Hello everyone. The saga with my eyes continues. I went to the Optician, a different one this time, for a sight test. My GP and Rheumatology Helpline had told me to restart the Hydroxychloroquine but I felt that I needed to get my eyes checked first. On Tuesday the optician found fluid on my macular again, refused to test my sight or peripheral vision and did an urgent referral again to the macular unit. I went the following day and thankfully the staff were far more informative than the previous time when I was told the fluid had “ gone”. She noted that my eyes were very dry and sore, that there was indeed fluid on the macular but that it was not sub retinal and therefore not as concerning. She looked at my scans from June and said that there had been fluid on both eyes then, contrary to what I had been told. She explained that if the fluid is nit at 6% then they do nit treat but monitor . The treatment is a needle put into the eye to draw the fluid and it can cause infection or damage to the eye. My problem remains. The Opthamologist will nit advise on Hydroxy, the Rheumatologist is disinterested and says just take it even though he has said I do not have Lupus and Bechets that I have been treated for for ten years. My eyes are so sore and I cannot get my eyes tested as it will send me back to the macular unit who will nit treat me. I understand why but feel I cannot seem to get off this merry go round. Any advice would be gratefully received.
Macular Oedema: Hello everyone. The saga with my... - LUPUS UK
Macular Oedema
Hi there CP. I really know very little about this but I wanted to respond because I’m at the eye clinic for my annual dry eye disease review tomorrow morning and I’ve had some problems all year with swelling/ oedema around my eyes.
I didn’t realise it was this until I described it to the connective tissue disease professor when she asked how badly my Sjögren’s affects my eyes. She says this swelling and blindness during the night and first thing in mornings isn’t caused by dry eyes as I’ve been supposing - it’s caused by fluid retention around my eyes and face same as hands. Apparently it occurs because I’m not using my muscles when resting so the lymph fluid can’t move about and gets trapped. I think this is vascular or lymphatic but the way she said it made it sound very normal so I assumed it must be an ageing thing. Then afterwards I googled fluid retention in hands and around eyes and it seems that when it’s chronic it’s usually caused by a collagen vascular disease such as Lupus or Sjögren’s or Scleroderma - all of which I seem to have to a degree.
I know this isn’t same as what you are describing and I couldn’t tolerate Hydroxy or other dmards so I’m currently untreated. And I do have a definitive diagnosis of Sjögren’s and now overlap CTD.
But like you I’ve had so many differing opinions and changes of diagnosis and different adverse reactions that it’s hard to know who to believe or trust. I’ve been left to work out a lot myself and my conclusion is that my hunches that I have a type of lymphedema are most likely to be right. I will ask the very uninterested overworked ophthalmologist tomorrow before they discharge me.
My night blindness has always been blamed on dry eyes and neuropathy but I’m starting to think, from what the very eminent vascular medicine prof told me last month - it’s actually due to degrees of fluid retention everywhere that’s my main issue. This swelling around my eyes causes a panda appearance of bruising. It also caused falls because, even in the day time, I miss steps and don’t see tree roots (today!) or rabbit holes so I trip and fall on a weekly basis. If the doctor says anything useful this time I’ll post but usually it’s a 2 hour wait for a really useless consultation!
Thank you for responding. Bless you the fluid retention around your eyes must be miserable for you. So much of our conditions just do cause utter misery and they are relentless. The Optician I saw yesterday said she suspects much of my burred vision is down to very dry eyes and expressed incredulity that I was not under the care of an Opthamologist. I totally understand the disinterested non event of appointments. My GP wants me to chase my Rheumatology appointment but to be honest I am just dreading seeing this new one because if he tells me my problems are down to hysteria after the past few months I swear I will lose it with him. I have had contact with three separate people over the past few weeks and know now of two complaints placed and one where a woman has instructed a no win no fee solicitor to charge him with medical negligence. Whilst I am shocked by what I have learned it gives me some comfort in that I am not alone in my lack of faith in him. Good luck for your appointment. I really hope it goes better than you anticipate xx
Hey please carry on refusing to be medically gaslit. Honest I’m chatting to someone from the FND hope(less) community at same time responding to a post where they have described going from being diagnosed with MS to FND- now wheelchair bound with many symptoms of Sjögren’s and Lupus but never yet investigated for either. Their mother has Lupus. It’s tragic and it makes me so mad too🤬!!
