i just read a scary website that said in severe cases it can cause blindness. i was told by numerous docs that sjogrens doesnt cause blindness?? now im worried.. can it cause blindness if left untrreated? i mean if we keep up on our docs visits , drops , pressure checked etc .it wont cause blindness right???
yikes the internet is beginning to scare me gals and guys.. please help so i dont have an outright panic attack..
will my fellow sjogie friends on here help settle my nerves? i just took an extra xanax.. yikes....
Sorry, I can't answer that question. But I do think that it's important to have those regular visits and exams and discuss any concerns we may have. Please don't panic---
Plaquenil can cause blindness.
plaquenil can cause blindness? even if you are checked regularly with dilation???
Plaquenil can...in extremely rare cases...cause damage to the retina which can lead to permanent damage or blindness. This can be avoided if you have regular 'thorough' checks. By in large, Plaquenil is safe...but it's very important to see your ophthalmologist every 6 months to a year.
I have never heard that Sjogren's itself can cause blindness. After reading this and some of your other recent posts, maybe you should not read so much online. There are too many horror stories out there and you have to be careful what you read...not knowing the source. The stress and anxiety you are creating on yourself is probably more damaging then anything you're reading.
It's sounds like you are very proactive about your health care. Try not to worry...trust your instincts. I think you're heading in the right direction and staying in tune to your body. You'll be okay.
Sjogren's can cause problems for our vision, so you'll want to use eye drops regularly and see your eye doctor once or twice a year. If you do that, you shouldn't have to worry about blindness.
As for plaquenil, here's my favorite explanation from Dr. Daniel Wallace's The Lupus Book: "My pet peeve is that too many lupus patients have been frightened away from antimalarials by doctors who warn them about potential eye toxicity. First of all, quinacrine does not affect the eyes in currently used doses. Second, eye toxicity caused by HCQ is extremely unusual [. . .] If a lupus patient sees a retina specialist every 6 months, the deposits will be noticed before they cause any symptoms, and if the drug is stopped, the deposits will disappear in weeks."
People with any AI disease take about the same dosage of plaquenil (usually 400 mg/day), so this information applies to us, too. Dr. Wallace is considered an expert in rheumatology (he has also written books about Sjogren's); he's definitely a reputable source.
do i have to see a retina specialist? do i have to have my eyes dilated 2x a year or once??thanks everyone
I am no medical, but I've been "involved" in dry eyes and like conditions for 12 years after I had Lasik surgery. Sjogrens came a few years later. Lasik does damage many eyes and makes very many more dry. I have never heard of a person going blind from dry eyes and I think the answer to this would be no. But, nothing is ever 100% but so many ppl on here are afraid to try new things to feel better and that bothers me.
I was so sick with SJS I was face down on my couch and couldn't even lie on my back or sit. If I had rejected the meds I'd probably be totally incompasditated. If the meds/drugs bother a person, stopping them usually fixes the problem. Lucy
Quote from: valene2009 on February 24, 2012, 07:22:06 PM
do i have to see a retina specialist? do i have to have my eyes dilated 2x a year or once??thanks everyone
You need to see an ophthalmologist once or twice a year. I still go twice a year. Both times they dilate my eyes. Some people now say once a year is enough. It's entirely up to you (and your insurance). If you will be more at ease, then go twice a year and get dilated both time for a thorough check.
There are other checks they perform besides dilating eyes. Your exam should include color blindness checks as well as peripheral vision check.
And I saw on your other thread: It doesn't need to be a specific retinal specialist...a reg ophthalmologist will do find.
thanks . i guess i was getting scared by all the stuff i read... i am going to talk with my doc wed about how often i need my eyes dilated and all the tests ran.. i have only been going to him for 4 months and he hasnt done any of the test yet-he had said once a year is enough.
my eyes and mouth dont feel any different on plaquenil.. i dont feel any different.. after about 18 months of it i feel the same -is this normal?
Mine was only for 6 hours until the drug was out of my system. Go ahead and try it. It is very unusual for some one to experience what I did.
ive been on it almost 20 months.. i will calll my doc on monday and see if they should dilate my eyes wed to check
I would talk with your Rheumy about how the Plaquenil is working for you.
Since it takes several months for it to build in your system, the improvement might be so subtle you don't really notice it that much.
I know several people who have commented that they didn't realize how much it helped until they went off of it (for various reasons) and went into a major flare. (don't do this without talking to your doctor first!)
Plaquenil works by reducing inflammation (they aren't sure how it does this) to help get the disease itself undercontrol. If you are tolerating it well, I wouldn't stop as it may be keeping things from getting worse. That being said, if you are still having symptoms, you might want to talk to you doctor about if you need additional or different medications. Methotrexate is sometimes added and most people also take NSAIDS for arthritis pain.
I think a talk with your rheumy is in order to get all your questions and concerns answered.
Let us know what your rheumy says.
Nancy
I have been on Plaquenil since 2005 and only have annual eye exams by an Opthomologist. He does lots of testing each time I go including visual field tests, dilation and exam of back of eye, pictures of my retina, glaucoma check, color blind test etc... He is at a major medical center and works closely with my Rheumatologist's practice. He said in 30 years of practice he has only seen 3 cases of Plaquenil toxicity damage and each of those were caught early enough that stopping the Plaquenil was all that needed to be done, they didn't have any permanent loss of vision and weren't even aware of the visual field loss until they were tested.
Try not to worry about it too much, the worry and anxiety are not good for autoimmune diseases either!
Nancy
wow. Nancy..that really made me feel better... thanks so much!
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
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.
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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
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
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.
soycoffee.. what was supposed tomake me feel better? i got a little stressed reading your post.. yikes...
Quote from: valene2009 on February 26, 2012, 08:10:25 AM
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
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....
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.
thanks for the book recommendation.i am going to see if the library has it. :) thanks Soy
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.
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
My eye doctor says I have to keep corneas in good shape otherwise I can become blind - I hope this helps - Scary though !
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
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