[blueisis]

Hi

Since Ive upped my steroids at the end of last week, the left eye pain and dropping and blurred vision I seem to get has completely disappeared and Ive noticed this before when steroids are increased to higher levels.

I have spent numerous hours at St Thomas Opthalmic Dept and whilst they have found iritis on numerous occasions and have taken photos of the back of my eye to keep a record (Kings also found I had optic neuritis when originally testing me for MS 3 years ago, when they found I had sle!).

My concern is that whilst my consultant is concerned at the eye symptoms I have, she doesnt really know what the problem is, although she does acknowledge there is a problem. She had a muscle test carried out to see if my eye dropped/drooped after looking up for 2 minutes, which it did, and she then tested me for myasthenia gravis (fortunately negative).

My concern is that as I say, since upping my steroids to get my sle under control again, my eye is not causing me any bother, so to me and my husband that confirms that there is an inflamatory thing going on there, what do you think?

Ive now had this problem for nearly 3 years and since I upped the pred last week, it has got worse over the past couple of months or so, to the extent that I have to take pain killers due to the pain behind the eye. Im loathed to go back up to London again until March when I have my appointment (although I can always ring if I need to and she will see me, she has said) as every time I end up going there, she cant find what the problem is. It can clearly be seen drooping in photos we take when it happens, which she acknowledges but I wondered if anyone had any thoughts on this at all please as Im at a loss. I dont think its an age thing (Im 44 years young lol with the body of an 80 year old at the moment!!).

Thanks in advance!

Hugs to you all

Julia

 

[Lily]

Hi Julia,

That is of particular concern :hug:

What meds are you usually on for your Lupus, it sounds like they need to reassess them. The optic neuritis could probably be treated with Immunosuppressants which would take care of it long term, rather than patching it up with Pred now and then?

love
Lily

 

[Zoi]

Hi Julia,

I'm sorry to hear about all you're going through at the moment.... Vision/eye problems can be incredibly scary....

Is the optic neuritis a recurring problem or have you had it once? Optic neuritis can certainly cause pain behind the eye; I remember finding it hard to even talk at times from how strong the pain behind my eyes was due to the neuritis... I don't know if iritis could cause pain behind the eye, or if muscle problems in the eye could cause that sort of pain... Is the pain connected to the eye drooping or is it un-related?

Eye problems in lupus can be quite complicated, but it's very good that your doc is being thorough with the tests and that your symptoms are responding to the increased steroids!! :bigsmile: :thumbs:

What kind of meds are you on for your lupus, besides the pred, at the moment?

One other thing is, lupus-related optic neuritis is often associated with something called Hughes' syndrome or APS; an autoimmune disorder that makes the blood more prone to clot. Do have any idea if you've ever been tested for it?

Hang in there :hugbetter: :grouphug2:

:foryou:

Zoi

 

[blueisis]

Hello to both of you and thank you for taking the time to repond.

I have sle and aps and many other medical problems including heart problems and I am currently on about 20 meds in total with about 5 others to add in as required. I take 400mg Mon Wed Fri and 200mg the other days of plaquinel. I also take fludrocortisone .5mcg to 200mcg depending on symptoms as I also suffer from an autonomic problem called postural orthostatic tachycardia syndrome (pots for short - its a mouthful at the best of times lol).

I suppose what really bothers me is that I have had my pred increased and once again with that increase the eye symptoms have got better again. I have only had one test which revealed the optic neuritis and no follow up test as all my consultants are at St Thomas' now not Kings.

Im awaiting a response to my gp's fax on Friday to the sle clinic, marked urgent, which they say that they have got and my consultant came back yesterday from hols so maybe we might hear something as my gp doesnt really know what to do at the moment with all the other symptoms Ive been getting recently (see other posts recently).

Once again, thanks so much for your input; if you have any other comments they would be gratefully received.

Hugs to you all

Julia x

 

[acard]

Julia,
I just wanted to tell you that I am currently suffering severe pain behind my left eye and have had changes in vision. I am seeing a neurologist. I will let you know what I find out. It may not have anything to do with what you have, but I just thought I would share since it is so very similiar.
I have been suffering from this for over a month and it is getting worse.
I had a TIA and seizures in December. I really have not a clue what is causing my eye problems. I have not been dx'd yet with APS.
Keep us posted on your progress.

Hugs,
Becca

 

[tbunny1]

I too developed optic neuritis that was responsive to prednisone - 80mg to be exact! What a mad woman I was then!

To be safe, they ordered a MRI scan of my brain, that has led to a entire host of new diagnosis and treatment, included being diagnosed with APS. Has your neuro ordered a MRI yet?

I was told that optic nueritis was quite unusual for SLE, but very common with a flare of APS. Have they tried changing your anticoagulant dose?

The good news is after about 6months I went from legally blind to recovering 95% of my vision. I really think it was due to the aggresive prednisone treatment, but we are all, of course, different in how we respond to these things. Be Well ....

 

[JudifJ]

Hi Julia

I've been having eye pain and blurred vision for quite a while. The pain goes with prednisolone but the pred makes the blurriness worse. Just found out that I have nystagmus as well. I've not been diagnosed with APS yet (though positive Lupus anticoagulant) but I think the neurological symptoms are due to vasculitis damage (seen on CT). I am going to see an opthalmic optician tomorrow (faster than referral to hospital, as recommended by my GP) so I'll let you know how I get on.

Hope your eye is settling down now.

Love Judi XX

 

[Reggie]

Sorry to hear you are having problems with your vision. It is extremely painful and scary.

I have been experiencing loss of vision due to optic neuritis over the last year due as my SLE has been out of control. I did respond short term to high dose Methaprednisone pulses in hospital.

In the long term it was a combination of immunosuppresents and rituxan that have stopped the progression of me losing my sight.


I wish you well and hope things get under control soon

All the best
Peta

 

[blueisis]

Hi all

Thank you for all your comments and responses.

I cannot have an MRI as I have a pacemaker. However, when I go to St Thomas in March to see my Opthalmologist I will ask her to do a CT scan (she has been threatening to do one for 2 years now!) to see if that shows anything up.

The eye has settled down again on the higher dose of pred (which it always does) so to my mind that proves there is an inflamatory condition going on.

Hugs to all

Julia x

 

[Zoi]

Hey Julia,

Have you ever had VEPs done? If you can't have a contrast MRI visual evoked potentials are a good way of telling if the nerve itself has a problem (de-myelination, inflammation etc) or if the problem lies outside the optic nerve. It's a pretty fast test, completely painless and not at all annoying (no needles or anything, just some gel on your head!) Here's some information on VEPs:

http://www.mult-sclerosis.org/VisuallyEvokedResponse.html

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

Hope the appointment with the opthamologist goes well!

Zoi