[karenj7777]

Hi Everyone,

I know it's mentioned off and on, but do any of you suffer from serious eye problems? I cannot see well at night anymore and the sun either blinds me or seems too dim.

Sometimes it's blurry 3 feet away other times not bad.
Not to mention the floaters or little jumps while reading. I had Lasik and 20/20 vision prior to this mess called Lupus and the eye Drs watch me closely but even stopping Plaquenil did nothing. Non glare glasses, etc.

During a hospital stay in Boston a new doc saw signs of old retinal scar or detachment, but the problems still wax and wane. She was also worried about Glaucoma from the steroids so I tapered because it does run in my family. Sometimes when I blink it seems almost white or foggy. It's one of my worst issues. I thought the myoclonus/body twitching was bad, that's something I can treat! Back on Imuran and crossing my fingers. Thanks for your thoughts and experiences.

Bless you,
Karen

 

[JoD]

I have similar symptoms. I also have migraines and develop a temporary circle area that loses sight..it is gray in color. There is a thing called ocular migranes. Severe headaches don't have to occur with them.
Joanne
http://www.allaboutvision.com/conditions/ocular-migraine.htm

 

[Zoi]

Hey Karen,

I have eye troubles due to recurrent bliateral optic neuritis.

There's a lot of eye disorders (and general disorders causing eye troubles) that can cause problems with one's night vision ranging from a mild difficulty to complete night blindness. Lasik can also indirectly cause problems with one's night vision.

Do you have very thin corneas? I was going to have lasik done for my myopia when I was 17, but I had a corneal mapping test done before and it showed I have very thin corneas. My corneas are also conically shaped, thicker in the center than they are around the edges. That is a sign of a pretty common corneal disorder called keratoconus. Now keratoconus by itself may or may not cause eye troubles as it might continue making one's corneas thinner and thinner over time or it may just stop progressing and not cause any harm.

However people with keratoconus and people that just have thin corneas should not have lasik done as it can make them night blind and cause all sorts of vision troubles.I'm not saying that's what you have obviously, but it might be worth asking your doc if you've had a corneal mapping test done to check how thin your corneas are both before and after your surgery...

Re the blurriness you mention: is it accompanied by any other symptom? Headache, eye pain, pain in the eyes or behind the eyes with movement? How long does it last generally? When it fades does your vision go back to being 100% ok or is it a little more blurry than it was before?

Glaucoma is an incredibly sneaky disorder; it's good that you are off the steroids since it runs in your family. Do you have regular eye checks for it? Is your eye pressure ok then?

:flowery:

Zoi

 

[karenj7777]

Hi Zoi,
No my cornea mapping and the Lasik were all fine. It wasn't until other lupus sxs started my vision was affected. They did treat me for optic neuritis a few months ago, but he couldn't be certain that was actually occurring. What was your experience with that? So steroids again, it did improve the blurring, but not the light problems. It never goes back to 100% anymore. I get checks regularly but he just feels it's part of the "systemic issue" and can't have much to offer. Seeing him next week just to followup. Nice intelligent doc.

We have the low pressure glaucoma in my family on top of everything! So that is usually close to normal. I just pray it doesn't get worse. When I have a flare it's intolerable, eyesight isn't like sore hands.

Thanks for your thoughts,
K

 

[Zoi]

Hey Karen,

Ah! Brilliant news about the corneal mapping! I'm glad that was all ok!

Re the optic neuritis: why couldn't he be sure it was occuring? Was it that when he was looking into your eyes the head of the optic nerve appeared normal? Did you have an MRI with contrast when you had the optic neuritis? See, there is a form of optic neuritis called retrobulbar neuritis during which the head of the optic nerve (the only bit that's visible to the eye doc during an eye exam) appears perfectly healthy because the neuritis is behind the optic nerve head, further back (if one can say that). Retrobulbar neuritis can be diagnosed via its clinical signs; specifically pain when moving the eye affected, blurry vision, sometimes colours kind of lose their sharpness (mostly red and orange) and RAPD (which is a problem with pupil dilation when light is shone in the eyes). There are also some tests that can be done that are more "objective" and can help docs determine what's going on; one of them is an mri with contrast and the other is something called visual evoked potentials. The VEP test is fast, completely painless and can help determine if there's damage or inflammation to the optic nerves. Here is a link with some information on what the test entails:

http://en.wikipedia.org/wiki/Evoked_potential

Lupus-related optic neuritis generally responds well to iv steroids in the short-term. In the long term, especially if this is a reccuring problem for you, better disease control is required to stop the optic neuritis from returning and causing further damage. The imuran may help you a lot in that respect.

