive than ever, and frequently get oral ulcers. I'm not sure whether to risk more eye damage by returning to hydroxychloroquine or to risk more lupus damage without it. My physicians say the choice is mine. Does anyone else have experience with a problem like this?

[BK47]

oh dear it’s so difficult to balance the risks. I tried reducing Hydroxychloroquine with a view to coming off it but I got so much worse after a few weeks that I returned to my normal dose. I’m sorry I can’t give useful advice but if your rheumatologist says you need to stay on it then I would trust him/her. Good luck x

[Turquoise-1]

Hi Paloma25

I am not expert in this but I had an awful adverse reaction to Hydroxychloroquine so was told to stop taking it immediately by my Rheumatologist, no tapering .

It did not suit me at all - I will never take it again! Awful stuff in my opinion….

There are many alternatives, personally I wouldn’t risk further damage to your eyes but ask your Rheumatologist what else you could try.

As a former Dental Nurse I recommend Corsodyl for mouth ulcers; It can cause staining so dilute it a little & avoid using everyday. Difflam spray is also effective as is warm, salty water and excellent oral hygiene. See a dentist also as they can prescribe various products & specific meds if required.

Good luck to you 🌸

[Paloma25 in reply to Turquoise-1]

Thanks very much, Turquoise, for your advice and suggestions.

[prescilla]

I am in a similar situation to you as the medication was damaging my eyesight. Been off it for a while , take soluble prednisolone for mouth ulcers which helps a lot. Like you get very tired but in the fortunate position as early retired that I can sleep in the day. I'm on steroids now for polymyelgae so not sure if it is helping the Lupus aches but definitely feeling much better.

[JGBH in reply to prescilla]

Hello Priscilla, May I ask you what trouble was caused to your eyes while taking Hydroxychloroquine ? This was added to my treatment for RA and I have noticed a decrease in the sharpness of eyesight. Best wishes.

[prescilla in reply to JGBH]

Had to have annual eye test as recommended when on this drug. Optician picked up a problem and referred me to hospital. They said a macular problem so recommended I stopped taking hydroxochloraqin. Recent eye test I was told any damage had gone which was great news.

[JGBH in reply to prescilla]

Thank for replying. I always have annual eye checkups because I have uveitis in the left eye. My latest was in December last year. My vision has deteriorated. It’s getting worse so perhaps I will make an appointment to see my optician again very soon.

Was your vision decreasing? Or what other symptoms did you get?

[prescilla in reply to JGBH]

Didn't notice anything specific but do have the beginning of cataracts so could have been a gradual thing. Good luck.

[JGBH in reply to prescilla]

Thank you. Take care.

[Lex54 in reply to JGBH]

Hi

I have been on Hydroxychloriquine for 10 yrs approximately and have my eyes checked every 6 months . I'm on maximum dose recommended 2 x 200mg per day as well as Sulfasalazine and Methotrexate. My eyes are dry sometimes but never had a problem. I use prescription Hyco San eye drops to lubricate my eyes if needed. I also am rubbish at drinking water which didn't help! I would say I'm aware if the dose is too high that it is toxic to your retina but I understand this has been recognised over the years and that's why doses are much reduced than prescribed previously. I am aware that everyone is different and some predisposed to degenerative eyesight. My mother and Aunt had Macular degeneration and this apparently is common in my family. Thankfully though at 65yrs don't have this problem only old age eyesight 😃Good luck !

[JGBH in reply to Lex54]

Thank you for your input. I have RA, Sjogren’s and uveitis in left eye. So my eyes are very dry and I use many drops throughout the day and Xailin night ointment. However my vision isn’t sharp. I see the optician once a year. Were you advised to see the optician twice a year? I was not advised to do so by my consultant rheumatologist. I will contact m’y optician. Getting old is no fun especially when one has health issues.

[AimeeA in reply to JGBH]

If you have problems with your eyes you really need to be seeing an opthamaologist (not just an optomestrist) at least twice a year. Once a year is not enough. There are many things they can treat if caught early, but can't if you go too long.

My understanding is that when on hydroxychloroquine, you definitely need to go twice a year at minimum so they can look for any early eye changes that can be reverse.

[JGBH in reply to AimeeA]

Thank you so much for your input. I will contact my consultant for a proper church up. One would think the rheumatologist would recommend such precautions.

[AimeeA in reply to JGBH]

One other thing, lupus is a strange disease that impacts so many other systems in the body, and it is easy to fall into the abyss between doctor's different specialties. So a GP or rheumatologist will not be an expert on your eyes or kidneys or heart etc.

So if you discover a different system is impacted beyond what a rheumatologist treats (in your case eyes due to sjogrens and uveitis), you really need to see an opthamologist for eye treatments since they are the ones with the special knowledge of drugs and treatments for eyes.

A rheumy is a specialist in arthritis so can treat your lupus in general and the arthritis joint problems, but they are not specialists in eye issues, or kidneys, or heart, or brain. So if you suspect problems in other systems, go to the specialist for that system.

