plaquenil

[lori_88]

Hi, sorry to bother everyone with questions, but I've been on plaquenil for almost 2 months now, and just the other day I started seeing halos of light, and then experience missing/blanked out parts of my vision, it didnt last for very long, only a few minutes and then things went back to normal. This has NEVER happened to me before, and Im pretty sure that it was caused by the plaquenil (im not on any other meds right now) I went to my optometrist and she said it was too early to have problems and that I should contine to take it, I asked her to refer me to an opthamologist, but I dont have an apponintment until august 29th, Im going to call my rhumey tomarrow, to see what ahe says, Im just afraid she'll tell me to go back on it, my vision is not something I want to be fooling around with. Has anyone experienced this? should I be concerned?
any help would be hugely appreciated style_emoticons/<#EMO_DIR#>/Thanx.gif

[Lily]

Hi lori,

Best to check but it does seem very early to be having a problem and I dont think those particular symptoms indicate a problem with Plaquenil retinal toxicity anyway. Here's a link to an Amsler grid online, http://images.google.com.au/imgres?imgurl=...=image&cd=3 (http://images.google.com.au/imgres?imgurl=http://www.inova.org/inovapublic.srt/armd/images/amsler_grid.gif&imgrefurl=http://www.inova.org/inovapublic.srt/armd/amsler_grid.jsp&h=248&w=241&sz=8&tbnid=-ZikvHdNgrWr3M:&tbnh=106&tbnw=103&prev=/images%3Fq%3Damsler%2Bgrid&start=3&sa=X&oi=images&ct=image&cd=3) if the lines appear wavy not straight then it will be worth seeing an Opthamologist re 'possible' Plaquenil toxicity.

Otherwise have you considered the possibility of ocular migraines without the headache, I get those sometimes and they can cause visual disturbances similar to what you mentioned. But then so can other things, I'd ring the Rheumy and then I'd go see your GP about the particular thing if the Rheumy draws a blank and it is occuring often. If it's only occurred that once then I wouldnt panic just yet.

Be sure before you blame the Plaquenil.............you may regret going off it and end up with far more problems in the long run.

love
Lily

[alobreto]

I agree with Lily that Plaquenil toxicity after only 2 months isn't in the realm of likely causes of your visual disturbances. There are many other possibilities that are much more probable, including an episode of increased blood pressure that resolved after a short while. You don't say if you were having any other unusual goings-on that were happening at the same time as the vision problems.

I also agree with you that when your eyesight is affected by ANYTHING, it can be very, very scary, unnerving, and worrisome.

I'm guessing that the ophthalmologist was informed of the reason for your need to be seen. If that is the case, then I'd be inclined to believe that s/he doesn't see an emergency situation with the symptoms you describe or your appointment would be made with less delay.

If you'd like to be seen sooner, you might call the office and ask if a list is kept of cancellations so that you could be called in earlier if someone cancels their scheduled appointment before yours comes up.

I wish you well!
Angela style_emoticons/<#EMO_DIR#>/hugbetter.gif

[rwb200]

http://www.mayoclinic.com/health/drug-information/DR202288

Attached is a link to Mayo Clinic and the drug information.
From what it says it is possible that the plaquinil is the cause because this is a known side effect of the drug.
From what it says while this is more common after long term use it can also occur in some people after much shorter periods.

While this drug has been a life saver for many people and has helped alot some people have problems with it after short periods of time.
My wife was on it for less then one week when she had to go off because of severe reactions to it.

If you go to a good eye doctor you should be able to tell them what medical conditions you ahve and what medications you use and they should ether know or have access to information on what to look at and or for to see that everything is ok.
When you called the doctors for an apointment did you tell them that you were having a problem or did you just ask for an apointment or a check up ?
I ask because it can make a big difeence with some doctors on just how long it takes to get in to see them.
With our Eye Doctor if you call for a checkup or a normal appointment it is likely to take about three weeks to get in.
If you call and say you are having problems they normally get you in within an hour.
Very big diference and for someone who is having probelms can make a big diference.

