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Eye light sensitivity - burn out spots

Posted , 7 users are following.

nguyening
nguyening

I was recently diagnosed with Sjogren's. I have suffered from dry eyes for as long as i can remember, and I started taking Plaquenil to help with dry eyes and other sypmtoms.  It helps so far. I'm just worried becuase in the last month or two i have gotten really sensitive to light, and if I even look at a lamp for a second, it leaves a burn out in my vission as if I looked at the sun or something. I know that plaquenil can cause eye problems, but I wouldn'r think that it would cause that after only 6 months of use. Has anyone else experienced this in relation to their sjogren's?

I have another eye appointment on Tuesday, but just wondering if it may be Sjogrens related or if I am just having other isssues. 

Thanks!

1 like, 15 replies

15 Replies

  • Tumtum1963
    Tumtum1963 nguyening

    Posted

    I would say that this could well be the Plaquenil, after all any adverse side effects can show up within days of starting a new drug or at any point thereafter. They certainly have with me - I have been hospitalised within 3 weeks of taking one DMARD and had anaphylaxis after a longer period (18 months with Plaquenil) after two others.

    So I'm glad you are seeing the optician very soon. They will be able to tell straight away if it is the Plaquenil and advise accordingly. You really don't want to take it if it's having the rare but serious side effects on your eyes. This is apparently reversible if you stop straight away but it it's left too long then it can cause permanent damage. If it were me I'd probably stop until I had seen the eye doctor but that's your decision - I feel my sight isn't for messing with. Otherwise it could be the Sjogrens.

    • nguyening
      nguyening Tumtum1963

      Posted

      Thank you so much for the feedback.  I'm sorry that you have such terrible reactions to your meds.  It's so scary when you see what the side effects of these drugs can do.  

  • deidra40034
    deidra40034 nguyening

    Posted

    Hello Nguyening,

    ?Yes, I had a big issue with Plaquenil and my eyes!!  It does not happen to everyone, and most people can take it without any problem at all.  Plaquenil does work wonders for Sjogrens!  I however can not take it at all.  It caused eye damage within the first 3 months and I had to be taken off of it immediately.  And once it causes damage, it can not be reversed.  Your doctor should have told you when you first started the Plaquenil that you needed to be seen by an Opthamologist every 3 months while on it.  It is a good thing you have your eye appointment on Tuesday!  Please make sure you keep it!  You don't want to mess with your eyesite!!  LIke I said, the damage can not be reversed once you stop the Plaquenil, if that is indeed what your eye issue is the cause!!  It's a bummer, as some of the other meds don't work as well, although my RA doctor did put me on Imuran, which has helped with my dry eye and mouth.  I have other issues with the Sjogrens going inside to my organs, and have some pretty bad stuff going on with that, and have to take other meds for that.

    ?I wish you luck!!!  Keep us posted as to how your appointment goes!!

    • nguyening
      nguyening deidra40034

      Posted

      Hi Deidra,

      I'm so sorry to hear that have permanent damage due to the Plaquenil.  I hope it is not too harsh.  if you don't mind me asking, what were your first symptoms of damage?  Or did the opthamologist discover it?  I had an appointment with my optometrist after 3 months of taking the medicine, but I felt like she didn't know what she was really looking for. She had never heard of Plaquenil.  When I called my Rheumatologist about the photosensitvity and burn out spots, she nurse called back and basically told me that I would probably have to take Plaquenil for years before it could cause damage, and even then it would be very uncommon. Like you said, I just don't want to take a chance with my eyes.  I will definitely update after my appointment on Tuesday.  

      I may check in to Imuran too.  I wish you all the best with your health. I can imagine how stressful it must be.

      Thank you so much for the feedback!!  I really appreciate it!