Re eye clinic - I have a friend with Sjögren’s and Addisons. At her own admission neither are progressing - both stable and her Sjögren’s is entirely predictable and classic. She is under rheumatology in my hospital for 4-6 monthly review appointments and is very happy with her rheumy and sees the rheumy nurse who is newly trained up to see Sjögren’s patients who’s disease is relatively stable. She has been under ophthalmology in same hospital for years now. Like me she has plugs, very dry eyes with no progressive damage but still needs to apply drops every few hours.
She has just been moved from 3 monthly to 6 monthly appointments which change she is perfectly happy with. Unlike me she doesn’t have CTD overlap, Raynaud’s, Erythromelagia, GI problems at both ends, skin cancer and crest symptoms or small fibre neuropathy. She doesn’t even need to wear glasses as I do and nor is she photo sensitive.
My friend cannot see why on earth I’m getting such different healthcare to her from the same hospital specialists in same hospital and nor can I? This is what I’m going to ask the eye consultant tomorrow and the rheumy second opinion next month.
Dry eye disease is much more of a problem than most general eye clinicians or rheumatologists will acknowledge according to the optician’s I’ve been under and according to Dr Liz Price, UK Sjögren’s expert rheumatologist. So it really could be that being treated properly for the 3 main types of dry eye disease could help you immeasurably. Behcets and Sjögren’s can often seem almost identical diseases. X
Cecily -
I can certainly understand why you would not want to see another rheumatologist after your disheartening experience. As I see it, changing a diagnosis of lupus or Bechts to « nothing » is serious. It requires a serious explanation by any doctor evaluating you. It implies you have been on potentially harmful medication for no reason. You are the one with the upper hand in this.
If you do decide to see the rheumatologist, maybe prepare a list of questions that will get to his/her reasoning. If they say lupus, ask for their reasoning. If they say fibromyalgia, ask for their reasoning. If you have had certain positive blood tests in the past, ask how they interpret those tests.
You deserve to know what is going on. And why are they leaving you on plaquenil without a diagnosis?!
Good luck. Such a shame you have to go through this.
K
Thank you. It has been so stressful. I was too astounded by his describing me as suffering hysteria and my brain imagining the oedema to offer much of a response last time. Thankfully I have the results from a freedom of information act request which clearly state that there was oedema on the macular last time and that it fitted with an increase in my Hydroxychloroquine. I am making the assumption that the Opthamologist viewing the scan would have been very concerned that my dose age was upped to 600 mg. The Rheumatologist my GP spoke to having reviewed my latest blood tests was the one who advised to recommence the Hydroxychloroquine. Ironically he was the Rheumatologist that first diagnosed Lupus ten years ago.
What a nightmare Cecile , hope you get to the bottom of this, yes it’s so demeaning when doctors treat you so badly, rheumatologist seem to be good at it , I know from on here there are good ones about but when you’ve not met one it’s as you say hard to deal with on top of being unwell . Hope you find the help soon so sorry you are going through this I understand how you feel from experience , of all people It’s my ent doc who is trying to work it out and pushing for answers but because of rheumy being led by blind is not helping. If ent did not show interest I’d be totally lost, he acknowledges symptoms , says he is trying to fit into diagnosis but will continue to search but he’s stumped. It’s comforting to know he wants to help if only the rheumy department had the same interest rather than discharge with fibro as no answers and not testing other things. He also said he’s inclined to agree it’s not fibro as not fitting which was music to my ears as this is my own opinion too whether I do have fibro or not .
It’s hard road take care and battle on not that we should have these battles.
Thinking of you
Best wishes Cecily 🙏
Hi, I am so sorry that you are struggling too. It seems standard for many. I was fortunate ten years ago that the Rheumatologist diagnosed Lupus within six months and the Haematologist confirmed the diagnosis and was far more informative than the Rheumatologist. Then I saw a different Rheumatologist who decided not Lupus but Bechets. Then I was diagnosed with Low Grade Lymphoma and found myself under another Haematologist and Oncologist. They were talking about biopsies of the lymph nodes around my heart and lungs. It did not feel right so I asked my GP for a referral to St Thomas’s Lupus Unit. I was seen and the diagnosis of SLE reinstated. I was re started on the Hydroxychloroquine and had a CT scan again three months later. I was discharged from Haematology and Oncology. Phew!! I have been treated by rather indifferent Rheumatologist but no major problems until this current one decided there was nothing wrong except hysteria. I had a very good gastroenterologist who really was convinced I had CREST given my rashes, Dysphagia and spasticity in my hands but the Rheumatologist pooh poohed it. I truly hope that you get the help, support and definitive diagnosis you need to move forward. Have a lovely Christmas and start the fight again in the new year 🎄xx
Oh boy you have been through it , yes so hard when they don’t even agree with escort her and makes such a difference to controlling your symptoms 😩 I hope you get a different rheumy that really is appalling , must have been the one I saw 🙈😂
Yes will have to push forward 🙌🏻🙈
Best wishes 🙏
Ask your optician or GP to refer you to an opthalmologist if not already seeing one.
