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Plaquinil and vision changes

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Posted 6/23/2007 7:33 PM (GMT -5)
Something weird just happened to me. My eyes saw a arch with scalloped edges when I was reading my book. I couldn't line up the print. Then it got kind of dark in my peripheral vision. I closed my eyes for a few minutes, 30 or so and it went away. The whole episode lasted for about 45 minutes. I am fine now. Could Plaquinil be affecting my vision after using it for slightly less then a month? Could it be the Prednisone?

Thanks,

nancy

Posted 6/23/2007 8:09 PM (GMT -5)
Hey Nancy.. how long have you been on the Plaquenil? And at what dosage? Have you had any other issues with your vision since you started the plaquenil?

Do you have an on-call rheumy for the weekend?

Hang in there, and please keep us posted..

Duck
Posted 6/24/2007 3:42 PM (GMT -5)
Hi Nancy..it is difficult to say if it is your plaquenil or not. For me I have had occular migraines since 1999, and I take Topamax for them. They are similar to what you described and can last anywhere from five min, to an hour. Although, now I get the squiggles starting around bedtime and if I have to get up before it is light outside, I am still having them and they finally do diminish once there is natural light in the room. Mention it to your doctor, and see what he says, and also keep track if you have any more of these. Mine started long before I ever had RA type thing happening to me. So it is not a plaquenil issue for me.
Posted 6/24/2007 8:06 PM (GMT -5)
My rheumy said it takes 30 to 40 yrs of plaquenil before your eyes are affected.  Even if that is an exaggeration, I would think 3 months might be considered too quick to cause problems.

 

Posted 6/25/2007 2:05 PM (GMT -5)

I go to an opthamologist for plaquenil toxicity monitoring.  He's told me it takes years (abeit, probably not 30-40 years:)) for plaquenil to seriously affect your eyes.  I've been on it for a year now, and have had no problems other than GI upset when I first started taking it.  Of course, you can never be too sure, and if you're not comfortable then by all means ask a doctor about it.

El

Posted 6/25/2007 3:58 PM (GMT -5)
Thanks for your replies,

I didn't think the Plaquinil could affect my vision so soon. I do wish it would start work on my arthritis soon. I take 400mg of it daily. I have had some digestive upset but not that bad. I am down to 7.5 mg of Prednisone and one pain pill at night to help me be confortable to sleep. I would love to quit the Pred. I still am having inflammation and probably should be taking more Pred. because I know it works!, but I don't want to take anymore than I have to. I am trying to get a second opinion but my referrel got lost at the Hospital. I hope to get a DX besides " some kind of imflammatory arthritis that is inflamming your joints". Most of my joints light up on the bone scan I had I had 6 wks. ago and that is his DX. I also have 2 inflammatory markers in my blood. I do not have the markers for RA or Lupus.  Anyway,thanks for your imput.

Nancy

Posted 6/25/2007 5:16 PM (GMT -5)
Nancy,

Like Elcamino, I recently had my tests done since I take plaquenil and although I didn't pass the tests and my eyes showed signs of damage, we are not sure if it is the plaq, or if its the way my eyes are since I didn't have a baseline exam when I started the plaquenil. I have been taking it for about 8 months off and on. HTH
Posted 6/26/2007 10:35 PM (GMT -5)
I was just taken off of Plaquenil.not for my eye site but had to be put on a drug for another health problem and the two meds do not mix so we had to weigh and see wich drug I needed worse.I was on it how ever for a year and a half the first eye( I to see a Opthamologist)exame I had done showed no change in vision.But the next one I had done my eye's were worse and had to have stronger lenes.
Posted 6/27/2007 8:16 AM (GMT -5)
Hey Nancy... I would still talk to your rheumy about it and get an eye exam.. Did you have an exam done before you got on the plaquenil for a baseline? Good luck, and let us know how you are doing
Posted 6/27/2007 12:48 PM (GMT -5)

I have been on Plaquenil for over 20 years and have not had any vision problems related to the drug. I do go to the opthamologist 2 to 3 times a year for visual fields; he has told me the plaquenil can cause damage to the retina. If anyone has definately been diagnosed with plaquenil related vision problems, I would like to know what symptoms it caused! It would be helpful to know what to "look" out for!

Frayda

Posted 6/27/2007 3:12 PM (GMT -5)

Well it happened again yesterday. We went on a motorcycle ride with my husband to a friends house. While sitting at the table I had the same arch with scallops in my vision. It only last for about 15 mins. this time. I see my Rheumy on Tuesday. He will think I am a loon but I will ask him to look at my eyes. I am due for a vision exam so I will have them checked soon. When I talk to my Rheumy about side effect that I have he brushes them off so he will probably do the same. I am trying to get an appt. with another Rheumy for a second opinion about my condition. The referral got lost so I had to start over again. OH BOY!

I am having a very stiff day. My daughter and I put up some new drapery yesterday and It turned out to be more diff. than expected. I didn't think we were going to have to build the curtain rod, then use powertools to install the hangers. My wrists aren't functioning very well today. I hate this disease! Sometimes the littliest things can cause some much aggravation.