    • Tumtum1963
      Tumtum1963 nguyening

      Posted

      It really worries me that your optometrist hasn't heard of Plaquenil - did you call it this or the generic title of Hydroxichloraquine I wonder? If Hydroxy then it's shocking as so many people take this med for Lupus and RA too - all eye specialists should know about this and acoustic Sjogrens - after all Henrik Sjogren was an ophthalmologist and it's the second most common rheumatic disease! I hope you will see a better eye doctor on Tuesday? Imuran is a very powerful drug that gave me a rare Pancreatitis (approx 1 in 300) so we are all very different avdctgis is why no one should be saying that your eye problem relates toSjogrens, Hydroxichloraquine or other.

      Best of luck though.

    • Tumtum1963
      Tumtum1963

      Posted

      Oops didn't mean accoustic SS!

    • nguyening
      nguyening Tumtum1963

      Posted

      I also thought it was kind of odd that my optometrist had not heard of Plaquenil.  I am seeing an opthomologist tomorrow, so hopefully he will have a better idea. 

      That's so scary about the Imuran. I hope you are getting relief.  

    • Tumtum1963
      Tumtum1963 nguyening

      Posted

      Thanks I'm presently five weeks into a trial of Mycophenolate Mofetil/ Cellcept and doing okay on it so far - although no real relief of neuro symptoms yet but it's early days still.

      Do please let us know what the opthamologist says. Hydroxichloraquine was very effective for my RA type symptoms and pain/ inflammation levels but did not help my small fibre neuropathy at all. It didn't affect my eyes at all but I discovered, through taking it for RA, that I actually had sicca/ dry eyes and this eventually led to a rediagnosis of primary Sjogrens last year. I've always had photosensituvity but put this down to being extremely fair skinned. I have photosensitive varifocals as well as normal non light changing ones. I haven't found it makes too much difference to my eye dryness but oddly the Mycophenolate seems to have helped already because I've gone from using drops hourly to only needing drops twice a day along with lacrilube every night. Couldn't manage without lacrilube though!

  • tj268
    tj268 nguyening

    Posted

    Hello nguyening, Ye that is one of my big problems is light sensitivity. Almost always do I keep my curtains dran or one partially open. It is one symptom for sure!
    • nguyening
      nguyening tj268

      Posted

      Hi tj, Sorry you have light sensitivity too, but I'm it's also kind of a relief to think that it may be SS and not the macular degenerative effects from the drugs.  Thanks!

  • estelle44124
    estelle44124 nguyening

    Posted

    Dry eyes is only one instance of eye problems associated with SS. Likelihood of things like eye infection (blepharitis, conjunctivitis), and also photosensitivity. I have had the latter for many, many years and my diagnosis of SS just explained why. Result is that I now wear spectacle lenses that are tinted and carry overglasses in the car and handbag. Sometimes have to put them on at meetings in halls with fluorescent lighting or bright chandeliers. I bought the first set of overglasses from the optician, but more, online. They have side pieces too, helping to keep draughts out of the eye, which would be drying. They are quite inexpensive, about £15 in UK. Hope this helps.

    ,

    • nguyening
      nguyening estelle44124

      Posted

      Thank you Estelle!  That actually helps a lot. I never thought of getting the kind of glasses that could block the draft with side pieces.  I will def look into that!  
    • estelle44124
      estelle44124 nguyening

      Posted

      apart from the ones I bought, they are available in sports supermarkets for people to wear when cycling, running etc. They just pop on over your existing glasses, if you wear spectacles. 
  • jennifer09136
    jennifer09136 nguyening

    Posted

    Yes, i have to support that photosensitivity is simply part of SS for many people and not necessarily linked to any medication use. I have it quite severely and am on no meds. You can only treat the symptom, learn strategies and have your sunnies at the ready at ALL times. This is especially so in shopping malls where the lighting is very bright + high AC which also hurts dry eyes.
  • carmen12016
    carmen12016 nguyening

    Posted

    I have been taking plaquenil for 12 years and i have not notice your simptoms you should ask the doctor because you probably have another issue.
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