Retinal thinning anyone? A sign of NPSLE? - LUPUS UK


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Retinal thinning anyone? A sign of NPSLE?

Jmiller623 profile image

Something funny to start the day! ☺️ A sign from an actual Texas restaurant that always has hilarious postings.

Don’t you love when you have something wrong and no one tells you? Saw neuro-optho for follow up yesterday and apparently I have retinal thinning in upper, outer portion of my retina. I saw a new neuro-optho because my last one left and so is this one. 😟 She said the thinning is stable and not caused by hydroxychloroquine. Said it’s very common in inflammatory disorders and likely caused by small vessel disease. So I did some research.... low and behold, retinal thinning is a pretty good marker for neuropsychiatric lupus in those without positive antibodies such as ANA/dsDNA. Since NPSLE is notoriously hard to diagnose when it is an initial and major presenting symptom, I found this paper to be amazingly interesting. Anyone ever tell any of you that you have retinal thinning? I know we all go to optho for HCQ toxicity monitoring. This finding and what it means floored me.

I still have marked bilateral nystagmus and she agreed to keep on with the recommendation of neuro dosed IVIG. Woo hoo!!!

25 Replies

Have you tried staring at a red light (400-700nm wavelength) for a few minutes everyday?

According to recent research by UCL in the UK this can rejuvenate the mitochondrial organelles within the retinal cells and arrest retinopathy/maculopathy age related or otherwise.👍☝️

I have both.

Retinal thinning? Which layer?

I also have what my ophthalmologist calls “epiretinal membrane “?...but is it actually scar tissue due to laser treatment?

I’ll have to look into that!!! For some reason, links from HU haven’t been working for me lately. Says Bad Request. But I will definitely read up on it. Thanks!

My retinal nerve fiber layer is thinning. She said it is highly vascularized and easy to see since the nerves aren’t myelinated. My vision is still fine minus the wonky eye movements and such. Color distinguishing is still great. Just found it really interesting where small vessel disease presents. Like being/having diabetic problems without having the whole diabetes part. Certainly has done a number on my nervous system.

Never heard of an epiretinal membrane. But all this eye talk has me looking up optho problems in lupus and it’s crazy! Same with hearing. Like 20+% of lupus patients also have hearing loss. It’s wild. So hard to tell if things are from lupus or something you would’ve had either way.

Again, thanks for the tip!


Just in case the link does not work I’ve copied the results (salient summary) here:

“...All participants were then given a small LED torch to take home and were asked to look into its deep red 670nm light beam for three minutes a day for two weeks. They were then re-tested for their rod and cone sensitivity


Researchers found the 670nm light had no impact in younger individuals, but in those around 40 years and over, significant improvements were obtained.

Cone colour contrast sensitivity (the ability to detect colours) improved by up to 20% in some people aged around 40 and over. Improvements were more significant in the blue part of the colour spectrum that is more vulnerable in ageing.

Rod sensitivity (the ability to see in low light) also improved significantly in those aged around 40 and over, though less than colour contrast.

Professor Jeffery said: "Our study shows that it is possible to significantly improve vision that has declined in aged individuals using simple brief exposures to light wavelengths that recharge the energy system that has declined in the retina cells, rather like re-charging a battery.

"The technology is simple and very safe, using a deep red light of a specific wavelength, that is absorbed by mitochondria in the retina that supply energy for cellular function.

"Our devices cost about £12 to make, so the technology is highly accessible to members of the public."

I’ve got myself a clamp on table top lamp stand and avert my eyes to it whenever I watch tv and the inane adverts come on. Easy🤣 red 💡 (oops red)! Less intrusive red light therapy ☝️for me...

Imagine if the neighbours caught on? We would soon have a “red light district”?🤣🤣🤩. Should we be speaking to the red light district dwellers about “repurposing” red lights?🤫🤣🤣🤣

All the best with the eye appointments?👍

Ps just wondering whether this could help with HCQ retinal damage as well as altering the dosage??🤔


Hi TroublesomeLupus. That sounds so interesting. Where could you get that particular light/torch with the red light if that frequency please? Thank you.


