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tgal
10-04-2012, 10:28 PM
Well I went to get new glasses today and was in for a big surprise. No new glasses for me until I go see a specialist because it appears that I have Ocular Neuritis or inflammation of the optic nerve. I have to say the way I figured it out was very interesting and had I known what to look for I would have known about it much earlier but this post isn't about that. This post is to remind all of you that once you have been diagnosed with ANY AI disease it means that there is inflammation in your body and you have to keep an eye on ALL parts of yourself, including the eyes.

Get your eyes checked yearly and pay attention to pain and changes not just because of meds but because of disease. If you notice that you see colors differently from one eye to the other go in to see the eye doctor even if it is not time for your yearly appointment.. You only have one set of eyes and they have to last.

magistramarla
10-06-2012, 08:58 PM
Mari,
My ophthalmologist insists on seeing me twice a year because I take Plaquenil. He wrote a letter to the insurance to make sure that they understood that it is a medical necessity.
Hugs,
Marla

BonusMom
10-07-2012, 06:23 PM
Great reminder, Mari!

I had my annual exam recently and not only were changes noted in my vision, but changes in the eye pressure (which is an indicator for glaucoma).

Don't take your vision (or health) for granted.

Nonna
10-10-2012, 05:04 PM
Glaucoma tests, field vision test, retina scans and oh regular vision test are necessary for us. There is nothing scary than to be sitting at your desk at work and see blood start snaking through your eye. It was a hemorrhage.

Eye Care is very very important for us.

tgal
10-10-2012, 05:27 PM
I have debated and debated on posting this but I really think it is important.

The eye test is about the yes but it is also about more than the eyes. About 5 months ago I realized I could not see! I mean it, my vision had become very bad and I really couldn't see well at all! As most of you know I have been waiting and waiting for my Medicare (2 1/2 years) and it finally began Oct 1st. To me, my eyes were the least of my issues and I figured I would deal with them somewhere down the line. Well, that is what I thought until I lost my glasses on Oct 2nd. If I thought I couldn't see WITH my glasses I sure couldn't see without them (just in case you are interested I lost them inside my house and have yet to find them). The loss of the glasses moved the eye examination to the front of the the line.

Everything went well during the first part of the test, no issues caused by my meds. I thought I was home free. We went in to the exam room to figure out my prescription. They pull the machine in front of my face and we begin. "Which is better, 1 or 2? 2 or 3". On and on until we got that eye where it needed to be. Now the doctor says "OK, on to the next eye and she switches the machine so the other eye is covered. I gasped because the entire room changed colors. Yes, it changed colors. Long story short it turns out that I have Optic Neuritis in one eye. The problem wasn't actuallt my eyes it was that there was inflammation in my optical nerve (the nerve that runs between the eye and the brain) so the messages were not going through. It also explained the headache I had on that side of my head for months and never mentioned because I just assumed it was "another lupus thing".

I couldn't get my glasses because I have to go see an ophthalmologist on Friday (I had seen an Optometrist who had all of the machines to test my eyes for my special needs) but the good news is that the Optometrist could already see that the shot of steroids that I had received the day before appeared to be working and I can tell that it has continued to work so I am feeling very positive at this point.

That is why I started this thread. They eye check-ups see not only the eyes but further inside and they can help protect us from damage we don't notice. As the stories above have all shown, don't put those appointments off!

magistramarla
10-10-2012, 09:10 PM
Mari,
I am so glad that you are finally getting the care that you need.
Hugs,
Marla

tgal
10-15-2012, 09:28 AM
Good news! The steroid shot (in addition to the 40mg of steroids I take every day) made the inflamation in the optic nerve go down. All is well on the eye front! I have to go back in 3 months to have it looked at but for now we are ok!

chikititalinda
10-15-2012, 11:39 AM
That's great news, I know exactly what you mean. I've been putting my exam off until I can be covered in January. I can only be covered every two years. I know my vision is getting worse and honestly its starting to scare me. With all the doctors I see and meds I take I just can t afford one more copay, I've said it once and I'll say it again OUR HEALTH CARE SYSTEM SUCKS! I'm glad you're finally taking care of your vission and what ever damage happened is reversable.

