Sjogrens and Eyes

[Haired]

Hi,

I have Sjogrens and Lupus. On Rituximab Infusions. I was wondering if anyone has had little dots floating across their eye. ( just my right eye at the moment. )

I have the usual dry eyes and photosensitivity which has been very annoying of late. I find lights in shops very hard on eyes. I wear my sun glasses with slight tint when in shopping centres. Attend Dermatilogist and Rheumatologist just wondering if anyone has problems with eyes .

Many thanks M.

[dg70]

Have you had your eyes checked recently? I have sjogrens and lupus and occassionaly get floaters like you. I go once a year to a private ophthalmology clinic and get a full check up with scans and Schirmer's test etc.. takes about an hour but when your on hydroxy you need an annual check up really. I recently upped the level of eye drop I take to a slightly stronger one which I use along with the actimist spray after. If you can't afford it or haven't got one near I suggest you go to your gp and get a referral to an nhs ophthalmologist just to check if anything is going on. It might be a bit of a wait at the moment though with the nhs as it is. Opticians may help but a consultant ophthalmologist is always better to see if you can. Any longish eye issue I would go to see someone just in case. We want to hang onto our sight. 🙂

[Haired in reply to dg70]

Thank you so much for your reply. The floaters are coming and going the past few days. Last time I had floaters for,a few days went to optician and he said all was fine. I have an appointment for infusion next week will speak to the nurse. Again thanks for your help.

[dg70 in reply to Haired]

Good idea. Before I was diagnosed a couple of years ago I was getting floaters and blood shot right eye nearly every month. I ended up with an eye cyst which was very uncomfortable. I did get my sjogrens diagnosis when they cauterised it though. I have learned to be more concerned and push for investigation more since then. Hope it goes well for you. Try and find a good eye clinic too if you can.

[Haired in reply to dg70]

Thanks again. I am in Dublin HEALTH SERVICE works differently. I do go to optician very regularly but have not been to an ophthalmologists . Will try and get Apt with GP for referral next week like in UK very hard to get an appointment with GP . Have a good day.

[Simonebirds in reply to dg70]

Hello again , I must get my eyes checked , I get floaters but many ppl do who do not have sjogren’s . I need to make an appointment soon . Things are blurry at times as well .

[dg70 in reply to Simonebirds]

Yep mine were blurry for years but my glasses prescription didn't change. Three opticians didn't pick up sjogrens even though I said my eyes run water like mad and often blurry and mouth dry. Every single on missed it for years. Aparently my ophthalmologist said blurring is common with dry eyes. You're constantly trying to focus through runny or dry eyes and they can't keep up with constantly changing eye conditions. It makes sense.

[harmony2 in reply to dg70]

uggh. Really disappointed so many have history of being missed/not diagnosed with classic symptoms which should trigger a referral for screening for Sjogren’s! I am sorry.

[dg70 in reply to harmony2]

Yep missed at least five times with dry eye over several years by opticians and ophthalmologist. They should have picked up dry eye let alone sjogrens. I never even got eye drops each time I went. I had a blood shot eye every month which was brushed aside but since eye drops no blood shot eye at all for nearly two years. I am lucky there's no lasting eye damage but I had to have a cyst cauterised on my eyeball which was not fun. I hate to say it but it was the internet that put me onto my growing list of symptoms which I could then relay to the Ophthalmologist when I had my cyst done. Luckily he knew about sjogrens and knew of a specialist nearby, shear luck I met him as other ophthalmologists/opticians passed it by. I am telling opticians and doctors and nurses in my practice to look out for this because you really suffer with dry eye and my practice nurses had never even heard of sjogrens syndrome and nurse prescribers seem to see patients a lot more than they used to. The ones who have heard don't always realise it affects the whole body not just eyes and mouth. It just needs a higher profile in the UK, in the USA its much more recognised. We all need to do our bit and try and get it as recognised as some other autoimmune conditions. Thanks for the sympathy it just helps that someone hears and understands. My heart goes out to all those who suffer and get brushed aside, sent home undiagnosed and no follow up.

[dg70]

Tell me about it it's tough getting appointments even in england. I'm still waiting after 6 months to go from private rheumatologist to NHS. It is recommended to go every year to an ophthalmologist if you're on hydroxychloroquine especially after 5 years on it because of eye damage that often occurs. They can catch it early then. I've spoken to two ladies locally who wish they'd never taken hydroxy because of the irreversible eye damage they have. That's why I go every year to an ophthalmologist. An optician is not enough when it comes to monitoring your eyes properly.

[SjogrensinTexas]

I have Sjogrens and RA. When Sjogrens is flaring, I have very active floaters and sensitive to certain light including mobile screens. I have a blue light filter on my eyeglasses that does seem to help. I see my ophthalmologist every three months for macular degeneration as well, as he also is watching cataracts. You may want to verify you have not developed cataracts as that can be excruciating with certain light. Ophthalmologist has a specially compounded eye drop for me that helps with the dryness and irritation. Restasis irritated my eyes, so bio developed drops work best.