Red lights (lamps) are usually between 600-700nm wavelength of the electromagnetic spectrum.

It doesn’t have to be an exact wavelength as in the research study given as 670nm.

I bought my red light bulb from a specialist electrical online shop.

From the catalogue: GLS, LT GLSBCR LED, 2 watts. It’s low energy as well.

They are called TLC electrical s:

Trust this helps?


Honestly I’m not sure of the mechanism behind Plaquenil induced retinopathy and whether red light exposure would decrease this side effect. It’s a good question. I do know in the paper I attached, it made no difference in frequency of retinal thinning if you were or weren’t on Plaquenil. They actually found incidence a little less in Plaquenil group but not statistically significant.

I’m 36 so not sure how much benefit I would get out red light therapy but happy to try anyways. Maybe it’ll preserve what I have left. 😉

Red light district filled with people going blind.... that would certainly be a sight! 😂🤣

Hi,Re. “epiretinal membrane” ?!

Never heard of it my self but at one of my ophthalmology appointments I asked because I noticed my vision was getting cloudy and the guy told me it’s a kind of very thin translucent layer growing over the retina🤔

As both my eyes have been zapped with a highly directional laser to seal up those leaky retinal capillaries I thought it could be a kind of scar tissue response to all that laser treatment I’ve had ?

The response was “possibly”?🤔...from the ophthalmologist so I’m none the wiser.

Just have to accept that the latest retinal screen was reasonable with no need for further laser treatment?

I will have to check out the prognosis of my erm!? Yes, ?ERM?🤣🧐

Excuse the craziness but all this lupus has made me looooooooopy....

That is very interesting. Hope you like this new neuro optho. She will likely follow this closely.

😍 Kay

Jmiller623 profile image
Jmiller623 in reply to KayHimm

She’s leaving too. She was picking up my last neuro-optho slack from when he left. On to the next one.

KayHimm profile image
KayHimm in reply to Jmiller623

That is frustrating. Who wants to have to get used to new doctors, right?

I've recently had to suddenly go on long and high dose of prednisolone treatment - and very quickly developed a retinopathy of the left eye. ( esentially a blister over the retina ) No problems of the eyes before hand - been on roughly 5mg pred over 45 years - with several other flares where I had to up pred to equal nasty doses - with no problems.

Not much fun. Flarey warped double vision at the moment.

I was kind of given the choice of choosing between the vision in my left eye or under treating a Neuro flare. Currently siding with keeping as many neurons as possible.......but really......really hard.

If I close my right eye - people look like they have massive rounded bodies and tiny pointed pea heads. Good for a laugh at least.

Interesting about the NPlupus. Pretty much everyone from the opthamologist - Eye Specialist to Rheumatologist says it's the Pred.....but still waiting for my Neurologist's opinion about it.

Would love to hear what your neuro has to say. I am currently not on steroids. I was for a good 6 mos back in 2019 but have since tapered off and try really hard not to use them since I get a lot of side effects.

My left eye has always had input issues like I see things but can’t really process what they are or focus. This will always be. But I also have nystagmus all ways and IVIG has helped with this tremendously. I do actually have cranial nerve neuropathies and NPSLE so that made me even more intrigued by this article.

Thanks for sharing! Keep me in the loop with what your neuro says. ❤️xx

My Neuro and Rheumatologist have become unervingling quiet on me - still waiting on his opinion. I'll see him early July. If you can remember - you're welcome to track me down here and I'll give you a full update. X

Hello.I'm sorry to hear that you have this. Do you have symptoms that you are aware of? Re your eyes I'm thinking? Or was this solely picked up at this test? Will there be implications for your sight?

I have never heard of this as an indicator for NPSLE. It's fascinating.

Thank you for sharing.