Thanks again!

Nancy

Posted 6/27/2007 3:46 PM (GMT -5)
ok nan i missed this post earlier, sry.... regardless of planquil or not planquil something is going on in ur eye that is out of the norm and u need to see an opthamologist for it. what u r discribing could be tears and the darkness blood and the drap the actual tear line. have u done any heavy lifting lately? lol arthritic doing heavy lifting... ok i had to ask ...... u are not discribing floaters but an actual veil that is occuring and i would like u to seek professional advice. does ur health care provider cover an opthamologist if ur pcp refers u? that is where i would start. hopefully it is nothing but i would definetly check it out asap. fyi it is my job to works with peps who have vision impairments. keep me updated on ur appointment yalinda
Posted 6/27/2007 5:01 PM (GMT -5)
Hi Nan, what your describing really sounds like visual auras...occular in nature..I went through many tests and finally ended up at a neurologist for treatment and was diagnosed for mine. It doesn't sound RA related..occular migraines are migraines without the pain.
Posted 7/3/2007 8:57 AM (GMT -5)

I have been on a adventure with my hubby so I haven't got back to you'll for a while. I go to my Rheumy this morning. I feel really inflammed and crappy this morning since I tossed and turned more of the night due to pain. I am going to mention my eyes but I also do not believe it is related. I finally got an appt. for a second opinion next week at a local university hospital. I think I have a form of AS. I feel so badly this morning that I just want to cry. My hubby is getting tired of me feeling so badly. I can tell he is very disappointed with me. I know he cares but He makes me feel like I am just another hassle in his already frustrating, stressful life. He has his own business and has had some challenges lately. We are to go on a 700+ mile motorcycle journey next week. We have been planning this for months. I don't know if it is possible considering how I feel today or lately in general. Sorry for the pity party. Needed to vent.

Nancy

Posted 7/3/2007 11:23 AM (GMT -5)
Hi Nan...

I'm so sorry you are having a bad flare...and feeling like you are a burden to your hubby only makes you feel more miserable...Gentle hugs to you!!! You may or may not be up to going on your trip, and if you can't it is NOT your fault, although I know that both of you are looking forward to this trip. I hope that your husband will be able to get on board and support you when you are having a flare. Please remember we are always here, so vent away!!

I am not sure what AS is? but I hope you find out soon. I have mentioned before that I get occulars and they can be very disturbing if you do not know what they are.
Posted 7/3/2007 6:22 PM (GMT -5)
Dear Nan, I just read your note about the aniexty you are feeling about going on your trip.  I to had aniexty about going on a 2000 mile trip with my hubby.  We were picking up his new corvette :-) he got for his 50th birthday, at the corvette museum in kentucky.  We made plans all year, but as it got closer I began hurting more and more.  I told him he should take a guy friend and go without me.  He totally refused and said everything would be okay.  I told my rheumy Dr. about the pain and he suggested I take the predisone pack for five days. Starting 2 days before I was to leave and 3 days on the trip.  Wow, the swelling went down and my mood was great.  He also gave me ambien so I would sleep in the hotels.  I cannot tell you what a wonderful trip I had.  I can't believe I almost missed it.  Just a note:  if you do get ambien take it about 10:30 or 11:00 at night when you know you will not be disturbed by the telephone and never drink alcohol while taking it.  Hope you have a good trip.  Hunnybunny yeah
Posted 7/3/2007 8:12 PM (GMT -5)

Thanks for the encouragment. I went to the Rheumy today. He looked at my eyes and didn't see anything. He didn't seem at all concerned. If it happens again I will go see my PCP.

My Rhuemy says to up my Pred for 1 week to 20 then wean down again to 10. I have been taking Plaquenil for 1 month and it isn't working so far. I know it can take several months to work. He still doesn't have a DX for me. He says "some kind of autoimmune disease is probably causing my joint inflammation. I don't always have red joints or swelling that he can see so I don't know if he believes me sometimes. I have visually responded to Pred. and he had witnessed redness and swelling when I weaned of it entirely. I did have inflammatory markers in my blood work and they went away with the Pred use. I have many bilateral inflammation in my bone scan also. He seemed most concerned that I gained 3 lbs. I need to lose some weight but I haven't felt much like excercising lately due to pain and fatigue. I have an appt. Tuesday for my second Opinion. I would like to figure out a way to quit the Pred. I would also like to have a DX. Thanks again for listerning.

Nancy

Posted 7/3/2007 8:43 PM (GMT -5)

Hi Nancy -

I'm sorry you are having so many problems. I hope the meds kick in quickly and you start feeling better.  I don't know what kind of hassle it is for you or how your insurance works, but I would call your PCP to get a referal to see an opthamologist right away - get this diagnosed and taken care of now so you know how to control or avoid this happening during your upcoming trip. When you have a problem, the extra visits should be covered. When you call, don't let them schedule you 3 months out - tell them you have a new and sudden problem that is inhibiting your ability to function when it occurs.

