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Posted By : Meph - 5/2/2007 10:51 AM
I started Plaquenil in February, and at that time my rheumy informed me that there is a risk for vision disturbances and that I should see an opthalmalogist (sp?) every six to 12 months.

Last week my eyeglasses broke so I went to the store where I bought my previous pair. The prescription from that eye exam has expired, and I need a new exam to get new glasses.

Called my Rheumy to see if he'd give me a recommendation for an opthalmalogist (I try to keep all my treatment at Vanderbilt Med Center so all my doctors can access my charts). The nurse called back and gave me tremendous attitude - "your chart says nothing about an eye exam" and "I don't see why he'd give you a referral if it is not in your chart." Soooo... I kept my temper and explained that I was under the impression I'd need that eye appointment because of the Plaquenil and instead of paying for an optician exam as well, I had hoped to kill two birds with one stone. She hasn't called back and it has been a week and I really need new glasses.

Were you all told to get a baseline exam at the start of Plaquenil treatment? I am mystified as to why this nurse acted like I was making stuff up. Have any of you experienced vision problems from Plaquenil, and how soon did they become apparent?

Thanks, as always. Hope you all are enjoying a nice Spring day.


UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP


Posted By : omega - 5/2/2007 11:06 AM
I would complain if I were you.  She had such an attitude
People who take Plaq needs to have eye check up (Opthamologist) every year or every 1/2 year
I am one rare case that have Plaq toxicity in my eyes that I needed to stop immediately.  I did not develop vision problem but was discovered eye problem by Optometrist when I got my prescription.
It really depends on your weight and the dosage you are taking w/regard to eye problems.  It is pretty rare that people taking Plaq develop eye problems.  I took it for years on and off, and only till last year I developed problem.  The rhum said because I weight less and took dosage that considered high for me.
Eye prescription is Optometrist.  It is different from Opthamologist.  I doubt it if you can kill two bird at one time. 
 

Posted By : Lynnwood - 5/2/2007 11:11 AM
Yes, it is standard to have an ophthalmologist exam every 6 mths or 1 yr when taking Plaquenil. (My rheumy says 1 yr is ok, as problems very seldom develop.) I don't know of anyone here who has had any problems. If you do have problems, with the 1 yr exam they will be caught and are reversible by stopping the plaquenil.

The nurse is the crazy one, NOT you! Do you need a referral to see an ophthalmologist? I didn't have one, just picked one a friend was happy with that was on my insurance plan. You may not need to get anything from the crazy nurse.


Lynnwood, Co-Moderator: Lupus Forum
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Posted By : CityGirl - 5/2/2007 11:20 AM
A baseline exam is important as well as yearly or bi-yearly exams. I am not sure why the nurse was so ugly to you for simply asking a question about your own healthcare. I would follow up with that and be sure to let her know she will not be behaving in such a manner again.

I see a retinal specialist for my exams. I do need a referral but it is covered under medical, not vision, as it is part of my lupus treatment. It really varies by insurance plan I think.

Problems are very rare but it is always best to be sure.

Posted By : starzphalling - 5/2/2007 12:53 PM
i am also one of those rare cases, i went to my first 6 mo. checkup (my dr stressed going every 6 months). and i was told to immediately stop taking the plaq. my problems were noticeable, i was having problems with my night vision (it had gone down so bad, and i have the bruises to prove it tongue ) also my eyes became very sensitive to light, the dr said that these were symptoms that could lead to further problems and they didn't want to risk it so now i save $150 a month on meds tongue well good luck with your check up, and you are a better person than me, i would have told the nurse to shove it, but then again i have an attitude hehe tongue
have the best day you can,
starz

Posted By : elcamino - 5/2/2007 1:23 PM

Yes, you should have a baseline exam once starting plaquenil and then a 6-12 month check-up.  I do it every 12 months.  I have no idea why the nurse would have given you an attitude about that?  Makes no sense to me.  I got a referral to an opthamologist from my primary, not my rheumy.  Definitely follow up with an opthamologist, though.

 

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Posted By : Meph - 5/2/2007 1:32 PM
I appreciate all the replies. Omega, I did check with the clerk at the eyeglasses place; I can definitely get a prescription for glass lenses and contact lenses when I go to the opthalmologist.

If I don't hear from the nurse by the end of the day, I will call my GP for a referral. I prefer to have referrals from my existing medical team because it seems to make for better communication all around.

Will let you know how I make out. Thanks!