Jmiller623 profile image
Jmiller623 in reply to Wendy39

I have blurred vision but it’s caused by cranial neuropathy and responds to IVIG quite well. My vision is otherwise fine. Can see full color spectrum. This was picked up during my Plaquenil screening. Apparently it’s been there since 2019 when all this lupus stuff started and is stable. She didn’t say it would be an issue. Just that it’s there and to keep an eye on it. Surprised no one really mentioned it to me before. She said it’s very common in inflammatory disorders.

Freckle1000 profile image
Freckle1000 in reply to Wendy39

The first MRI interpretation of my brain showed the possibility of intercranial pressure ( thankfully ruled out ) but the secondary indicator sign of this kind of pressure is the optic nerve pushing through at the back of the eyes. ( Dodged a bulket therethank God )

With retinopathy - One GP told me that if the retinopathy had suddenly come on in both eyes- then it could be supportive evidence of intercranial pressure.

What has shocked me on this journey is just how little they know about Neuro lupus - and the lack of consensus on what's going on how best to treat it.

I've had two radiology reports on the brain with two different interpretations and two different specialists: - Rheumatologist / Neurologist with two differing opinions on treatment.......and neither wanting to take ultimate responsibility or propperly consult with each other on medication alterations after the retina problem. The Rheumatologist who's meant to have the final say - has stopped writing letters to GPs and other specialists 🙄 who have been franticly writing to her.............Rheumatologists are just so inadequate as our specialists.

I've had to just make the medication choice myself......while in an active neural flare....... sided with the Neuro as his advice had much more gothic clarity to it.

It was a lumber puncture that showed It was lupus and provided the ultimate diagnosis in the end. SLE cells - obligonical bands etc in the cerebral spinal fluid.

But this kind of test doesn't help with peripheral nerve damage diagnosis - which has been a simmering longer term problem for me.

Omg Freckle. You took the words right out of my mouth with regard to rheumatology not being adequate specialists for all of our care. They need comprehensive centers.

And I, like you, have TONS of peripheral problems. The only reason I got IVIG approved is because the nerves feeding my eyes and ears were effected. That way they could actually gauge progress on my eye movement and visual acuity. Same here with the lack of communication. Neuro optho wants rheum to write IVIG orders and rheum wants neuro to do it. Rheum doesn’t want to take the liability if I clot but I signed a release saying if I clot, I knew the risk. It’s so friggin frustrating.

As long as my eyes are telling, I’m hoping to forgo an LP. I know how those go and I might kill a resident if they didn’t get it on the second try. But then again, I’ll probably need it to be done by radiology since all my discs are gone in my lumbar spine which means there’s is no space for a needle.

Thank you so much for your input. So reassuring that I’m not alone. ❤️xx


Bit in a similar boat, but a sadder one in some way.

My neurologist here in Texas died of Covid in mid December.

My neurologist had mentioned to me a couple of months prior we might need to consider shifting to IVIG , as rituximab had reached its potential in my case, and it wasn’t enough. He wanted to pursue ivig “when pandemic settled.”

When my neurologist died, my GP and I together found a new one. My GP mage referral and mentioned ivig as a reason for referral.

Two weeks ago I had my four At appointment with new neurologist- he was great! He also wanted to start the ball rolling for IVIG immediately. He thought I was an ideal candidate. He said he prescribed a special “cocktail” for lupus- APS- mast cell patients to help them not have the reactions that commonly plague them. ( vitamins and minerals) plus they are given it very slowly- sometimes over two days - very little caffeine a few days before and extra hydration before and after. I’ll know more later...

I has a meeting with my rheumatologist last week. He seemed taken aback that my new neurologist was so quick to proceed- and so positive. Had my rheumatologist forgotten he was the one who suggested it in the first place?!

These the docs share patients all the time- so this is good... but I’m feeling less optimistic now about avoiding yucky side effects.