Have you been tested for APS? APS is an autoimmune disorder, like lupus, that makes one's blood more prone to clot; sometimes people with lupus have it but one doesn't need to have lupus to have it. Lupus related optic neuritis and other cns lupus troubles are sometimes caused by either aps itself or by lupus and aps together. Of course they may just be caused by the lupus itself, but if you haven't been tested for aps you could discuss the possibility of getting tested with your doc. You can find more information on APS in the "related conditions" part of this forum!

I agree with you. Eye problems can be incredibly scary. I always found it helpful to bear in mind that lupus eye troubles generally respond well to meds and that the inflammation caused by lupus in the eyes or in the optic nerves generally fades away without leaving much damage. The damage caused by these things is often cummulative, so really what one wants in situations like this is to stop the problem from recurring. I hope the imuran helps you loads and that it stops the optic neuritis from coming back for you...

Hang in there Karen! There is light at the end of the tunnel; it just takes a bit longer to get there sometimes

:flowery:

Zoi

 

[karenj7777]

Zoi,
Thanks for all the info, I will respond more later.
Mostly thanks so much for the encouragement. I really need it today.
Thanks

 

[KarolH]

Hi Karen,

Not sure if I welcomed you, sorry if I didn't.

I have had on going issues with my vision since 2005 when I lost the vision in my one eye completely. I was dx with MS and 3+ years later told no MS, it is Lupus and APS instead.

Optic Neuritis is sometimes indicitve and common in MS. I would suggest you go to a Neuro Opthamologist for a consultation. These guys are the best with the eyes and issues with the eyes.

Have you ever had a OCT scan done or had your visual field checked? Ever had a visual evoked response test done? All things that help paint a clearer picture.

I now know that most of my vision issues come from APS and I will probably always deal with weakness when it comes to my eyes.

I hope you get things straightened out and get some definite answers.

Good luck and keep us posted.:wink2::wink2::wink2:

 

[Katharine]

Hello there and welcome

I just wanted to say that it sounds like you are being thoroughly investigated and that it is always best to wait for results and discuss them with your doctors. Take each thing as it comes. Everyone's case is different. The most important thing right now is that you are following this up and your docs are taking you seriously.

Try not to frighten yourself by listening to too many other accounts or stories on the internet.

hugs :hug:
Katharine

 

[Maz0252]

I'm glad I'm not the only one. I wasn't sure if night blindness was part of this or not.

Used to have perfect night vision. Passed my test in May this year and couldn't wait to drive at night. All was ok until one night I freaked out in the car as I couldn't see anything. Still is an enormous struggle. Didn't realise this could be part of it though...

 

[karenj7777]

Hi Karol,
Yes I've had the OCT and sure he will do another one next week. He is adamant I have systemic illness and that's why my eyes are acting up.

I've been through the MS testing and the only thing in my spinal fluid is ANA! They never had that show up before. The night blindness happened when all my other symptoms flared but even dim light now bothers me a great deal. The optho can see a small spot on my retina and doesn't know what it is but that is most likely part of the problem.

My IGG is low again so I don't know. The drs in Boston all say lupus I live elsewhere and it's taking a bit longer for them to accept that although they seem to be coming around. Surely anemia isn't helping blood get to my eyes etc. Or my brain so forgive the typos. I'm trying to stay positive. One of the problems is my most helpful and trusted dr has started to shut down and I know it's time to move before a crisis hits but this is a small medical community so I keep praying she will get a second wind. My heart tells me it's time to put my family first and find someone else but what if they are worse. Sorry for venting. The thought of finding yet another dr is taking it's toll this week. And watching my husband upset is worse than anything I deal with.

Thanks for all your help and advice. As long as I can read a little I'm happy!

 

[Zoi]

Hey Karen,

ANA in your cerebrospinal fluid can be indicative of cns involvement (i.e. the neuritis) as far as a systemic disease like lupus is concerned.

You know, sometimes when one has optic neuritis because one’s vision are hence “eyes” are affected they don’t realize optic neuritis is actually not an eye disorder per se, the eyes themselves remain perfectly healthy whilst the optic nerves become inflamed and sometimes damaged. Optic neuritis thus, when talking about disorders like lupus, aps and ms being behind it, is a sign of central nervous system involvement of those diseases. I always found that puzzling that’ why I’m mentioning it; healthy eyes but vision troubles and at the beginning I kind of had a hard time realizing it wasn’t “problem with the eyes equals vision troubles” in this case but “problem with the central nervous system (or immune system to be more accurate causing cns problems) and not the eyes themselves equals vision troubles”.

