Lupus and eyesight

[Corcan]

Has anyone with Lupus got problems with their sight?

[sabine]

Hi Corcan, yes i have problems with my eyesight only over the past two years though. have been on Plaquinol (Hydrocloxechloride) for over 18 years and have now started to suffer with red eye and conjunctivitus along with my other normal lupus symptoms. you must have regular eye test either at the hospital or a good optition, to keep this at bay. all the best, 😀👍

[SurferGuy in reply to sabine]

Hi Sabine, Hydroxy has so far been kind to me. However, after years of Prednisolone use, I now have cataracts and now have slightly blurred vision. The doctors are monitoring this and I've been advised to try and taper down further on the Preds.

[Suvi8901 in reply to SurferGuy]

Were you on a very low maintenance dose of eg Prednisolone 1/2 mg per day?Are the docs thinking of cutting it out completely or reducing! Difficult to judge if cataracts are steroid induced or age related!

[SurferGuy in reply to Suvi8901]

Afraid not. I initially started off on 20mg, which I gradually over the years cut down to 5mg. There were fluctuations in-between when I had flare-ups, but on the whole over the 14 years that I've had Lupus, I'd say I've averaged 10mg of perdnisolone.

A couple of months ago, I was close to going down to 2.5mg, but then had to have antibiotics for an year infection and had a massive flare-up, which then took me back up to 20mg. I've now tampered down to 10mg (just hot the 10mg this week), although am beginning to feel joints swelling up. But hoping my body will adapt to the 10mg over the next couple of weeks until I see my consultant in June

PS The consultant is quite certain the cataracts is because of the steroids as I'm not *that old* yet... although I do feel it LOL!

[Suvi8901 in reply to SurferGuy]

Sorry to hear about the steroid induced cataracts, “10 mg/day on average for 14 years” is pretty high! Quite a high maintenance dosage?

I have lupus nephritis, diagnosed 2016 through biopsy and blood tests. Had classic kidney dysfunction? Initially prescribed 45mg Prednisolone/day then tapered to 10mg/day three months later.

Consultant Nephrologist wrote out a MOST helpful tapering dosage protocol for the next 15 weeks for me to follow. You should have had the same?

Now I’m down to 2mg/day.

Nephrologist explained that adrenal cortex starts to produce in vivo steroid hence fewer white pills once the acute inflammation goes down and settles. I’m still on 4x500mg MMF/day which seems to be working giving me an eGFR >90👆

Me thinks you’ve been on too high a dosage for too long?

[SurferGuy in reply to Suvi8901]

Ive never really had proper tapper instructions. I've just been told to reduce gradually.

I was so close to the 2.5mg a few months ago, until the antibiotic flare up.

I'm on 10mg now, aching a little but hoping that's my body getting accustomed to the 10mg. Then all being well, after 2 weeks going to drop to alternating between 10mg and 5mg (7.5mg). Do that for 2 weeks, then down to 5mg, and then see how it goes from there.

[Corcan in reply to sabine]

Thank you

[Suvi8901]

Your question is actually TWO questions:

1.HYDROXYCHLOROQUINE can cause retinal eye problems (well known) as a rare side effect hence it’s necessary to see an ophthalmologist regularly and before starting the drug to get baseline optical data and

2. Does lupus have eye and/ or optical nerve involvement independently of drug side effects? 🧐👆

Perhaps some experts can help on here?

[StriatedCaracara in reply to Suvi8901]

Re Optic Nerve, as well as direct inflammation, I've read impaired immune regulation can impact

1. The article below says how Neuromyelitis Optica Spectrum Disorder (NMOSD), also called Devic disease and lupus can occur together, going as far as saying for some “lupus myelitis” may be NMOSD.

lupus.net/clinical/nmosd

2. There have been reports that Neurofibromatosis type 1 (NF1) might co-exist causing tumors visual pathway nerves (optic pathway gliomas).

The following paper suggests that lack of neurofibromin in NF1 could be related to the SLE autoimmune disease due to this impaired immune regulation

ncbi.nlm.nih.gov/pmc/articl...

[Suvi8901 in reply to StriatedCaracara]

Thanks for this.

[StriatedCaracara]

Eye symptoms caused by autoimmune disease

There can be lots of eye symptoms:

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

It can be an early manifestation. Here is a paper giving one example:

scielo.br/j/abo/a/D94VgvQV9...

Ophthalmologists sometimes make the initial 'rheumatology referral' if they find symptoms suggestive of systemic autoimmune disease when looking for something else.

[Suvi8901 in reply to StriatedCaracara]

Many thanks.

[Fredhouseboat]

Yes indeedee!! For decades. Conjunctivitis and Sjogren s affects my eyes intensely.

[StriatedCaracara]

Impact of having covid on progression of symptoms - including the start of eye symptoms

My symptoms started pre-covid but I think having covid, at the beginning on the pandemic prior to vaccination being available, has possibly impacted on disease course.

Following covid Spring 2020 my progression of symptoms was:

1. Dryness (eyes, mouth, gut during the Summer)

2. Episodes of kidney pain ( Autumn 2020 onwards)

3. Photosensitivity, sore scalp and rashes (Spring 2021 onwards - I had just had first AZ jab)

4. Eyes issues - including photophobia (Autumn 2021 onwards).

Would be interested to know if any others who have recently had eye symptoms (e.g. dryness, photophobia, after images, headaches affecting eyes) feel there might be a link with having Covid.

(I was chatting to someone else who after covid had photophobia for first time - again in the Autumn. So know I'm not alone...but there may be others...?)

[StriatedCaracara in reply to StriatedCaracara]

Does anyone else notice a seasonal link with when different symptoms started?

For me both kidney symptoms and then eye problem of photophobia (I think due to uveitis) started in the autumn.

What is the cause? Does immune complex, formed maybe more in the summer or when there is emotional stress get dumped in kidney and eye tissue in particular in the Autumn?

Does wearing sunscreen protect our kidneys and eyes by reducing circulating immune complex ...as well as stop immediate flares

ncbi.nlm.nih.gov/pmc/articl...