UCTD, Pulmonary Vasculitis, Discoid Lupus, Asthma, Hypothyroidism, Sleep Apnea
Meds: CellCept, Plaquenil, Elidel, Levoxithyroxin, Bactrim, Lamictal, Lexapro, Xanax, Zonalon, Zyrtec, Rhinocort, Prilosec, Advair, Combivent, O2 as needed, CPAP


Posted By : dbab - 5/2/2007 3:53 PM
I also had to get a baseline exam prior to taking the Plaquenil and my rheumy was very serious when he said not to take them until I had the exam. They have to examine you to see if you have anything of concern that they can determine that is NOT caused by Plaquenil which is why the baseline exam is important. If your exam showed something after taking the Plaq, then they would not be able to determine if it was caused by Plaq or was pre-existent. I sure hope you complain as well, that was very uncalled for on her part and she should be reported.

Good luck and take care


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Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Naproxen 1000mg, Xanax XR 2mg, Miralax 17g, Supplements


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Posted By : cassy.t - 5/2/2007 4:23 PM
i'm glad the plaquenil is not doing that bad on ya'll, it's making my sis life miserable! she used to have the best vision, now she can barely keep her eyes opened. she thinks there opened but there not. she sees double. she had 20/20. now she's almost blind, but they can't take her off that med, she's been on it for years. there trying to take her off the prednizone, so she has to stay on the plaquenil atleast. What would you all do in her position??? and i'm sorry for ya'll illness, and i'll keep you all in my prays, i see what she's going through, and i could only imagine.

Posted By : Jasonsmith - 10/15/2011 4:14 AM
omega said...
People who take Plaq needs to have eye check up (Opthamologist) every year or every 1/2 year
I am one rare case that have Plaq toxicity in my eyes that I needed to stop immediately.  I did not develop vision problem but was discovered eye problem by Optometrist when I got my prescription.
It really depends on your weight and the dosage you are taking w/regard to eye problems.  It is pretty rare that people taking Plaq develop eye problems.  I took it for years on and off, and only till last year I developed problem.  The rhum said because I weight less and took dosage that considered high for me.
Eye prescription is Optometrist.  It is different from Opthamologist.  I doubt it if you can kill two bird at one time.
 
Looks like you can't send a private message on this forum. But I was wondering if you don't mind what your dosage/frequency and your weight was when taking Plaquenil?
 
I ask because I may be starting soon on Plaquenil and am afraid of toxicity.
 
I have read that when you figure up the dosage of Plaquenil, that you want to go by your lean weight and not your actual weight. As they say Plaquenil doesn't get stored in fat. 
 

Posted By : Latina_B - 10/15/2011 1:08 PM
As all the others before me have said it's best to check your eyes every 6 to 12 months. I've only started taking plaquenil for 2 years now and have checked my eyes twice. My last visit to the opt. Was in sept. He told me I had to see a retina specialist. It's very rare a patient on plaquenil would start to have problems this fast, he said normally after the patient has been taking plaquenil for 5 years and over they start to have problems. I'm quite concerned with this. Hope I don't lose my eyesight :(
FieRce AgainsT LuPuS
Brenda

Posted By : Jasonsmith - 10/15/2011 5:59 PM
Latina_B said...
As all the others before me have said it's best to check your eyes every 6 to 12 months. I've only started taking plaquenil for 2 years now and have checked my eyes twice. My last visit to the opt. Was in sept. He told me I had to see a retina specialist. It's very rare a patient on plaquenil would start to have problems this fast, he said normally after the patient has been taking plaquenil for 5 years and over they start to have problems. I'm quite concerned with this. Hope I don't lose my eyesight :(
Why did he tell you to see a retina specialist? Did he notice something? Or just throught the retina specialist would be better at looking at your eyes instead of him?
Was the doc saying after taking it for 5 years that the risk is likely of having eye problems?
Some say toxicity is rare, and only occurs mainly in people taking too high of a dose. But then you read alot of people having problems, and looks like the eye problems isn't so rare.
If you could ask the retina specialist how rare or likely it is to have eye problems with Plaquenil. Please post back what he says.
Thanks

Posted By : Lynnwood - 10/15/2011 6:27 PM
Did you mean an optometrist send you to a retina specialist? Or an ophthalmologist?

The OpTOMetrist wouldn't know about retinas, but a OpTHALMalogist would.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Posted By : Latina_B - 10/15/2011 10:48 PM
I meant my opthamalogist. I always get two eye appointments. A general one and a special one I guess you could say. The general one was just fine. Only that my vision has gotten slightly worse. Now when I went to get the special eye exam: it's where they cover one eye and you are looking into half a sphere shaped thing. Which ever eye that isn't covered is focusing straight to one dot and with I don't know how to explain it otherwise but with the rest of your eye you will see lights flashing. And every time you see a light flash you will press a button. I have done this twice so far.