I don’t think anemia has much to do with getting blood to your eyes or optic nerves unless it’s incredibly severe, but I understand the bit about trying to stay positive. I understand that very well. One of the things that helped me when I was going through endless dances with neuritis was the knowledge that I could come here and talk to friends and vent and cry and be sad and that I didn’t need to stay positive all day long. Trying to be positive is excellent but there’s absolutely nothing wrong with being sad and upset and mad at the world for a little while; it can actually even help at times!

I think your heart is telling you the right things here; if you’re having communication problems with your doc by all means get a second opinion on what’s going on. Eyesight is nothing to play around with!

Sorry to ask this but you said “as long I can read a little I’m happy” and I was wondering does the regular font on the forum’s webpage make your eyes tired or is it hard to see the writing sometimes? I may be way off base here, but If that is the case there’s so many simple things you can do to make your life easier by magnifying the text and changing the contrast of the page etc. Please don’t hesitate to ask if you’re having such problems; there's always a solution out there! :bigsmile:

Hope that helps a little bit,

Zoi

 

[karenj7777]

Hi Zoi,
I've always thought the ANA in my CSF meant neuro lupus which I have a slew of symptoms but the experts say they aren't sure what it means. I meant that reading is difficult because after a flare a year ago vision in my left eye is disorted and I see double quite often especially around white objects.
And one of the only things that improved my vision was toradol and that would fall into inflammation.

I find my eye muscles seem to get fatigued like my others also. So thanks for saying I don't have to be positive all the time because I hate this right now. I want my vision to normalize and I am grateful to see though I would go back in time to 20/20 if I could! The anemia comment is b/c my oxygen saturation in my blood is low so that cause potential problems which would worsen not cause the eye issues. Anyway, thanks so much again.

I had a great drs appt with a genetics dr today and am hopeful she will be able to help sort out if this is just lupus or if everyones correct and I have an overlap. So some light in the day as you mentioned.

 

[Zoi]

Hey Karen,

Your oxugen saturation is low? Because of the anemia? Yes, that could indeed affect the eyes you're absolutely right.

Neuropsychiatric lupus or npsle or cns lupus has 19 different distinct "syndromes" or manifestations; optic neuritis is one of them. Here is a link with some information on cns lupus:

http://www.lupus.org/webmodules/web...w_healtharticles.aspx?articleid=459&zoneid=29

There is also some sticky threads, not sure if you've discovered them or not yet but I've found them pretty useful at times, in the symptoms part of this forum; they're called "neurological presentations in rheumatology" and "the eyes and autoimmune disease" and you can find some more information there along with a list of the 19 syndromes I mentioned in relation to npsle.

You see double around white objects? Do you then also see double sometimes with the white background of internet explorer? There are ways you can switch the background from white to black and make the letters orange (especially easy if you have windows vista) or variations of that as a black background is sometimes less confusing, less glare-y and less tiring for the eyes.

Of course you'd go back to 20/20 if you could!!!!!!!!!! I'd be really worried for you if you wouldn't!!!!! Is that out of the question completely? Has there been damage done to the nerves themselves or is it possible that with the right treatment your vision will return? What do your docs think?

I'm glad to hear you had a good appointment with the genetics doc! That's very good news indeed!

Zoi

 

[karenj7777]

Hi Zoi,
I've been pretty ill for the past few so sorry I've not gotten back sooner. Yes I see glare around white/light objects. It seems to be worse on some days like all symptoms. I hate it! The again it seems to be muscle weakness I can start out seeing fine and the longer I watch/read the worse it gets. There's little question I have CNS involvement but the neurologists don't treat lupus and the rheums don't treat neurological problems so I get stuck in the middle. Not sure what your experience is but the eye dr see's the trouble just doesn't know how to improve or relieve it. Steroids as we discussed worsen the glaucoma so...I hope the Imuran really kicks in this time. Usually my labs go up and they take me off it but this time we are really limited. The iron infusion didn't hurt either, four more so cross your fingers that will help also.
How are you doing?