Hey Kelly. Good luck with IVIG if you get it approved. I was offered plasmapheresis, rituximab or IVIG for my nerve problems. I chose IVIG because I do horribly with further immunosuppression. I haven’t had any problems other than a horrid migraine for a day or two after infusions. Otherwise, it’s worked well for me. I know some people can’t tolerate it because of MCAS type stuff. I’m forever doused in antihistamines and leukotriene inhibitors so reactions are pretty quelled. It gives me eczema and small vessel vasculitis type rashes but they subside after a few days.

Let me know how it goes if you get it approved! ❤️xx

I’m already on rituximab, ( 1000 mg every 12 weeks) so the IViG will be added to it.

I was hoping to ditch the Rituximab, but my rheumatologist said to keep it - adjuvant therapy.

Sorry for the late reply. Been doing a lot of chasing down of specialists - making sure they don't stall and wiggle out of appointments. It's been a bit disconcerting.

You're definately not alone with all this. Rheumatologists- (and others) just taking a sometimes tricky step back and hoping someone else will take up the slack. It's an absolutely terrifying phenomena - especially when things are so serious. Unfortunately in my experience - rarely does anyone else want to take up the slack.

I had one Rheumatologist shut down on me with a bad renal flare - he told me what was going on over the phone - initiallly didnt share the information with my GP - and then just wouldn't do the referral to a nephrologist. Eventually after pushing his receptionist she somehow made him do it - but it was absolutely terrifying and caused a two week delay in a very serious situation that needed emediate attention.

I'm from Australia - and we're pretty powerless to make effective complaints to our ( corrupt ) medical board - and sueing only happens if you're willing to risk youre house - so I don't understand what their fear is.

Is Lupus just too nebulous and unpredictable for them ? - Doctors like black and white ? What's for certain in Rheumatologists are just too under - qualified and behave unethically as a consequence.

We so need a new discipline of Lupus Specialists and as you said - comprehensive centres where responsibility for our care is seen as a positive challenge and a badge of honour - not something thats just too hard.

I've got a few hairy days with appointments - but I'll definately get back to you soon with the peripheral nerve damage stuff. Many years of that - mostly below the neck for me - slowly causing problems - always being attributed to everything but lupus - until now.

Looks like we have a lot in common.

X 💕💜💕

Hi Jmiller. Thank you very much for posting this. I have been told only a few months ago that I have mild thinning of outer layer on OCT and no action required and monitoring every 2-3 months. No explanation what it means etc. Just got a letter today with another appointment so will ring them tomorrow to request so speak to a doc when I am there to be explained.

Freckle1000 - truer words were never spoken! They have not understood much in terms of neurological problems in autoimmune patients.

It seems to be getting better. There are powerful imaging tests that may help to see what is going on, they have isolated new antibodies, and there are neurologists devoting research to autoimmune disease.

What I read that makes sense is that they don’t understand the mechanisms at work as they do in renal lupus. The brain is so complicated. And they can’t biopsy the brain (unless they have to) like they do with the kidneys.

In the US there are now fellowship programs in autoimmune neurology. That is an important move forward. It is training doctors to special in us and to do the research.

My neurologist says treating MS is easy compared to us. It’s just an algorithm. Maybe that will be true of us soon!

😍 Kay

Optic nerve thinning- and macular cube thinning , retinal thinning, and retinal thrombosis.

Is there a way I can send you photos of my reports?

My diagnosis is ischemic optic nerve atrophy, but encompasses your issues also.

I have lost a LoT of vision.

Once warfarin was started it stabilized. But tremendous nerve damage was done.

To be honest, optho is not my strong point. But usually when you get ischemic nerve atrophy, you can tell the cause based on where the ischemia is.... whether it’s stroke/large vessel, tumor/compression vs vasculitis/small vessel. Small vessel ischemia usually messes with motor function as opposed to pupillary function (which you see in stroke and compressive masses). And the unmyelinated nerves go first. This is commonly seen in diabetics and those with small vessel disease like us. Don’t know if full anticoagulation even helps with small vessel disease at this level but aspirin has been shown to help esp in diabetics. Some articles on NPSLE vs APS diagnosis and use of IVIG is such situations.

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