Eyes, plaquenil, and thanks

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Maenad
Regular Member


Date Joined Mar 2008
Total Posts : 20
   Posted 5/25/2008 11:03 AM (GMT -7)   
First, the thanks: Thank you all for being here! You scare the bajeezus out of me and talk so openly and are so supportive. On the hours of the days when I am willing to believe my diagnosis (denial is fabulous, when I can manage it! scool ), this is all so so so incredibly helpful.

Now, the question: Has anyone else refused plaquenil for fear of losing your eyesight? Has anyone had vision problems from taking it?

Everything I've read says there is a danger of losing your eyesight from long-term use of plaquenil (as in, the way lupies need to take it) if you have certain eye problems, which I do have. I understand the risk is small, but so far when I weigh possible blindness (I only have useful vision left in one eye as it is) vs the pain and fatigue and word-losing memory lapses and rashes which comprise the sum total of my symptoms, the choice seems obvious. I'd rather be an achey, tired, thesaurus-dependent sighted person.

The next gallon of blood I give up will be devoted to tests for kidney involvement, which I suppose might tip the balance toward YES if positive. But until then, I'm at NO.

All advice gratefully accepted, if not necessarily followed. :-)
================================
Often she hid at the sight of wild beasts,
forgetting what she was; and, though
herself a bear, shuddered at sight of other bears.
   -- Ovid, Metamorphoses


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 5/25/2008 11:19 AM (GMT -7)   
The vision problems Plaquenil can cause are extremely rare, can be reversed if you catch it fast enough, and take many years to develop. Easiest way to deal with it is an eye exam every 6 months where they dilate your eyes and one a year where they do a visual fields exam. So long as you get checked they can catch any problems early on and have you stop the plaquenil at a point where it is entirely reversable. As I said the problems are rare and the warnings are left over from when they used much much higher dosages. Every eye doctor I have seen has said they never see the problems warned about and I go to eye doctors who deal with lupus patients regularly just to be safe.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 5/25/2008 11:50 AM (GMT -7)   
Redrose is spot on with this one....extremely rare, do visual field exam once a year....been on plaquenil 8 years with no problems.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


Maenad
Regular Member


Date Joined Mar 2008
Total Posts : 20
   Posted 5/25/2008 12:01 PM (GMT -7)   
What if my visual field is already significantly compromised? At what point does this test indicate to stop the plaquenil, or can it under the circumstances? (I know, I know, I will ask the doc... but I'd like to hear your experiences/ opinions.)
================================
Often she hid at the sight of wild beasts,
forgetting what she was; and, though
herself a bear, shuddered at sight of other bears.
   -- Ovid, Metamorphoses


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 5/25/2008 12:48 PM (GMT -7)   
When they dilate your eyes they can see if the plaquenil is building up on the retna (sp) which is what causes the problem. If your fields are already bad then talk with eye specialist MD before you go on plaquenil to see what if anything this would mean for you.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007,
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin, Imuran, Procardia, Prilosec


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 5/26/2008 3:06 PM (GMT -7)   
It's a good idea to have a base line test by an ophthalmologist especially if there are existing sight problems. Perhaps Plaquenil will already be contraindicated in your case. If so, there is an alternative antimalarial called Quinacrine which does not affect the eyes. It has to be obtained from a compounding pharmacy.

If you have the regular eye tests while taking Plaquenil any damage should be detected before the sight has actually been damaged and is reversible. There are a very few people who have had eye damage and millions have taken this very beneficial drug without any problems and quite a few like myself for many many years.
The risk is somewhat greater in overweight people and in more than the regular recommended maximum dose which is about 3mgs per lb of ideal body weight.
If you have kidney involvement you will need more than Plaquenil. Urine tests are essential to show abnormally high protein loss. Taking Plaquenil might help stop disease progressing and needing more toxic medicines.

BB

jessieb578
New Member


Date Joined May 2008
Total Posts : 11
   Posted 5/30/2008 12:04 PM (GMT -7)   
Hi! I have the same concerns as well because my daughter who is 6 years old is on it. Not to mention the fact that getting her to do the eye tests is like pulling teeth.  I was so worried last time we went to the rheumatologist that they were going to increase her dosage. She's already on 200 mg. 5x a day.
 
I was told by my rheumatologist not to research plaquenil on the internet because it will show a lot of negative info about eye sight, etc. He said that in 30 years he's never seen anyone with eye problems. I trust him greatly with my daughter and believe what he says.
 

Loni123
Regular Member


Date Joined Jan 2008
Total Posts : 60
   Posted 5/30/2008 1:46 PM (GMT -7)   
I work in the eye field and alot of it has been with children, even though she is six they can still do very good exams on her, just dont take her to an optometrist make sure it is a pediatric ophthamologist they are much better at dealing with young ones! They may attempt a visual fields depending on her attention span, they will also need to check her color plates, even if she cannot say what the #'s are she can atleast try to trace them or that is how i do the exams.   I have asked the doc's that I work for if plaquenil has caused any eye problems that they know of and they have all at this point said not that they have seen.   MAENAD: do you have problems with your vision already? Glaucoma?

AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 5/30/2008 8:57 PM (GMT -7)   
Hi Jessie . . . I hope your post is a typo . . . is it 200 mg 5x/week???? If your post was right, i would get a second opinion on that dosage.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Maenad
Regular Member


Date Joined Mar 2008
Total Posts : 20
   Posted 5/31/2008 6:37 AM (GMT -7)   
Yes, the reason I don't want to try the plaquenil is because I already have eye problems. I have scarring and a cyst in the right retina, so that eye is pretty much toast already. I have floaters and retina problems in the left eye too, but I still see well enough in that eye to work (I'm a writer, editor, and publication manager who is dependent on my eyesight) and to drive during the daytime.
 
From what I've read, these are exactly the kinds of eye problems that can be aggravated by plaquenil. I understand it's rare, but I'd be a perfect candidate for becoming one of those rare cases.
 
My next bajillion gallons of blood and some urine will be going into tests for kidney involvement. If there's trouble in that region, I'll think about risking my ability to work and drive.
 
My doc says the same thing others do, apparently: That it's rare and there's really not much to worry about. What I think is that he has a only a few specialized hammers in his tool box, which makes me look exactly like a nail. I think I'm a potential and future nail, but at this point in time: not a nail.
 
================================
Often she hid at the sight of wild beasts,
forgetting what she was; and, though
herself a bear, shuddered at sight of other bears.
   -- Ovid, Metamorphoses


BumbleBee1
Regular Member


Date Joined Oct 2005
Total Posts : 130
   Posted 5/31/2008 2:18 PM (GMT -7)   
Don't forget the Quinacrine option !
BB

haditall
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/13/2009 12:41 PM (GMT -7)   
I hope I'm not too late with my advise. I just came across your posting today. I have been taking plaquenil for several years for Rheumatoid Arthritis (200 mg 2xday). Yesterday my eye doctor immediately took me off of it because I have developed eye problems. I have been getting my check-up every 6 months since beginning my meds and was fine until I recently lost 45 lb. This brought my weight down to still well above the so-called safe area of above 135 lbs. for my dosage so I, in theory, should not have any problems. But my visual field shows differently, and also the blurry patch in the middle of the page (where my field of vision is messed up). I also flunked my color test (shouldn't have - I'm female and color-blindness is usually a male thing) for the first time. I developed new floaters a few months ago also. The doctor and I are hopeful that it's not too late to reverse my vision problems. Don't let any doctor tell you that this med is perfectly safe just because he/she's never had to take a patient off of it. They've just been lucky. If you already have eye problems, try something else! It's not worth loosing your sight.
Granted I'm the zebra in a herd of horses, but don't let them tell you it's never going to happen. I also have neuropathy, diabetes II and Sjogrens in spite of being ANA negative for both it and RA.

I also agree the dosage of 200 5xday must be a typo or the dr is crazy. So's the one who told her not to research the internet. I'd think about finding another doctor.

omega
Veteran Member


Date Joined Jan 2007
Total Posts : 607
   Posted 3/13/2009 1:25 PM (GMT -7)   
I am also one of the rare case who developed Plaquneil toxicity in the right eye. The Rhumty said I am the only one who he sees in 20 years wouldhave this problem. I had to stop this medication few years ago. The Rhumty said that it might be because the dosage I was given was way too high for my weight and height (that time I had a serious flare). Besides this, I had been on and off taken Plaquneil for quite a while and had not have any problem before then. As it was still in the early sign, it did not affect my vision very much. Yet obviously one eye looks things are slightly darker than the other.
As for the appropriate dosage, it needs to be in accordance with your height and weights. Before taking Planqueil, you should also have an eye examination to see the base line first. You can ask your ophathamolgist or your doc if you have concerned about your eye problem before taking Plaquniel.
DX SLE 1988; APS (Antiphospholipid Syndrome) Pred 10mg, Verapmil 40 mg bd (for migraine headaches), Cellcept 1000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Iron; Simvastin; Oxycontine 10mg; pregablin 150mg


haditall
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/13/2009 1:50 PM (GMT -7)   
My eye doctor always measured my dosage against my weight every time I went in for a checkup. I don't believe this is as rare as they would have you think.

MJLD
Veteran Member


Date Joined Jul 2007
Total Posts : 1048
   Posted 3/14/2009 10:03 AM (GMT -7)   
Maenad- plaquenil is not a first line treatment for renal involvement; which i pray you don't have...keep us posted.