So when I was waiting for next appointments and such the nurse called me back in and she had the doctor with her. He said: my results were the same as last year but just slightly worse... *~* And that patients start to have problems after they've been taking plaquenil for 5-10 years. I on the other hand have only taken it for 2 years and so he referred me to a retina specialist. He's a little concerned since I AM on plaquenil and wants to have a deeper look into the matter. This is what he told me. I have an appointment one the 24th. I'm completely booked this week and the next with so many appointments. No fun >.<

And as for the dosage of plaquenil, I never knew they figure it out by your weight. I was first 200 1x a day because I was borderline Lupus for a few months. After they saw that plaquenil was helping they upped the dosage to 200 2x a day. And that's pretty common for Lupus patients.
FieRce AgainsT LuPuS
Brenda

Posted By : Jasonsmith - 10/15/2011 11:00 PM
How did they say they figure the dosage up by weight? I know they go by lean body weight. Which is less than your actual weight.

Posted By : Latina_B - 10/15/2011 11:04 PM
LOL I don't know. This is the first time I ever heard about it.
FieRce AgainsT LuPuS
Brenda

Posted By : Jasonsmith - 10/15/2011 11:11 PM
You might want to double check. As I've read that they recently changed the recommended dose based on body weight. I guess they are saying the old figures were a little too high. Not sure when they changed the recommendation though.

Posted By : Latina_B - 10/15/2011 11:14 PM
Well I guess I could ask my Lupus doc when I see her on the 25th. :/ and ask her how they know that my dosage of plaquenil is really the right amount. I'll just have to add it to the "complaint list". If I learn anything I guess I'll let you know.
FieRce AgainsT LuPuS
Brenda

Posted By : Jasonsmith - 10/15/2011 11:21 PM
I had read 3mg per lb of lean body mass. Another way I've read is 6.5mg per kg of lean body mass.

Not sure if that is the up to date figure or not.

Posted By : Jasonsmith - 10/21/2011 1:13 AM
Bump for Omega. Wish you could send PM's on this board.

Posted By : tweezybird - 10/21/2011 12:54 PM
I've been on Plaq for about 5 or 6 years now.  My Rheumy had me start eye exam by Opthomologist 1 time a year.  I've heard you all mention exam, I also have a test, called a Plaq test to look for Macular Degeneration.  Eye doc said it's rare but they like to watch for it.  You stick your face into the front of machine and they flash dots and you have a clicker in you hand to let them know each time you see it.  They also give me a chart with a grid on it to take home and check it every so often to see if the lines start to look wavy.
 

Posted By : Jasonsmith - 10/21/2011 3:42 PM
tweezybird said...
I've been on Plaq for about 5 or 6 years now.  My Rheumy had me start eye exam by Opthomologist 1 time a year.  I've heard you all mention exam, I also have a test, called a Plaq test to look for Macular Degeneration.  Eye doc said it's rare but they like to watch for it.  You stick your face into the front of machine and they flash dots and you have a clicker in you hand to let them know each time you see it.  They also give me a chart with a grid on it to take home and check it every so often to see if the lines start to look wavy.
 
There's also a color blind test that is recommended as well.

Posted By : Hobbits2ndbreakfast - 4/7/2014 3:21 PM
Im stumped. My doctor never said anything about getting a baseline BEFORE starting Plaq. I am however going to see an opthamologist, but I already started taking the med. I also din not see anything in the medication instructions, or on the pharmacy printout that said the eye exam has to be done prior to get a baseline. The instructions printed on the meds say vision issue can be a rare side effect, so a yearly exam is recommended.......where does it say to get a baseline prior to taking meds? and why wouldn't my rheumy have told me this?

Posted By : GweniePooh - 4/3/2017 10:14 PM
I have been on Plaquenil for 25+ years now. I was told in the beginning of treatment to have a baseline eye exam as a preventative exam for possible issues of the eyes arising from the Plaquenil. I was also told to have these exams every six months which I have done. My Opthamologist also does refraction (exam to fit glasses) so I was able to have both exams from the same doctor. Not all Opthmologists do refraction.
My last exam is showing early signs of Macular Degeneration and the Opthamalogist indicated she was recommending that my Rhuemie take me off Plaquenil.
From what I've read here it seems we all get different information on the same issue. This is why I love the forums- at least we have a safe place to compare notes and share experiences.

My best wishes and prayers for improved health to each and everyone.
Thanks for sharing.
smile

Posted By : Lynnwood - 4/4/2017 7:13 AM
Plaquenil and Your Eyes rolleyes

Here is an eye test that is easy for all of us to do online, without going to the doctor right away. Scroll down after you go to this site until a graph shows up with a dot in the center. Look at the dot with one eye at a time, and if the lines change, then you might need to see the doctor. Instructions & more information is available on the page.

Check Your Eyes

Of course, this in no way means you shouldn't see a ophthalmologist at least once a year - be sure to tell them you take Plaquenil!
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

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