 

[Zoi]

Hey (((((((((Karen)))))))) :hugbetter:

I’m really sorry to hear you’ve been ill the past few days…

Yep thought you might have some trouble with glare; that was one of the things that bugged me quite a bit on the laptop etc too. There is a webpage (don’t mind it’s content, it’s pretty irrelevant to anything really, just a charity site) I know of that has contrast adjustments on it so you can check out whether a black background to orange or white letters is better for your eyes without actually changing any of the settings on your computer yet. The webpage is:

www.actionforblindpeople.org.uk

When you go to that page, on the left hand side you’ll see different symbols/signs (a minus sign, a plus sign, a T in a normal frame and then below it a yellow T in a black frame etc). Press the button that has the yellow T in the black frame and the page will re-load with a different contrast. Look it over for a little while. Do you find that contrast better (i.e. less tiring etc) for your eyes??? If so you can change the settings on your computer to that (feel free to pm me if you don’t know how; it’s pretty simple in windows!) and that might help a little bit…

Re the rheumy vs neurologist dance you seem to be going through at the moment; I do realize optic neuritis by itself (and in lupus) is a neurological problem and that maybe neuros know a bit more about it than rheumies do, but rheumies on the whole know a lot more about lupus symptoms and lupus treatments than neuros do (at least that’s what I’ve found so far). Now I have two neurologists for all the lupus and aps neurological stuff I’ve had as well as an eye doctor and a kidney doctor but they all, without exception, “answer” to the rheumy who is always in charge of treatment and all medical decisions. If I go to the neurologist and he thinks I’ve got something lupus or aps related he picks up the phone and calls the rheumy and they discuss it, the same goes for the kidneys and the eyes. I see it as a kind of decision making tree of sorts, with the rheumatologist at the top. This helps keep symptoms/discussions of treatment/comments etc from being lost from doc to doc….

Now of course your rheumy does not treat neurological problems that don’t stem from rheumatologic diseases but do you mean to say that he won’t treat your lupus-related neurological problems?? It is truly not the norm for rheumatologists to not treat lupus related optic neuritis themselves and to leave the treatment completely in the hands of a neurologist who may or may not have much experience with lupus cns stuff and lupus treatment, as treatment for optic neuritis has to do solely with getting one's lupus under control more often than not. Have you been going to your rheumy for a long time? Is he the one that put you on imuran? Imuran is a med that is used to try and get one's lupus under control and to thus stop the recurrence of any lupus related eye trouble too....

Yes, the eye doctor wouldn’t know much about lupus related optic neuritis treatments if anything. That is exactly why cooperation and discussion between one’s docs is vital. The eye doc might know what the matter is with your eyes but might not know how to treat it, the neurologist might be able to run tests etc to tell you if the optic nerves are inflamed and/or damaged etc but the rheumatologist is the one who will guide everyone (yourself included) on treatment options and prognosis.

Iron infusion??? For the anemia??? Why not iron pills??? Did they not help enough??? Does the infusion help??

I'm ok; thank you for asking! My eyes have been stable for a while now and whilst I've had my ups and downs at times with other lupus and aps stuff things seem quiet on all fronts at the moment so something must be working! :bigsmile:

Keeping my fingers, eyes and toes crossed for you and hope you feel better very very soon… :grouphug2::grhug::hug: :fingers:

:flowery:

Zoi

 

[karenj7777]

Zoi,

"ANA in your cerebrospinal fluid can be indicative of cns involvement (i.e. the neuritis) as far as a systemic disease like lupus is concerned."

Can you elaborate, the drs here do not seem to agree on the ANA and even why it's in my fluid..they never normally test for it so I guess it's baffled quite a few drs. But they also argue over whether I have lupus with an ANA of as high as 2560 seems silly to the drs in Boston. Yet, I hear it.

Thanks for your helpful advice.
Karen

 

[Zoi]

Hey Karen,

Oh, that's a complex question! I'll attempt to answer you but bear with me here, maybe even get some coffee and crisps too to stay awake whilst you're reading this :lol: , as it might get a bit technical.

First of all, to start with there are 19 recognized neuropsychiatric manifestations of SLE. They can be found at:

http://www.thelupussite.com/forum/showthread.php?t=48000

Needless to say, optic neuritis is one of the 19 neuropsychiatric manifestations.

Now comes the tricky bit. There is no recognized blood test or csf test that can establish the diagnosis of NPSLE (neuropsychiatric lupus) without doubt. An NPSLE diagnosis is commonly made by taking into account the patient’s clinical manifestations combined with MRI and/or MRA findings and a multitude of blood and csf tests some of which may or may not be helpful in confirming a diagnosis and/or detecting cns flares.