Jessie- I agree with Rosie, i'm not a doc, but that sounds like alot of plaquenil for anyone much less a child!

haditall
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/16/2009 7:19 AM (GMT -7)   
I am going back to the op doc on the 6th of April for a fluorescein angio & a repeat visual screen to see how much damage plaquenil had done to my right eye. I'll keep you posted. She's hoping it will reverse itself but it takes a while for plaquenil to clear the body after stopping it. I don't know what the RA doc will do next. The 2 docs have talked. The op doc has the last word. As long as I weighed 200 it was okay but at 160 it became toxic to my system.

canuckgirl
Regular Member


Date Joined Jan 2007
Total Posts : 146
   Posted 3/17/2009 12:29 PM (GMT -7)   
I highly disagree with the comment that toxicity takes " many years to develop" I had severe retinal toxicity after being on Plaq for 13 months I had build up in my retina and eye floaters and flickering vision. After being off Plaq for 5 months the symptoms all reverted. I am one of three people in my 67 person lupus support group who was taken off plaq in the first three years for eye problems.  So I don't think it should be dismissed by assuming that it takes years to develop. In fact I didn't get a 6 month eye test based on everyone's comments I read about how rare it is for there to be a problem.
MCTD had a high positive ANA of 1:2560 with high positive anti -rnp using antibiotic therapy and now pretty much better. With now a negative ANA and all labs no more RNP antibody or Pain

Post Edited (canuckgirl) : 3/17/2009 1:35:57 PM (GMT-6)


Fiesta
New Member


Date Joined Mar 2009
Total Posts : 14
   Posted 3/17/2009 1:18 PM (GMT -7)   
I have significant vision damage in one eye as well and I have already told my doctors that if medication becomes necessary, steroids and antimalarials (Plaquenil at least) are out of the question. I cannot live with further risk to my vision.....

Fortunately, my primary is very supportive and totally agrees.

haditall
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/17/2009 3:04 PM (GMT -7)   
I spent more than a year on steroids and don't want to go back to that. I have many other problems that add to the mix - keratoconus, multiplex and motor neuropathy, Sjogren's, small vessel disease, prior tiny stroke, high risk for blood clots, giant cell granuloma inside rib near spine that ate away the rib, GCG in one lung plus scar tissue from rib surgery, lower back surgery, RA and OA, very high stroke risk, diabetes and I take 10 different meds. I see a RA doc, neurologist, endocrinologist, Op doc, neurosurgeon, pulmonary specialist, urologist, and shrink on a regular basis. There's not a cell on my body that has not been examined.

I've avoided even thinking about Lasik because I didn't want to damage my sight, and now this! I just hope the Plavix damage can be undone. I was diagnosed with RA back in the late 90's and she said I probably had had it for several years, but with a negative blood test the doctors just didn't recognize it. I'm one of those small percentages again (I love being a Zebra - my doctors now know to look for it & not horses) that has a negative blood RA factor but positive other factors for RA. The same thing with Sjogrens.

jhmom
Veteran Member


Date Joined Oct 2004
Total Posts : 2244
   Posted 3/17/2009 3:41 PM (GMT -7)   
I've been on plaq since 2004 and haven't had any problems with my vision. My eye doc suggests only one visual field test a year and a regular eye exam on the other visit.

I too heard it was rare to have the med affect my eyes but I ALWAYS keep my appts to have my eyes checked and my eye doctor tells me if I ever notice a difference in my vision to call/come in right away.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/17/2009 6:05 PM (GMT -7)   
Hi,

I've been on Plaq since June 2001 and I've had no problems from it, touch wood. I get my eyes checked on a regular basis and I have to admit the last eye doctor I saw mentioned about me going off the plaq. He was concerned that I've been on the medication to long. We did a special field vision test especially for plaq and I passed with flying colors. So for the time being I'll be allowed to stay on the medication.

I've also been on prednisone since June 2001 and at times very high doses. I have developed cataracts in both of my eyes. According to my Ophthalmologist they'll never go away unless I surgically have them removed. If I go off the prednisone they will stop growing but they'll never go away. I went and had a second opinion and the second doctor confirmed that to me. Since I'm unable to get off the prednisone my cataracts will continue to grow and I will eventually need to have them removed. Other than that I've managed to keep my eyes well.

I'm sorry that you've got eye issues already and I would suggest you seriously discuss this with your Ophthalmologist and hopefully they can help you make a well informed decision. I wish you the best and I hope that you begin to feel better soon.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


haditall
New Member


Date Joined Mar 2009
Total Posts : 6
   Posted 3/18/2009 6:52 AM (GMT -7)   
If it wasn't for 6 month visual fields we wouldn't have caught this soon enough. My visual field 6 months ago showed very minor changes and this one last week showed more drastic changes. You might rethink how often you want to do visual fields and do a corneal topographography (sp?) at least once every couple of years if normal, more often if not. Thank goodness I have an op doc that believes in keeping on top of checks for plaquenil patients.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 3/21/2009 7:44 AM (GMT -7)   

Hi!

I am a nurse and I have been on Plaquenil for 4 yrs. My eye drs. are specialists I worked with and truly, the minimal risk can be warded off with frequent, like q6 month visual field tests. If you then stop the Plaquenil, the problems resolves as I understand it. In fact, my neuro said if I was at all worried, he would give me a "grid", a chart of square lines like graph paper and I'm so sorry, I forget the name of it, to look at whenever I wanted to, and the earliest warning sign, is when you look at a straight line and it looks a little wavy. And they would see me right away. It is a risk vs. benefit thing, and I opted for the plaquenil.

hugs,

sue


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/21/2009 9:10 AM (GMT -7)   
The grid is available online, the link can be found in the second topic "Lupus Resources".

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

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