I need your thoughts on my dilemma. I have had a lupus diagnosis for 20 years now and have been on lots of different meds over the years and have had to stop they for different reasons. The most significant being Hydroxicloriquine and chloroquine which have caused retinopathy. I am now on a low dose of methotrexate and Rituximab. I have noticed that my eye sight has gradually been getting more and more blurred. I have today had an opticians appointment and have been told that my sight is now not good enough to drive. She also said that the 2 meds that I am on can also cause eye damage. I have never been told this by my rhuematologist. I’m sorry for the long post but I just don’t know what to do now. I feel so let down by all the medical people that I have been seeing over the years. Do I continue with the medication and just let my eye sight get worse and worse. Has anyone in the group experienced anything similar. I would be grateful for any advice
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littlemissp
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I am sorry to hear that littlemissp. Many of the drugs we have to take cause problems with eyes and these should be explained to us better. I myself only found out about steroid use and how they can advance the development of cataracts at the opticians this week. Did your optician refer you to the eye consultants at the hospital? If not I should ask for a referral. An optician is not a doctor and any significant problems should be referred on. x
Hi Lupime, thank you for your response. I have been under the Opthalmologist since about 2018 when the retinopathy was diagnosed. So everyone has been aware of how worried I have been since then. I feel that even if there was a slight risk of further eye damage with the drugs prescribed this should have been clearly explained to me. The dilemma of what to do next is too great.
It must be very difficult for you. I no longer drive because of dizziness and I know that that in itself is a big thing to come to terms with and can feel very isolating, particularly if like me you live in a rural area without much public transport. Perhaps the next step could be to contact both your rheumatologist and opthalmologist again in the light of what the optician said and tell them about your concerns and ask them what your options are. If it was me, I would do this by letter, copying each consultant in to the other consultants letter. I would ask for a joined up response. I am afraid I have no other relevant experience to offer you regarding the particular drugs you mention, but I hope someone else here can be of help and wish you all the very best.
With me I feel all the eye scanning tests, enhanced OCT every few months at one time, and angiograms have impacted. The lesion in my eye they scanned gives me issues in the weeks that follow.
Steroids definately progressed my early stage cataracts. My eye sight is less good, not due to hydroxychloroquine yet which seems to be the only thing that so much attention is drawn too.
Scans are reviewed by the retinologist remotely, she can be abrupt, and my concerns and queries are rarely given any credence.
Much is about the standards that the medical profession use. The shared partnership relating to prescribing hydroxychloroquine helps to protect them from patients who might get irreversible eye damage.
I guess they feel they can do cataract operations. That improves their stats.
Sorry for the cynicism.
I have given up on finding patient-centred hospital care where I live. The lack of NHS Rheumatology care if 2019 blood criteria not met was the start of it for me.
Goodness knows why lupus literature does not cover the eye side effects of other drugs. It should do for steroids as they impact in many ways.
I have found Dr Thomas' Lupus Encyclopedia to be the only place I find things like this discussed apart from the patient leaflets that come with the drugs. As with so many things it looks as if it is left to patients to research everything to inform themselves. Then we face medics who know less than us. Every time I have any eye issue, some of them blame it on hydroxychloroquine. I took my 1000th tablet today, so no, it should not even be impacting yet on my eye sight.
Their training maybe is not too good.
Opticians I have found more helpful, finding the lesion, saying I had uveitis, and offering to contact my GP as eye hospital still fails to ask GP to prescribe drops. I actually think staff there covering minor eye conditions, care more and are more intelligent, probably loving physics at school but maybe not having the educational opportunities of those who can afford and get to medical school. No testing for Sjogrens either too date, one young eye hospital consultant /surgeon, put my dry eyes down to age-related, even though I have a UCTD diagnosis and eye changes happened following covid. It is laugable and they are the last people I would to have operate on my eyes.
NB. Royal Opthalmologists December 2020 Guidance of 'Hydroxychloroquine Retinopathy Monitoring' lengthy document but includes a summary section for layperson:
If eye damage means hydroxychloroquine can't be used, mepacrine is an alternative antimalerial, not known to have eye side effects. Unfortunately it is now unlicensed, and if not prescribed by dermatology, my GP found it impossible to get prescribed here locally on NHS. Hopefully in the future things might change. Pathways and drugs need to relate to patient needs, but the costs of looking after a few, and quick unresearched management choices can mean this is easily overlooked.
Thank you for your response. I agree they only seem to talk about hydroxy toxicity when I think the other drugs that we are given could also be causing problems. Well the optician that I have been seeing seems to definitely think so. I will try to see if I can access the Dr Thomas encyclopaedia that you have mentioned to see what information is in that.