magistramarla
10-19-2012, 04:50 PM
Mari,
Good news! Be sure to go back to see the ophthalmologist twice a year because you are on Plaq.
Hugs,
Marla

Shine
11-20-2012, 07:54 PM
I just want to second what tgal has said here..I have always worn glasses and contacts so went for my routine eye exam the other day. They found swelling of my optic nerve by looking the digital retinal image and did a couple of extra tests. Thankfully it is not severe enough to have caused any vision issues and the ophthalmologist is happy to leave it at that as long as I mention it to my rheumy on my next visit and get in contact if I notice any changes at all to my vision.

It's important to go, whether you need prescription lenses or not. The eyes give so much away. My brothers kidney failure was picked up by a routine eye exam - who'd have thought it! It's especially important for those of us taking plaq & pred (although I don't think my opthalmologist understood the relevance of plaq as she called me back in 2 years for my general exam...i pointed out that I should see her sooner as I'm taking plaq & pred and she said I can pop back in 1 year for a general eye health check - pressure testing etc - if I would like. Yes i would like!!!)

So please, everyone go, it's worth 30 mins just to know whats going on.

tgal
11-20-2012, 08:01 PM
I just want to second what tgal has said here..I have always worn glasses and contacts so went for my routine eye exam the other day. They found swelling of my optic nerve by looking the digital retinal image and did a couple of extra tests. Thankfully it is not severe enough to have caused any vision issues and the ophthalmologist is happy to leave it at that as long as I mention it to my rheumy on my next visit and get in contact if I notice any changes at all to my vision.

It's important to go, whether you need prescription lenses or not. The eyes give so much away. My brothers kidney failure was picked up by a routine eye exam - who'd have thought it! It's especially important for those of us taking plaq & pred (although I don't think my opthalmologist understood the relevance of plaq as she called me back in 2 years for my general exam...i pointed out that I should see her sooner as I'm taking plaq & pred and she said I can pop back in 1 year for a general eye health check - pressure testing etc - if I would like. Yes i would like!!!)

So please, everyone go, it's worth 30 mins just to know whats going on.

You need a new doc! For those of us taking Plaq. we need to see the eye doc at least once a year but most eye specialists suggests 6 months. After finding optic nerve swelling they are requiring me to come back in 3 months to check on it since it can cause irreversible vision loss.

Just my thought on the matter. I completely agree with your thoughts on everything else!

Shine
11-20-2012, 08:07 PM
Hmm. Maybe she doesn't have a great understanding of Lupus - like many healthcare practitioners - and was only bothered about whether it affected my eyesight or not. I think thats another thing to write on the list for the rheumy! Deary me this list is getting longer and longer and longer......!

Thanks tgal :)

tgal
11-20-2012, 08:31 PM
It sounds bad but the first question that should be asked of all eye doctors is if they know what a plaquenil eye test is. You will be surprised how many do not. There are special tests that have to be performed on our eyes to make sure that the plaq is not damaging our eyes. There are also other tests that need to be performed to make sure that the other meds that we are on (steroids, MTX to name a few) are also doing no damage.

Standard eye exams (even the digital imaging) are not enough for our eyes. The kind we need cost more (of course) but are very, very important. You should have one the moment you start your plaquenil so there is a baseline of where your eyes are right now so they can see if there is any deterioration in the vision. The sad part is that many people starting the medicine either don't know that or go to an eye doctor that doesn't do the right kind of testing (which is what I did). We assume they know and they don't. Even worse is when they say they know but they don't.

Good luck and you are on the right track asking more questions

Saysusie
11-20-2012, 09:55 PM
This is a great thread Tgal, thank you for starting it. I am glad that you are OK for now and that the prednisone helped. Your story was entertaining while being a lesson to us all. Have you still not found your glasses???? :-)

Again, thank you for reminding us how important it is to care for each and every part of our bodies..including the eyes.

Peace and Blessings
Namaste
Saysusie