sjogrens cant cause blindness can it?/

[Patze]

And I've been on it since 2005 as well with no peeper problems so far.  I too have my eyes dilated and thoroughly checked twice and sometimes three times a year depending.

Nancy has a good point, talk to your doctor about getting your eyes checked regularly with the opthamologist, and hang in there, okay?  Developing Plaquenil toxicity is a bit unusual and my opthamologist has only seen a few cases with no serious loss of vision.

Take care of yourself -

Patze

[eye2dry]

Hi Valene2009.

When I started on Plaquenil my rheumy said to have my eyes checked twice a year. Then last fall after a check up with my eye dr. he said "see you in a year" I asked him why not every 6 months like my rheumy said. He told me he recently went to a seminar and the topic was Plaquenil and it is now only necessary to check eyes once a year.

****************************************
on a side note, some friends of ours son was diagnosed with a high RF and vasculitis. he suffered terribly  with stomach pains for months and could get no diagnosis, finally ended up at Cleveland clinic and got diagnosed with the vasculitis after removing 7 inches of his small intestines which were necrotic (dead).

the family went to an Auto Immune seminar to hear drs. and nurses speak.

The drs. said their  most frustrating problem was patients would not take their medications. They said pts were more afraid of the medicines than their disease.


eye2dry

[hootyhu1]

the american acadamy of ophthamology has recently changed how they screen for retinal toxicity

200mg of Plaq. require an annual visit with dilation, visual field, (color vision is no longer acceptible screening anymore but we still do it) and they now recommend an OCT-Ocular Coherence Tomography.....it is really cool!

if you are on 400mg or more than every 6 months..........and I have been in the field for 15 years and I have only have seen 1 case of retinal toxicity.....hope this helps.

hootyhu

[soycoffee]

Valene, anxiety is a good thing when it gets you to the doctor's for the right checkups, and when you can then accept their reassurances.

I'm going to raise your anxiety about another thing, and then reduce it, I hope to zero.

There is such a thing as corneal blindness, or corneal opacity, due to a chronically dry eye that has no tear retention/production. If you have a full check up for dry eye, retinal damage, as mentioned above, it will be found in good time.

Remember to ask if they have checked.

I was able to resolve corneal opacity in my right eye in three months, by doing a bit extra for dry eye.

I don't get anxious to the extent of panicked, but I do obsess about questions raised by the Sjögren's diagnosis. In my case, I managed to ignore the possibility (other than losing my teeth) for 12 years, until Venus Williams's diagnosis. Then I did a ridiculous turn around and had to check out everything on the web. And that led to checking out more things on the web. and so on.

I *do* want to know everything possible about the disease and its treatment -- everything possible that I can understand, anyway. Then, I tell myself, I can relax. It's under control, I've done all I need to do, at least until the next question.

I'm hoping I get bored, pretty soon. My last appointment in a long string of appointments, is this coming Friday. I'm responding well to Restasis, and to pilocarpine. My neuropathy is under control. I've got Provigil for another reason, to deal with fatigue, more or less.

I've got some rashes, and I will keep seeing my rheumy, at least until I've told him everything that *might* be important.

Signal anxiety is a good thing. It helps, though, to *think* about it, not just feel it and expand it and blow it up into "what-if" scenarios, that won't happen just because you are anxious right now.

A good antidote when anxiety gets out of control is to practice the routines in the book The Relaxation Response, by Herbert Benson. Once you learn some of these responses, YOU will have control, not the disease, not the pills you take, not the doctors, *you* will be in charge.

Much success,
Soycoffee
P.S. Even taking pills for anxiety can either be a surrender of control, or as I think you actually do, a way to say *I* won't let this anxious feeling run away with me right now.

[valene2009]

soycoffee.. what was supposed tomake me feel better?  i got a little stressed reading your post.. yikes...

[soycoffee]

soycoffee.. what was supposed tomake me feel better?  i got a little stressed reading your post.. yikes...

Val,
Your initial question was about Sjogren's causing/bringing about blindness. Then the discussion jumped on the risks from Plaquenil. That discussion emphasized the checkups with a qualified OPHTHALMOLOGIST, and the types of tests needed. I knew that there was another risk of blindness with Sjogren's and other causes of dry eye.

Everyone had lulled you and comforted you and reassured you that regular exams would protect you from the very rare possibility of problems with your retina.

I went back to your original anxiety -- about blindness, not about Plaquenil. The information about Plaquenil is fine. If you have a real fear of blindness, rather than of taking Plaquenil, you should have the additional information that dry eye can bring about a condition known as corneal opacity. I had it: one eye could see only dimly, as if through a window covered with ice and snow. I got better. 

So, A. I don't want you to be falsely reassured that you won't go blind at all. You should be reassured that chances of going blind from Plaquenil are remote.
      B. If blindness is your concern, rather than receiving constant reassurance from this forum, or second guessing your doctor on Plaquenil, well, then, the truth is that dry eye does carry some risk of blindnes by making the cornea -- the colored part of the eye -- opaque.
      C. The good news on that is that the same great ophthalmologist you are going to see for the retina checkups, the same great ophthalmologist you will insist does a thorough eye exam, will certainly catch any early dimness in your cornea, as well.
    So, D. You are just as safe as you were when you thought all you had to worry about was Plaquenil.

That's what was supposed to make you feel better.

Soycoffee

[valene2009]

ok thanks Soy!  so you hadthe blindness but it got better ?? that is wonderful news.. so i guess they caught it in time.. i hadnever heard of that type of blindness.. is it pretty rare?  sorry if i am asking so many questions but i appreciate your candor !   glad you are doing so much better... the things we take for granted huh....

[valene2009]

Soy
how did you find out you had corneal opacity?  was your eye getting blurry?  did you have to use special drops??? i go to the doc every month so i am prob ok-i get dilated 1 x a year.. that is all insurance will pay for.

[valene2009]

thanks for the book recommendation.i am going to see if the library has it. thanks Soy

[meow]

I do the peripheral vision test twice a year, as I have  a cataract in each eye and they want to see how that's working out.
I actually like that test. You put your face on the machine, stare at the dot in the middle, and press the joystick whenever you see a flash of light anywhere. They are dim, bright, random all over. I consider it a personal challenge. The last 2 times I got every single one.

[hootyhu1]

meow,

You are the first person in 15 years that has ever said they, "like the visual field test"....you just made my day!


Val,

I agree with Soy that you just have to trust the ophthalmologist that you see to prevent "blindness" you can have a lot of complications from dry eye in general but your doc will keep you on the right track.

Once you establish your 'team' of doctors everything will fall into place and you shouldn't feel so stressed about it all. Hope this helps=hootyhu

[Virgi]

My eye doctor says I have to keep corneas in good shape otherwise I can become blind - I hope this helps - Scary though !

[eyeamdry]

This is a can of worms that will keep going on and on.   Can we get on another subject?  Not everyone will be convinced one way or another on this and will worry themselves to "mental blindness." :-)

It's like asking "will I die?"                               Lucy

[Virgi]

eyeamdry (lucy)

I came back to see if there were new posts on this subject and read your reply - very dissapointing even with the smiley at the end of the phrase -

with all due respect, there´s always the option of not reading this thread if you think this subject is through.

let others express themselves without putting us down.

thank you