I've managed my lupus very successfully by doing that and recognizing that there is no such thing as one stop shopping when it comes to doctors when you have lupus. If any other organ system gets involved, you need to see a specialist. That might be a cardiologists, neurologist, opthamalogist, dermatologist, endocrinologist, nephrologist etc. depending on the symptoms you are experiencing and the organ system involved.

Don't hesitate to ask for a referral if you're not sure what to do.

[JGBH in reply to AimeeA]

I don’t have lupus but RA, so slightly different but very similar in way they are both systematic diseases affecting joints and organs of the body.

I notice you are in the US, so medics work differently than in the UK in that usually a consultant should inform his/her parents about side effects of drugs they prescribe. I was only warned about avoiding the sun. I do most of the time. I suppose you pay to see a medical professional in the US. At the moment it is still free here but not sure it will carry on much longer.

Indeed I am aware many organs can be affected by lupus and RA. I have been seeing an ophthalmologist for a very long time, since I was diagnosed with Uveitis. I used to go every 6 months and more often if I had any problems but since Covid I have only seen him once and that was before I was prescribed hydroxychloroquine. I will contact his secretary to make an appointment. However I have so many Hospital appointments… I spend so much time there.

I have an appointment to go to the cardiology clinic next Thursday. I did have to ask my GP to refer me. Having been diagnosed with RA 38 years ago (and I was very I’ll indeed, spending nearly a year in hospital) and knowing that RA people are candidates for strokes and/or heart attacks it is most important to have relevant checkups. Of course one can pay to go privately. Although they tend to wait too long in the UK, not acting until one has problems. I am 77 now so getting older is certainly an added factor.

Best wishes for continued well maintained health.

[CavendishCool]

Hi there. When I was diagnosed with and luckily "mild" (Rheumatologist's description) 2 years ago and asked the question do I have to take anything the answer was a "No" you don't have to do anything, but this is what is certain to happen - organ damage, likely to be kidneys and then lucky dip of who knows where next. I am fortunate that my optician checks the affects of eye damage with Hydroxychloroquine every 6 months, so far so good. I hate Hydroxychloroquine, fellow Lupus sufferers tell me it's rubbish, will make my skin sensitive, which it does, but I'm not allowed out in it anyway because before Lupus my joints ached and swelled up so much probably due to undiagnosed Lupus. Thinking about replying to this request, it transpires that not only do I hate Hydroxychloroquine, but I hate having Lupus, but there's no denying it, I've got it, so I'm still coming to acceptance, which knowing me will take forever. This of course doesn't answer your request, but we are all such indviduals, all individually affected by this auto-immune THING. My GP, laughingly said autoimmune illnesses look like they're going to be the "illness" of the future so you could think of yourself as a trail blazer and thanks for giving me so much knowledge about it. To which I replied "It's a pleasure - NOT!" Moral of long winded ramble - "Each to his own!" Just going off to do the job I love today (so far still able to do it) being a yoga teacher and bending some old ladies about (their description, not mine) Namaste 🙏. Happy International Yoga Day too 🙏🙏🧘‍♀️.

[Lex54 in reply to CavendishCool]

I agree I have been diagnosed with RA and would love to attend Yoga as apparently helps lots. Certainly feel better after exercise! Yes I don't like any medication but it needed to allow me to continue to work full time and enjoy life. Keep popping the pills advised and moving and despite the side effects it's better than being unable to move without pain !

[Kelbol1]

I was taken off hydroxy when they started me on mycophenolate because I had been on it for 7 years I also was back to being tired all the time and ulcers - I went back and they put me back on but halved dose which did work for me I get my eyes checked regularly- could you not go back on to it but go for more regular check ups on eyes? Or is there no other drug they will try you on? I also notice if I forget my vitamin D I am also tired - have you had your levels for that checked? Good luck with what you decide x

[Paloma25 in reply to Kelbol1]

Thanks very much for your thoughts. I do sometimes forget my vitamin D, so I will watch that more carefully. Perhaps resuming my yoga practice would also help...

[Lex54 in reply to Paloma25]

I find Vit D and FolicAcid are great . If I miss those I notice a significant deterioration in my joints and tiredness.

[purplesnowflake]

I had a major allergic reaction tohydroxychloroquine so was put on mepacrine as an alternative which has kept things steady. This doesn't have the eye related issues though it isn't strictly a lupus drug but they discovered it can help.It maybe worth discussing with them the alternative options because if your condition is flaring you need something to help.

[Paloma25 in reply to purplesnowflake]

Thank you. The comments here remind me that just sitting out a flare and worrying is likely not the best option. I'll get in touch with my rheumatologist.

[purplesnowflake]

Good luck

[MJVFF]

Hi there, I also had a very bad reaction to the Hydroxychloroquine, my left eye lost sight for less than a minute, it was terrifying. Then I had flashes in my eyes. I told my rheumatologist that I discontinued it after 4 days. However the symptoms have never gone, very sticky stuff coming out of both eyes, stuck to the eyeballs, so visual disturbances and eyes losing sharpness, so I really want to get the honey like gunk off my eyeballs. I wouldn't take it if I were you but I was never given anything other to replace it.