[Lily]

Hi,

The Mayo article is around 7 years old though. Pinned at the top of this forum is more recent information regarding Plaquenil. Other problems usually become more obvious early on like rashes, stomach problems (which usually subside after some weeks for most people) but the eye problems take a little longer as a general rule.

Anyway a look at the Amsler grid and an earlier visit to an Opthamologist should help sort this out style_emoticons/<#EMO_DIR#>/smile.gif

love
Lily

[Clare.T]

style_emoticons/<#EMO_DIR#>/sad.gif

Tough call, as things stand now. I hope your rheumy can advise you.
I know that some possible side effects like eye muscles being temporarily affected causing double vision are not serious- it wears off - but I too would be very worried about this sort of thing going on and naturally you want authoritative reassurance before you continue taking it.

It's all very well for the optometrist but does she have extensive experience of possible effects and if this isn't cause by the Plaquenil, what is it.

Several sites mention that side effects can sometimes occur with a few months of starting it although it usually takes several years if ever. So I wouldn't be happy to be told it is "impossible" on the "never say never" principle.

I will mention the alternative Mepacrine that doesn't affect the eyes, but I have never heard of anybody in Canada actually using it although I know it is theoretically available there from a compounding pharmacy.

I hope you can get good news soon

style_emoticons/<#EMO_DIR#>/hugbetter.gif

Clare

[lori_88]

thanks for the advise everyone, it is much appreciated style_emoticons/<#EMO_DIR#>/smile.gif . I actually have one of those amsler grids pinned on my wall, and I look at it periodically, everything seems fine now... but if I were to look at it when I was experiencing the light halos and blanked out/missing parts, I'm sure parts of the grid would have been missing. I tried looking at a book when I was experiencing the "vision problems" and I couldnt read it because there were blank spots where I couldnt see anything. The funny thing was I was fine for most of the day before it happened, I was actually just on the computer, and then I got up walked around the house.. came back to the computer and thats when things got bad. My apponintment for the opthamologist at the end of August is the earlyiest they can get me in unfortunatly. Around here the waiting lists are insane! .. I remember having to wait 6 months to get in to see a dermatologist, and then 8 months for my rhumetologist. Im actually going to to see my ruemy July 6th now, which is good after my apponintment had originally been moved to Sept 25, so Im going to ask her about this when I get in there, hopefully she'll be able to help me.
thanks again everyone style_emoticons/<#EMO_DIR#>/Thanx.gif

[Clare.T]

I'm glad you don't have to wait so long to see your rheumy.

Check out the thread about ocular migraines especially mdoats post linking to a website that has pictures of their effect on the vision

http://www.thelupussite.com/forum/index.ph...cular+migraines (http://www.thelupussite.com/forum/index.php?showtopic=27423&hl=ocular+migraines)

I went through a phase of having these many years ago. I am sure they were triggered by sudden exposure to bright light - throwing open the shutters in a very dark bedroom to look out on sunlight snow, and once going from a dull twlight into a very brightly lit supermarket. I get a funny feeling, sort of slightly sick and vaguely headachy but nothing like a migraine and I very rarely have headaches in the normal course of life.

Good Luck

Clare

[CaseyMV]

Hi Lori,
I have been on plaquenil for about 6 months now, and my vision has completely gone down hill. When you go to get your eyes checked, ask for a "plaquenil test". It helped me get a Rx that really helps. One down fall to the Rx is that whenever ur dose changes, so does ur vision...

[Clare.T]

Hi again Lori

Casey makes a good point - did the optometrist actually do the "Plaquenil tests" or did she just say it was too early.

There are a number of tests that should be done. We need to make a note of what they are and ask what is being done

From the ACR position statement pinned above

<div class='quotetop'>QUOTE</div><div class='quotemain'>


All individuals starting these drugs should have a complete baseline ophthalmologic examination within the first year of treatment. This should include examination of the retina through a dilated pupil and testing of central visual field sensitivity by either a self-testing grid chart (Amsler grid) or an automated threshold central visual field testing (Humphrey 10-2 testing). If the patient is in the low-risk category and these examination

[/b][/quote]

Incidentally, my rheumatologist and an ophthalmologist who spoke at a lupus meeting said the Amsler grid can't be relied on and doesn't replace the Humphrey/ macular visual field test , because when it shows up problems the damage is already occuring whereas the formal tests should show it up before the sight is affected.