Yes I think that is a very good idea, thank you
TT my comment to you is the same one I left for CP. Hoping the best for you both🙏.
Cecily, I am so very sorry you are going through all of this. I wish for you some good news for 2020. Hopefully you can get off this merry go round. 🙏
Thank you so much I hope so too. I hope 2020 will be better for all of us xx
🙏Amen to that! Merry Christmas Cecily!
Merry Christmas xx
I’m going to put my two cents in but take it for what it’s worth. Two cents.
One of my co-researchers (an immunologist) told me we AI people send white blood cells to places in our bodies that our brain thinks are infections. Since our eyes collect dust every day and all day our immune response is overactive (particularly you TT as you seem to be Pan-AI) and our eyes get periorbital puffiness. She said not to up my HCQ just for that. She’s not my doctor but she recommended the dry eye protocol for allergies. No meds.
Disclaimer:
This is not doctor to patient info. Its researcher to researcher (immunologist to neuroscientist, or friend to friend.)
Dear CecilyParsley, I have severe SLE and am on hydroxychloroquine long term. I waited over a year for an NHS eye check, then after consultation with my rheumy (who told me that there is a backlog at the NHS at the moment) went to Specsavers. Specsavers diagnosed very very sore and extremely dry eyes and said that I needed Hycosan Extra drops. I used these diligently and they have helped me enormously. (Available online). Steadily reducing the symptoms so that I am now much more comfortable. She also gave me something called an Amsler chart, which is a one page piece of card, which I can home check for any macular alteration every two weeks. You may already be using all kinds of drops to no avail, but I just thought that I would mention my experience in case it is of any help. Also, when in my teens, with rampant undiagnosed lupus and experiencing quite dramatic oedema around my body and especially around my eyes....was told by one doctor that it was "puppy fat" and therefore nothing to worry about. With my very best wishes and happy Christmas, Lily
Hi Lily, thank you so much for responding.The Opthamologist put me on Hylo Forte drops and until a few months ago they eased my dry eyes and made a real difference. The Optician at the Macular Unit recommended a gel which she said I should use at home as it does cause blurring but is a real boost with regards the dry eyes. I will try it once I remember what I did with the paper she wrote it down on. Brain fog is dire lol.Yes I used the Amsler grid when I experienced headaches and a lack of peripheral vision and it was scary how the lines wriggled. I have really bad oedema around my feet and ankles but not so much around my eyes. I am just waiting for a GP to call me back about the Hydroxychloroquine. I hope that you and your family have a very Happy Christmas too. And that we all have a healthier New Year xx
Hello Cecily. Just to provide some anatomical context regarding the functioning of the eye: the macula is the central 5% of a larger tissue called the retina. The retina lines the inside of your eye and functions very similarly to the film in a camera, i.e. it captures the image you see. The central 5%, i.e. the macula is the most important functionally and gives the visual fine details, colour vision etc. The macula can be affected by a multitude of possible pathologies (most of which are unrelated to hydroxychloroquine or any auto-immune conditions such as SLE or Behcet). Fluid accumulation in the macula will disrupt its function and the commonest cause is a condition called age-related macular degeneration (googling this will bring up plenty of information); the fact that consideration has been given to an injection suggests this as being a likely possibility). Other conditions that may benefit from injections can include diabetic eye disease. Treatment using the injections include drugs such as Lucentis or Eylea; not everyone with age-related macular degeneration will need treatment as the therapeutic threshold depends on severity and if you have the condition, it would appear that you have it relatively mildly, hence no treatment advocated, and the eye clinic should monitor the situation and commence treatment if it is to worsen.
Hydroxychloroquine toxicity does not lead to fluid accumulation at the macula; it causes cell death at the macula and a corresponding loss of vision. There is a view that having other macular pathologies may increase the likelihood of hydroxychloroquine toxicity. The risk of toxicity is rare before 5 years of therapy but does become more common after 10 years particularly if the dosage of hydroxychloroquine has been high over the period of therapy.
The tests for hydroxychloroquine toxity will include a visual field examination, OCT examination (which is the test you will have had which detected the fluid at the macula) and a third imaging test called autofluorescence.
Hope this helps clarify things somewhat. All the best.