[Haired in reply to SjogrensinTexas]

Thank you so much for your reply. I been trying to get an appointment with my GP to discuss and ask to be referred to an Ophthalmologist as the light sensitivity has been a lot worse in the last few months. I am using drops for dry eyes but not sure if it is helping. I sometimes feel people dismiss people with Sjogrens - Oh you have dry eyes 👀

Thank you again for your help. ( I am in Ireland)

[harmony2 in reply to Haired]

dismissive attitude. So true!

[weathervane]

Hi Haired , Im on rituximab for primary Sjögren’s. I have had floaters for a couple of years, the optician says it’s nothing to worry about, ive also had an Ophthalmology review and told my eyes are fine . They don’t really bother me too much, though i do think they are worse when im particularly tired . I’ve always found the optician very helpful and his tests were similar to Ophthalmology!!!!

Take care Happy Saint Patricks Day ☘️☘️

[Haired in reply to weathervane]

Thank you for your reply.

I am feeling very fatigued at the moment so maybe that is the problem. I worry about any change in eyes as my father had glucoma and my Brother who has MS lost the sight in one eye during COVID as he delayed having eyes checked. I have apt with Optician tomorrow and will see Rheumatologist six weeks after infusion will discuss eyes and blood pressure when I see him.💚☘️

Yes St Patrick’s Day here and it’s raining as usual but celebrations will you go ahead anyway. Thanks again for your help. Marian

[harmony2 in reply to Haired]

good you are aware that your fears are heightened. Self-awareness is beneficial. Not having glaucoma or MS you probably are different. It’s good to remember if your self talk gets out of sync with reality.

Possibly ask these staff you will soon see what your symptoms mean and what the risks are (or where you can read more).

Maybe ask if there are any symptoms for which you should always come back to clinic. So you know what is significant to report.

[weathervane]

Its dry here at the moment which will be good for parade !! See if your optician can do a scan of the back of your eyes as well, worth paying for as will keep a record .

Hope all is well, do let us know how you get on , our sight is so important, best wishes, enjoy today xx

[Haired in reply to weathervane]

I had appointment with Optician and he said all looks ok . He did all the usual tests and also dilated pupil and all looks,ok. I have an appointment with GP in the morning . I also have skin lupus which the Rituximab Infusions with maintenance steroids ( 2.5 & 5 alternate days) has really helped. Does anyone have burning in legs and arms? It has started again in the past 6 weeks, skin on arms and legs very sensitive.

Thanks everyone for your help.

[weathervane in reply to Haired]

So glad your optician appointment went well and the gp . I do get pains down my arms , particularly bad before I started treatment. I take pregabalin which seems to help , though if i have a flare and lymph nodes get enlarged things get worse . I don’t know if you have a rheumy nurse , I would contact her if i have issues or leave a message with my rheumys secretary .

Take care x

[Haired in reply to weathervane]

Thanks for update. Was with GP yesterday and he would hope Infusion over the next few weeks will improve symptoms. consultant prescribed amitriptyline over a year ago for burning pain.I take half a tablet at night as they make me too groggy the next day.

Take care x

[Oscaromega]

I have Primary Sjorgrens syndrome and am cared for by Rheumatology. I've been taking hydroxychloroquine tablets for over 5 years and receive annual eye checks from NHS Eye Clinic. So far so good.

I also pay for a thorough eye examination by my optometrist, annually.

I have recently experienced the floating black dots which you describe and which for me are different from 'floaters' which are usually linear.

My optometrist discovered a tear in my retina last week and sent me directly to the NHS emergency eye clinic who repaired this with laser treatment.

I'm not sure if the black dots were anything to do with my damaged retina but maybe this needs to be checked out.

All the best,

[Haired in reply to Oscaromega]

Hi, thank you for reply. You poor thing that must’ve been very frightening.

. I did attend Optician on Saturday and he dilated the pupil checked for torn retina, he also did other tests including glucoma test.I saw GP this morning and he said if anything changes particularly flashing lights to call immediately.I am due to see my Dermatilogist newt month and will discuss with her . She is very proactive.

One last question do you get burning in your legs and arms especially in the evenings?

Thank you Marian

[Oscaromega in reply to Haired]

Hi Marian,Good to hear you've had some thorough checks.

I don't get the burning you describe.

All the best

Liz

[Haired in reply to Oscaromega]

thank you for reply. I describe it as burning as it feels like bones in my leg from the knee down are burning. My consultant calls it pain. It can feel very hot in legs and arms from elbow down. On the areas where Skin Lupus was worse ( below skin). Rheumatologist prescribed amitriptyline but I only take half of five mils at night as I am medication intolerant. Take care.x

[harmony2 in reply to Haired]

I get flashing. Was told same so went in. Given speedy appointment which I was impressed by. Just to calm you and others, in the end, not all flashing is emergency. It can be but quite rarely. Get checked out but attempt to not panic. Peace.

Ps. Burning in feet. Tingling and sensation of ant bites in legs. I finally got to see Neurologist. Nothing identified as awry. So common. So many symptoms but the doctors cannot understand why. It’s frustrating because of course we would like relief. Sjögren’s is minimally understood and, I believe, affects more systems of our bodies than scientists currently understand. If possible, this is a plea for all of us to support research, even if very small amounts. 🙏🏽