To wit think of SLE without cns involvement and C4 and C3 levels. People with lupus frequently have low complement levels in their blood and for those people who do complement levels may or may not be useful flare markers. What I mean is you can have two people with lupus that have low complement levels and in one of them they may be low all the time or go up and down without any correlation to flares and in the other they may go down right before or during a flare.

Well the same goes for CNS lupus and blood and csf tests. Some of the antibodies in the blood associated with NPSLE are: anti-ribosomal P, anti-NMDAR, NMO-IgG antibody (neuromyelitis optica antibody), aquaporin-4 antibodies (AQP4 antibodies)and of course ANA. A positive ANA in the CSF has also been linked with CNS lupus or lupus central nervous system manifestations (like optic neuritis) as well as elevated CSF-protein levels, low CSF complement levels and low IgG levels. The problem with all of the above is that absence of those antibodies and normal levels of csf protein, csf complement etc do not signify one does not have NPSLE. It is only their presence that may be helpful in determining whether lupus is responsible for a symptom or not and even then the findings must be combined with MRI and/or MRA reports and symptoms for a conclusive diagnosis.

Here are some articles you may find helpful re autoantibodies and serological findings in NPSLE:

http://www.curehunter.com/public/pubmed9773091.do

http://rheumatology.oxfordjournals.org/cgi/content/full/41/6/605#FX1

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0003347

http://www.medscape.com/viewarticle/574557

http://www.sciencedirect.com/scienc...serid=10&md5=91fc62ed0b3dd1bf39c5ef81867fe542

Now you have a positive ANA in your cerebrospinal fluid, you also have a positive ANA with a titer of 1:2560 and optic neuritis. I don’t know whether you have MRI findings or not or whether you’ve had an MRI or not, but I’d say the above combined is indicative of central nervous system involvement in your lupus. Of course that is just me.

By the way, your docs in Boston what do they say about the ANA in your CSF?

Hope you’re doing ok,

:flowery:

Zoi

 

[karenj7777]

Zoi, I like technical but I will grab the crisps and coffee before I read your reply. :lol:

 

[karenj7777]

Zoi,
It's also the docs in Boston too who aren't sure about the spinal ANA. One said that made him sure it was Lupus and the other docs are unsure since they do not usually look for that in their workups -what to make of it.

I have never been told it was optic neur for certain but they were in a hurry to treat it. The descriptions seems like I've had it and may be in a flare of it right now. I see the optho on Weds. I have chronically low IGG without IVIG treatments-torture- and low protein, potassium, iron, and most recently carnitine. That 2560 is I believe the highest level my ANA has ever been with treatment it is sometimes 1:160 but usually higher.

I will review these articles and get back to you. How do you know so much, have you been diagnosed with CNS lupus. You have such knowledge of it and the best book I've read is the newest OARL clinicians guide. Seems like there is great reluctance with the diagnosis. It's like the cardiologist saying my heart valves,etc look like what you would see with Lupus but never would he be the one to make that call understandably. Not sure why the rheumies seem to want a neuro to make the CNS diagnosis.

My MRI's have been largely clean. A possible arachnoid cyst, which resolved as did asymmetrical ventricles on the right which came and went. And chronic sinus disease for which I had surgery Monday. They took a nasal biopsy, collapsed something in the left nostril and just saw inflammation in general. So we shall see if the biopsy or inflammation bring anything. Being on steroids and nasal meds obviously didn't clear the inflammation so I hope this brings my Rheumatologist to do more-he was on holiday this week. Wonderful stoic doctor which is great, I need help not a friend. Though he's very nice and wants to help but my docs looks for me to get the docs in boston to direct meds, etc. Which is hard to do when you cannot travel from being sick. Plus Boston said they feel it's Lupus with some other overlapping illness. I need a physician here to take the reins over fast.

Let me review your articles sorry for the long post. But I agree with you what more are we looking for in terms of saying this is hurting my CNS and how best is it treated?

Thanks so much,
Karen

 

[adorable]

Everyone's case is different. That's my doctor always told me... The SLE gave me lots eye problem - severe dry eye syndrome, drusens and glaucoma aside from knee osteoarthritis and body weakness. In a year time my grade goes up and up seems that few years ago, my vision is 20/20 now my reading is 375 and distance view 100. Having a visual problem is expected with our condition and nobody knows what part of us will suffer from this illness what matters is life will goes on in God's will.
8)

^_^ adorable