All the same it clearly has its uses when it isn't easy to get a proper check up done.

This is the best most thorough article I know of on Plaquenil eye toxicity

http://www.lupus.org/education/topics/plaquenil.html

My ophthalmo in NYC always did a colour vision test. He had a little book with shapes in coloured spots against a coloured spot background - you had to be able to distinguish the shapes, one eye at a time, from the background. The spots were pale pastel colours, green, blue grey and pinky if I remember correctly. He said the book was no longer available.

What exactly is your red spot test Lily?

Clare

Hello Casey and Welcome

You wrote
<div class='quotetop'>QUOTE</div><div class='quotemain'>

It helped me get a Rx that really helps. One down fall to the Rx is that whenever ur dose changes, so does ur vision...
[/b][/quote]

Sorry, but I'm not sure what you mean. Does Rx mean Plaquenil ?

style_emoticons/<#EMO_DIR#>/smile.gif

Cheers
Clare

[Lily]

Hi Clare,

Yes nothing can replace the visual field test and other assessment done by an Opthamologist and yes they should be done before starting Plaquenil as well as periodically during the course of treatment.

My optho also tests the colour shape distinguishing with that same book yours did Clare. So it must be a recognised test also.

It not a red spot thing, I had to come home after first exam and find a bright red object after I got the all clear and if the shade of red differs over time then I am to ring him and get an earlier appointment. I have no idea what significance it holds, but that along with the amsler grid he said it should tip me off to any changes between scheduled visits. I must ask him next time I go what the significance of the red object colour test is.

love
Lily

[rwb200]

When prolonged therapy with any antimalarial compound is contemplated, initial (base line) and periodic (every three months) ophthalmologic examinations (including visual acuity, expert slit-lamp, funduscopic, and visual field tests) should be performed.


If there is any indication of abnormality in the visual acuity, visual field, or retinal macular areas (such as pigmentary changes, loss of foveal reflex), or any visual symptoms (such as light flashes and streaks) which are not fully explainable by difficulties of accommodation or corneal opacities, the drug should be discontinued immediately and the patient closely observed for possible progression. Retinal changes (and visual disturbances) may progress even after cessation of therapy.





The above is from http://www.sanofi-synthelabous.com/ the manufacture of Plaquinil. They recommend that a person who is concidered for reatment should be evaluated every three months for eye problems.

I looked up the ACR information and there does seem to be some contradiction to what is said at both Mayo Clinic and the Manufacture. Seems Odd - Not sure what to think about that one.

[Lily]

Clare I found this about the red object on the Sanofi site that RWB posted.

<div class='quotetop'>QUOTE</div><div class='quotemain'>The methods recommended for early diagnosis of "chloroquine retinopathy" consist of (1) funduscopic examination of the macula for fine pigmentary disturbances or loss of the foveal reflex and (2) examination of the central visual field with a small red test object for pericentral or paracentral scotoma or determination of retinal thresholds to red. Any unexplained visual symptoms, such as light flashes or streaks should also be regarded with suspicion as possible manifestations of retinopathy.
[/b][/quote]

love
Lily

[K-MARIE]

HI
I was on plaquenil for about 7 months , then i began having blank spots in my vision lasting less than a hour each time , and also more frequently tiny flashes of lights that i could see move about then fade off, they happened more and more each day although not continous, I went to my opthologist twice and he could not see any eye damage, upon then seeing my dermatologist who had prescribed the plaquenil, she told me to stop taking it , but seemed a bit aggrivated and sent me to a neurologist. by the time my appoint came due apporx 3 weeks later all these vision symptoms had gome completely away. the neurologist ordered a mri , this was fine and on my consulting visit he blamed the plaquenil as the problem. Later I read somewhere that these were side effects of plaquenil. I wish I could of kept on the plaquenil since it greatly helped, but the visual symptoms were frightening and the neurologist was insistant that he would not want me on it again, he felt that these symptoms were signifying some reaction that shouldnt be ignored. I have to admit the blind spot was very scary to me, i thought of endless fearfull things . I have not had it since going off the plaquenil.