Thank you. Odd because both opticians told me the fluid was a direct result of the Hydroxychloroquine overdose. In June after three months on 600 mg I had headaches and very blurred vision and fluid on both maculars. As I have my eyes tested every six months because I had been on it 101/2 years the fluid had not been there in January. The fluid has now resolved completely in my left eye but remains on the right but is less than the fluid present in June. They do nit intend to follow me up either just advised to get my eyes re tested by the Optician in two months. They say my sight is good but the dry eye is causing the blurring.I appreciate your comments and will definitely discuss this with my GP.
Just to follow up on this post CP - the ophthalmologist I saw again was kind this time. When I explained about the fluid retention comment he seemed a bit surprised and then examined my eyes. He found them to be very dry as usual but also said same as my optician - that one of the three types of dry eye disease of Sjögren’s is getting worse. This is Meibomian Gland Disease/ MGD - used to be known as blepharitis. I do already use heated eye mask already and massage my lids daily - but he says more massage is needed.
Apparently this is just part of Sjögren’s and he thinks it’s possible that this is causing the swelling in my lids and the blurring etc to be more severe over time. I guess that if the meibomian glands are only just about producing a thick white oil rather than the normal oily flow this could explain a lot for me. Maybe for you too?
No mention of macular degeneration issues for me but he showed the trainee registrar some dark spots at the back of my eye - didn’t explain these to me but think they are also dry eye. He has increased the reviews to 6-9 monthly.
Massaging lids after applying heat seems key. Sorry if I’ve asked or if you’ve said this already but has Sjögren’s been mentioned as a possibility for you I wonder? - it also can cause mouth ulcers and many other symptoms you mention including imitating and increasing the risk of lymphoma.
My last Rheumatologist rejected the possibility of Sjogrens. The letter from the Opthamologist says that the fluid on my maculars are cysts? No explanation other than get checked in two months. I have an appointment with my GP in January and hopefully I can get some advice. .
Well it sounds to me as if you’ve had so many different rheumatology opinions that it still might well be worth keeping Sjögren’s in the frame anyway? It can only be excluded by lip biopsy.
My first rheumy diagnosed RA, second rheumy said I had no CTD at all, third said possibly Sjögren’s and arranged the lip biopsy which confirmed it. Fourth has been another can of worms and I’m seeing a 5th one on 9th for a second (or 5th) opinion on whether I have overlapping CTD.
I really hope the cysts/ fluid settles and the cause is finally established in the new year. Xx
Thank you, yes it seems to be a minefield of misdiagnosis and professional indifference out there. It would be so good to get a consistent diagnosis and approach rather than a feeling of being a burden and a nuisance constantly. Xx
I guess, to be fair, these diseases of ours aren’t black and white to diagnose or to treat. My first rheum used to tell me that being a rheumatologist is very difficult compared to black and white specialisms such as cardiology, oncology, endocrinology and gynae. This is why there’s such a world shortage of rheumies he said.
He always used to say “keep an open mind - this diagnosis of RA is provisional. Things do change”.
So I try to cut rheumies some slack and also have learnt to trust my own instincts over the diagnostic decisions of my doctors on what is happening in my body and mind now. I’ve only had one rheum for 6 months whom I knew I’d never make any headway with because he was so black and white about bloods and the diagnostic criteria. He managed to miss everything!
No one should ever be made to feel like a burden or a nuisance - that’s just so wrong. 🤗
How about a different - low dose immunosupressant, perhaps small dose pred ? All these medications have their downsides, its like weighing up all you're risks and suffering. While hydroxy is - known for preventing flares, it's not the strongest immuno - suppressant out there.
Something to discuss with the dreaded Doctors. I'd hate to risk my eyes.
I have SLE with internal organ involvement and my Drs wanted to add hydroxy to the tons of Pred and Mico I'm already on. ( for the prevention of flares bit ) To be honest the stuff had a terrible effect on my mood so I had to stop taking it. It was my informed choice not to take it - and I worked with my Doctors all the way in making that choice even though they would still like me on it.
It's a horrible game if pro's and con's and figuring out which suffering you'd prefer to balance and risk.
Not at all fun.
You are right. I would be happy never to take it again if my current Rheumatologist had not undiagnosed me with everything but Fibromyalgia and condemned all previous Rheumatology opinions over the past ten years as “ crap”, insinuated that the fluid on my maculars were “ hysteria” and told me that I was someone who was always ill with nothing wrong? I really don’t know how I can work with this man, let alone discuss treatment for conditions he doesn’t feel that I have. We still have three unfilled Rheumatology posts currently so I am on this man)s list until the posts are filled. Maybe then I can start to work towards an effective plan xx
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