Please first check with your rheumatologist and ophthalmologist first but I was told by my ophthalmologist who is expert in sjogrens/lupus eye issues that even if I have the tiniest change in my eyes then I stop hydroxychloroquine straight away and move to other drugs. I have a full eye scan every year so that any changes can be spotted quickly. Unfortunately there is nothing you can do about eye damage or stop that damage progressing once started but it's the gamble with hydroxy as it helps so much with our immune system and organ damage etc which might be worse than eye damage. I feel for you and hope you get things sorted ASAP. 🙏
Thank you for your response. I agree with you I don’t think that we are told fully about the side affects to the eyes of the drugs that we are being prescribed. I know that it’s the best of two evils but when you have a failing eye sight it impacts every part of your life. I will contact my Rhemy on Monday and also ask him to ask for an ophthalmology appointment for me
Hi littlemissp. I’ve had RA since i was 21. (53 now). I understand your fears. With my RA. I’ve actually got Iritis, which has also led to Glaucoma. (High eye pressure). Iritis is a very serious eye condition, which is inflammation in the eye. This causes deep aching, throbbing, burning, bad vision. I’ve been going to Moorfields Eye Hospital for 30 yrs. Sometimes i’ve had to go to their a&e at 2/3am. I’ve had so many, many steroid injections in the eyes. I’ve had 2 catarracts removed. 1 when i was 26 & 1 when i was 40. I’ve had a Trabectalectomy in the right eye, as the pressure was 50. (Anything over 20 is concerning). My vision was seriously bad. So i had to have implants injected into both eyes. Within hrs, my vision had improved. I’ve now been told i have a hole in my right retina & i will need another operation.
I’m just saying all this, as my eyes have been through ALOT throughout the years & it shows you. They can do ALOT now to improve things.
I hope you can be referred to Moorfields. (Their main site’s in Old St, London. But they now have branches all over). They are 1 of the best Eye Hospitals IN THE WORLD. The staff are fantastic. Very caring, dedicated people. Good luck with everything. X
Thank you for your response. You really have been through so much with your eye issues. With mine they seem to be saying there is nothing that can be done. I was under Moorfields as a child as I have always had a lazy left eye. Which makes all of this even more upsetting as my poor eyesight was made 100% worst with the medication I was given.
Hi littlemissp. I’m so sorry for you situation. We’re all on meds that can affect us in different ways. I have an Infusion of Infliximab every 6 weeks. I’ve been on it for 20 yrs. We’ve all been warned that there are double the chances of the dreaded c word being on this. But with a chronic condition. You have to weigh up the risks. It’s Russian Roulette with our health. I really am sorry about your vision. Is there any way you could make a formal complaint? Sight problems are very scary. I hope you have a good support network. Good luck with everythjng. X
Dear littlemissp,Sorry to hear what you are currently going through. Unfortunately I when through something alittle similar recently but my consultant did not put me on any alternative drugs a she felt I did not warrant it as my ANA has been Neg for the last 2 blood tests. For me -The reason I was asked to come off it was it showed some changes in my eyes they did not say what type of changes just said changes and they could not tell if it was drug related or hereditary as I had strong hereditary link in my family witb macular amd have it in both eyes. I only drive in the day never at night even that only when I absolutely needed to Inthe day time.
When you were suggested of the drug did they give you an option for you to think about it at all . Because why I am saying this it is patient's choice and also they have also should be advising you correctly at the end of the day at that point of time . But what I am going to say is NHS is not a patch of what is was 25 plus years ago . They care or the knowledge the doctor had is far from between. Not unless you get the top bod consultant themselves then yes .
Hope you find some solutions to your medication. For your information, I stopped my medication (Alendronic)on my own accord because they did not even ask what medication I was on the day they saw me when they stopped my medication (Hydroxychoroquine) . I felt Alendronic is the main route cause of the changes in the eyes. As I only started 5 months before I saw them .it was enough time to cause the changes. My eyes have been stable all these time until then I was really annoyed when that happened you really have no idea how annoyed I was. Any way , moving forward, and onwards coming to a year now with more problems.
Blessing for the weekend my dear hope you have a good one.☺️xx
Dear littlemissp,Sorry to hear what you are currently going through. Unfortunately I when through something alittle similar recently but my consultant did not put me on any alternative drugs a she felt I did not warrant it as my ANA has been Neg for the last 2 blood tests. For me -The reason I was asked to come off it was it showed some changes in my eyes they did not say what type of changes just said changes and they could not tell if it was drug related or hereditary as I had strong hereditary link in my family witb macular amd have it in both eyes. I only drive in the day never at night even that only when I absolutely needed to Inthe day time.
When you were suggested of the drug did they give you an option for you to think about it at all . Because why I am saying this it is patient's choice and also they have also should be advising you correctly at the end of the day at that point of time . But what I am going to say is NHS is not a patch of what is was 25 plus years ago . They care or the knowledge the doctor had is far from between. Not unless you get the top bod consultant themselves then yes .
