Author Topic: sjogrens cant cause blindness can it?/  (Read 2088 times)

valene2009

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sjogrens cant cause blindness can it?/
« on: February 24, 2012, 06:58:58 PM »
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....

quilt4fun

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Re: sjogrens cant cause blindness can it?/
« Reply #1 on: February 24, 2012, 07:39:01 PM »

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---
 
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Joe S.

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Re: sjogrens cant cause blindness can it?/
« Reply #2 on: February 24, 2012, 07:42:39 PM »
Plaquenil can cause blindness.
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valene2009

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Re: sjogrens cant cause blindness can it?/
« Reply #3 on: February 24, 2012, 07:44:41 PM »
plaquenil can cause blindness? even if you are checked regularly with dilation???

anita

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Re: sjogrens cant cause blindness can it?/
« Reply #4 on: February 24, 2012, 08:42:54 PM »
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. 
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

DragonflyC

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Re: sjogrens cant cause blindness can it?/
« Reply #5 on: February 24, 2012, 08:58:32 PM »
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.
 
« Last Edit: February 25, 2012, 04:16:09 PM by Linda196 »
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valene2009

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Re: sjogrens cant cause blindness can it?/
« Reply #6 on: February 24, 2012, 09:22:06 PM »
do i have to see a retina specialist? do i have to have my eyes dilated 2x a year or once??thanks everyone

eyeamdry

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Re: sjogrens cant cause blindness can it?/
« Reply #7 on: February 24, 2012, 11:58:54 PM »
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
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anita

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Re: sjogrens cant cause blindness can it?/
« Reply #8 on: February 25, 2012, 06:15:44 AM »
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. 
« Last Edit: February 25, 2012, 06:19:28 AM by anita »
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

valene2009

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Re: sjogrens cant cause blindness can it?/
« Reply #9 on: February 25, 2012, 07:51:30 AM »
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?

Joe S.

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Re: sjogrens cant cause blindness can it?/
« Reply #10 on: February 25, 2012, 12:41:37 PM »
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.
bkn C4 & C5, herniation's 7 n, 5 t, 4 l, Nerve Damage
Lisinopril, Amlodipine, Pantoprazole, Metformin, Furosemide, Glimepiride,
Centrum Silver, Cinnamon, Magnesium, Flaxseed, Inositol, Goldenseal, D3, ALA, ALC, Aleve
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valene2009

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Re: sjogrens cant cause blindness can it?/
« Reply #11 on: February 25, 2012, 01:24:09 PM »
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

Nancy60

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Re: sjogrens cant cause blindness can it?/
« Reply #12 on: February 25, 2012, 01:29:58 PM »
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

Nancy60

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Re: sjogrens cant cause blindness can it?/
« Reply #13 on: February 25, 2012, 01:39:20 PM »
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

valene2009

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Re: sjogrens cant cause blindness can it?/
« Reply #14 on: February 25, 2012, 06:12:37 PM »
wow. Nancy..that really made me feel better... thanks so much!