Plaquenil can be a bit subtle in it's working....you keep waiting for it to help, when in reality it is slowly improving your pain and suddenly 4-6 months later you realize "wow! I feel a lot better!"

Take care***

Posted 7/5/2007 11:48 AM (GMT -5)
Hi Nan, I agree with Camama about seeing a specialist, that is who sent me to a neurologist and after a MRI to rule out anything major, I was given something for my occulars.

As far as the plaquenil, it suddenly does start working and really helps with the fatigue or at least it did for me. It just took a couple of months, I know it seems endless when you are hurting!! For my doctor, he took such a long time to put me on anything but NSAIDS, it was months and months to get plaquenil for me, so you are ahead of the game!!

Hang in there!
Posted 7/6/2007 3:41 PM (GMT -5)
Hey Nancy.. how are you feeling? How's the flare? Is the pred helping any? I agree with everyone else.. you need to see an opthamologist and/or neurologist.. it may not be the plaquenil, but something isn't right.. good luck.. take care and let us know how you are doing
Posted 9/25/2007 3:51 PM (GMT -5)
Hello nanmac,

Am on plaquenil like you for RA/Osteo. Have been for approximately 3 years now. I visit an MD eye doctor every six months or my rheumy will not refill my plaquenil prescription. From what my eye doctor has told me, the prednisone I am on can be just as/if not more damaging to my eyes as the plaquenil.

You need to go to an eye doctor and let him test your peripheral vision, etc. now, so that he has a base line to go by as you continue on plaquenil/and or prednisone.

Have noticed that the plaquenil makes my eyes very sensitive to strong light, whether sunlight or brightly lit inside lighting.
Once a year my eye doc tests my peripheral vision as this is first sign of glaucoma, etc. or changes in vision caused from the plaquenil, prednisone, etc.

I do have a history of glaucoma in my family and other factors that make me at risk for glaucoma. Therefore, even if I am lucky enough to come off of the prednisone or plaquenil, I will remain getting these eye exams from my eye specialist until I die or can not get there anymore.

Be careful! Better to be safe than sorry. Check it out!

Hope this helps!

arthurmary
Posted 8/7/2008 3:40 PM (GMT -5)

Nancy and all others:

Please read this and take it very seriously...Do not discount Plaquinil as a possible cause for your eye vision disturbances. My mother was on Plaquinil and currently has Plaquinil toxicity, My mother was on Plaquinil for just a few years when she discovered some vision changes, she went to the eye doctor every 6 months to have her vision checked. Just because you vision is still good, that does not mean you are not being effected by the plaquinil. It is the field of vision that you need to be most concerned with. Do the Amsler grid(your eye Dr. should be able to provide one for you, and should be doing them every time you have a visit.)  if you notice even the slightest change, talk to you Eye Dr. right away. The sad part is that there are many Dr.s that are uneducated when it comes to recognizing toxicity in its early stages. As with what happened to my mother they kept telling her there was nothing wrong with her vision and it was not picked up on and the medication discontinues until her vision was completely compromised. There is nothing that can be done to restore her vision.

My best advise is that if you notice ANY changes in your vision PLEASE GO SEE THE EYE DR. IF THEY DO NOT DO ANYTHING GO SOMEWHERE ELSE, IF THEY DO NOTHING GO TO YOUR PRESCRIBING DR. AND GET IT DISCONTINUED. THEY SAY IT IS RARE TO HAVE PLAQUINIL TOXICITY…NOT RARE ENOUGH…PLAQUINIL WAS TAKEN OFF THE MARKET ONCE FOR HISTORY OF VISION PROBLEMS, THEY REFORMULATED IT AN GOT IT BACK ON THE MARKET. IT IS STILL AN ISSUE. TRUST ME WHEN I SAY THAT LIVING WITH NO VISION IS FAR WORSE THEN ANYTHING YOU COULD BE TAKING THE MEDICATION FOR.

ANNIE

 

*** Note from Mod:  I edited out your email address, just for your safety, so you don't get spammed.. Otherwise, I left your post as you had originally intended...***

Post Edited By Moderator (Ducky) : 8/8/2008 6:52:40 AM (GMT-6)

Posted 8/15/2008 7:18 AM (GMT -5)
I was on Plaquenil for about 5yrs and I had

visual fields every 6 mo.s to ck for "blind spots" caused by plaq. Sure enough I developed a blind spot in my left eye and had to discontinue the drug.  My rheum. said the drug can cause something like crystal deposits to form in your eye causing blind spots.  Also, my eyes became so sensitive to the sun while on the med. I hated to go out in the daytime. 

Posted 8/17/2008 11:15 AM (GMT -5)
Once you have the problems, they don't go away even if you discontinue using Plaquenil, right?

What type of issues are 'early signs'? I have been having focusing issues off and on - seem allergy related type issues, but they have started since I've been on Plaquenil.  Are you saying it affects your peripheral vision?

***

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