Hope you find some solutions to your medication. For your information, I stopped my medication (Alendronic)on my own accord because they did not even ask what medication I was on the day they saw me when they stopped my medication (Hydroxychoroquine) . I felt Alendronic is the main route cause of the changes in the eyes. As I only started 5 months before I saw them .it was enough time to cause the changes. My eyes have been stable all these time until then I was really annoyed when that happened you really have no idea how annoyed I was. Any way , moving forward, and onwards coming to a year now with more problems.
Blessing for the weekend my dear hope you have a good one.☺️xx
hi there,I am exactly the same. One eye is nearly gone and the other has floaters so it might as well be. But to reassure you, my rheumatologist didn’t tell me either (I think they pray hey don’t have to stop a drug that works). Anyway I told him I was off balance and was seen by ophthalmologists, the fist he referred me to was for general damage, they then referred me to another ophthalmologist to specifically check for plaquenil damage but I was allowed to stay on it while I waited. Everything was fine, it was -they think- the steroids causing the problems. So be firm and get scans done , I hope it works out well. Best wishes, Terri
Hello littlemssp since being diagnosed with lupus and being placed on hydro chloroquine I was told about the side effects of this malaria drug. My Rheumatologist is on me to get special eye exams that measure for Plaquenil ( brand name) toxicity. I have had so many problems with my eyes to include the ability to see colors. I would recommend that you speak with your rheumatologist and ophthalmologist to make an informed decision about continuing your medication or not ❤️❤️
Yeh similar here Hydroxychloroquine with Mycophenolate and wanting me to go on to Ritux.
Cataracts started and eyes sometimes red eye but I have to keep putting in drops to stop any swelling and hourly drops for dry eyes Kidneys behaving but only another urine/kidney infection to cause trouble - emergency A&E and then hospital bed 3 times now with Sepsis - no action quickly then its all over . One year now and no infection so fingers crossed.
Consultant told me that Hydroxychloroquine can cause eye trouble after 5 years and regular checks needed. Wonder what is the alternative! I wish they knew where Lupus comes from, it amazing with all the skills at hand today at least a clue would be good. Hope it all improves for you x William
when I was first diagnosed with both Sjogrens & Lupus I was immediately put on hydroxychloroquine. I was informed that my eyes would need to be checked every 3 months. After 18 months I was told that damage was occurring and I must go off of it immediately. My eyes continued to deteriorate and I was diagnosed with optic nerve atrophy. I was also told that even after going off the medication the damage will continue because the medication stays in your body a very long time. I was also falling every day. The neurological team I went to was from The Cleveland Clinic. I had 3 doctors, all neurologists. One was for neurological issues causing eye problems, one was for other problems including heart and balance and one was a general neurologist. The neurologist I saw for my balance sent me to a balance specialist who diagnosed the problems. I was then sent to a specialist eye doctor who put prisms in my glasses. This retrained my brain. Within 6 months the prisms were cut in half. I did not need them at all after a year. The falling stopped immediately from the first time I put the glasses on. I have never taken another prescription medication for Lupus or Sjogrens with the exception of cevemeline for dry mouth. I also have MTHFR and I have personally come to believe that my inability to metabolize B vitamins has played a part in all my autoimmune diseases. I have followed research mostly from an alternative approach. Three things have helped. First, I invested in an infrared sauna. This was to address the fevers I would get that would last for 3 weeks, stop for a week or 10 days and return. I used the sauna for 45 minutes a day for 9 months. They stopped within a month after starting using the sauna & have not returned. Second, I started using a liquid glutathione product that you swish in your mouth and it gets into your body that way. The final alternative product is a stem cell patch you put on the back of your neck witch works using the light in your body to help renew stem cells. My rheumatologist claims I am in remission. If I don’t watch my diet I will have flares in my mouth. I continue to see the eye doctor every 3 or 4 months and have had surgery for both cataracts & glaucoma. I also now have a pacemaker/defibrillator. Not metabolising B vitamins caused high homocysteine in my blood which causes heart disease, blood clots & strokes. I have been taking a product supplement called homocysteine supreme. At my most recent cardiologist appointment, I was told that I don’t need the pacemaker anymore. He offered to turn it off but I decided to leave it as it was. I still have chronic fatigue and I take medication for that. I hope something I have wrote here will be of help.
I’m on the same meds as yourself and have been for over two years now. I haven’t suffered any sight loss as yet, so far so good but I was told by my specialist just before going on this medication that I’d need to get my eyes 👀 tested every year. Which I have done 👍 I’m sorry to hear about your awful ordeal but I’m afraid you should have definitely been told!! Ido hope they don’t get any worse and I’d definitely talk with your Specialists about it. Take care x
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