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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 89
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Hello friends,
haven't been on for a while so need to do some catching up!
Last week i went for my annaul eye check as im on Hydroychloroquine (5years now) only to find out that the drug has affected my retina (pigmentation)! I have been referred to an eye hospital for further investigations. Have called my rheumatologist, as do i stop the drug immediately or do i need to wean off them. I do hope the damage can be reversed!
Has anyone else had this happen to them?
Thanks for reading
EmilyXXX.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,157 Location: Huddersfield
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Hi Emily,
I'm so sorry to hear this has happened to your eyes. Have they said if the damage is reversible at all?
I was only on Plaquenil for about 10 months and didn't have any problems with my eyes so can't really give you any advice.
I hope you hear back from your rheumatologist soon so that you know what to do about stopping it.
Good luck with the investigations at the eye hospital, let us know what they say.
Love Doreen xx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Emily,
sorry to hear of your eye problems, i am also on Hydroxy as part of my mix but i don't know if you have to be weaned off them or not to be honest.
i asked at my last appointment if i could stop it as i am also on Methotrexate and Humira which are working for me, but told it's best to stay on it.
do let us know what your Rheumatologist and the Eye Specialist says,
hope everything goes well for you.
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 12/7/2009 Posts: 262
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Hi Emily,
I'm sorry to read of your eye problems. Hope you get a quick referral to see the eye specialist and your rheumy can reassure you in the meantime.
I'm sorry I can't offer any advice, I think Hydroxy is the only Dmard I've not taken!
Thinking of you
Diane x
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
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Hi Emily Good to see you posting but sorry to hear about the problems you are experiencing. I have heard of this before and copy below an extract from Drugs.com with "official FDA information". You may need to stop the hydroxy but definitely hold fire until you hear back from rheumatology! I am not sure how reliable this information is but a google search may turn up more information. FDA (Food & Drugs Administration) info is normally good! Hope your ophthalmology appointment comes through quickly and you soon hear from rheumatology. Let us know how you get on. Good luck, Lyn x LUPUS ERYTHEMATOSUS AND RHEUMATOID ARTHRITIS
Indications
Plaquenil is useful in patients with the following disorders who have not responded satisfactorily to drugs with less potential for serious side effects: lupus erythematosus (chronic discoid and systemic) and acute or chronic rheumatoid arthritis.
Warnings
PHYSICIANS SHOULD COMPLETELY FAMILIARIZE THEMSELVES WITH THE COMPLETE CONTENTS OF THIS LEAFLET BEFORE PRESCRlBlNG Plaquenil.
Irreversible retinal damage has been observed in some patients who had received long-term or high-dosage 4-aminoquinoline therapy for discoid and systemic lupus erythematosus, or rheumatoid arthritis. Retinopathy has been reported to be dose-related.
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.
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Hello Emily, I can't offer any advice here but I think you deserve an immediate answer from the professionals about whether to stop the drug, wean off or stay on it until tests are done. If you don't have access to a rheumie nurse then perhaps you could phone the rheumie secretary and ask them to ask the rheumie for you. Failing that, maybe ask your GP. I don't think you should delay finding out what to do as eye sight is too precious. I am on hydroxy too so am interested to know what the outcome is for you. Good luck and I hope the pigmentation is reversible. From Naomi.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 838 Location: Nottinghamshire
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Hello Emily
So sorry to hear of your problems I hope that someones got back to you by now, if not keep pestering them until you get an answer, like Naomi said, your eyes are so precious.
I was offered this drug or MTX a few years ago, I decided on MTX, but I had done some research and asked about eye damage and was told it was very rare, in fact the nurse had never had any of her patients who had any problems with their eyes..
Hope you get some answers soon.
Take Care
Paula x
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 62
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Hi Emily
I also haven't been on for ages but it's nice to be in touch again. I've also had an eye problem but unfortunately I think it's more age related than the hydroxy. I started with flashes in the corner of my eye but then a blob has appeared which is a floater. I went to the doctor and then my optician and am presently awaiting an appointment at the eye clinic. My optician told me if I ever have noticeable changes in my vision not to go to her or the local hospital but go straight to Moorfields Hospital. I can't remember where you live but if it's in the London area take yourself off there.
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