[StriatedCaracara in reply to MJVFF]

I have lost vision temporarily and had light flashes on moving, these can be due to inflammation, like Giant Cell Arthritis and inflammation of the Optic Nerve. As we know, it's complicated - lupus can cause serious eye issues too.

I was treated with steroid, and then because of flare hydroxychloroquine needed to be increased, and these eye symptoms have now gone.

Also, steroid can affect eyes, really gave me incredible closed eye firework displays, concentric circles and then lines of dashes, and worsened night vision when on high dose.

When I tappered off eyes improved. I was worried about getting cataracts when on high dose steroid.

I have a choroidal lesion, which I may have had since birth. My eye doctor and my rheumatologist both want me to stay on hydroxychloroquine, but monitoring change of any irregularity is important so they do regular OCT to measure the lesion. It has remained stable.

I found this guidance for GPs on Lupus-related eye conditions (there are pages on other organs too, and what GPs can watch out for, nearby to this on Lupus UK website):

lupusuk.org.uk/medical/lupu...

Hope this helps. Take care.

[Lex54 in reply to MJVFF]

Oh dear ! Sounds more like an eye infection as well. Take it you have had your optici's check this . Good luck !

[Wendy39]

here’s some official information on Hydroxychloroquine and the eye damage it can cause. From the Macular Society. Your doctor should be able to offer you an alternative treatment. Unfortunately if lupus is left untreated then damage can accrue, to various organs etc. I hope you can have a chat with your doctor and find a new treatment plan.

macularsociety.org/media/kc...

[Paloma25 in reply to Wendy39]

Thanks very much for the pamphlet, Wendy. I found it very helpful. The retinologist said it was all right to go back on hydroxychloroquine if I was having flares but seemed to imply that it would be better not to. I'll check with all the doctors again. I wish there were a safer first-line medicine for us.

[Cal66]

Hi Paloma25I also have retinal damage. I have Toxic retinitis, which is directly due to Hydroxychloroquine. As soon as I went for Field tests a consultant optometrist rang me up to tell me to stop Hydroxychloroquine immediately and that I will need to have further tests to confirm his diagnosis, I then had a call from my rheumatologist to tell me to also stop Hydroxychloroquine. I now have permanent damage, which is progressing.

I what I am saying is I don't think it wise to consider going back on Hydroxychloroquine, but as he said it is your decision to make, by the way I also have unstable sle and get depo injections to help with Inflammation and pain. Good luck 🦋

[Djlr]

Definitely don’t RESTART HYDROXYCHLOROQUINE unless your EYE DR (ophthalmologist) & RHEUMATOLOGIST say it is OK.

Yes- all those I know who had to stop it because of all EYE toxicity damage or stomach issues, have a much worst time with their lupus symptoms.

Please talk with your rheumatologist about how to handle these symptoms and treat them each one symptomatically.

For mouth sores – L lysine 1000 mg TABLETS “can help” as you begin to feel one coming - take immediately. You made a 2nd dose if it doesn’t stop & for a few days.

healthfully.com/how-to-take...

Please CONFER w/your Rheumatologist for HELP W/all SYMPTOMS and they can REFER you to a specialist/Dr for any major areas of concern.

Wishing you well on your journey- lupus is always a challenge- keep dr in the Loop. 💜

[AimeeA]

If you have mild SLE, as I did, and have any negative signs in your eyes, I would say no to Plaquenil. I consider my vision critical to my happiness, and would not take anything that I have been told was damaging my eyes.

There are other treatments and remedies you can follow for lupus. I started on Plaquenil but went off it after my flares calmed down, and because I wasn't comfortable with the eye risk if its taken long term.

I've been able to manage my lupus very successfully by carefully figuring out what my triggers were and avoiding them with lifestyle changes. I avoid the sun, make rest and stress reduction a top priority, eat well, take vitamins, and use non steroidal anti inflammatories like meloxicam to manage joint pain, and over the counter eye drop to manage dry eye.

The fact that the doctor says its optional means you don't really need it and can find other ways to manage your lupus. It's often trial and error for people to figure out how to best manage their lupus while obtaining the fewest side effects from drugs.

If you've had retina damage, see an opthamalogist who specializes in retinas, and get exams at least twice a year. There are many problems they can head off, but once the damage passes a critical point, they can't go back and fix it. So I take my eye doctor appts very seriously and listen to my opthamalogist.

One suggestion: many lupus patients have big trouble with sulfites. Try going off wine (which always has sulfites) and see if you don't feel better, less tired, no mouth ulcers. Wine was literally causing my vasculitis, and once I went off it, it cleared right up and I was far less tired and achy too. If you want a drink, switch to a clear liquor like vodka that has fewer additives. The yeast in beer can also be a problem for some people with lupus.