Author Topic: Macular spots from plaquenil  (Read 1882 times)

bloodless

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Macular spots from plaquenil
« on: November 08, 2011, 01:31:49 PM »
My eye doc showed me spots caused by plaquenil. I have to do a test weekly. I look at a square in the middle of a grid. If the lines don't look perferct, I have to call her immediately. I see her again in 3 months. She said she may have to tell my rhuemy to lower the dosage or take me off all together. That's scary either way. I don't want the lupus and sjogrens out of control making really sick again, but I don't want to go blind either! Maybe I shouldn't try to stay on it. Maybe I should ask the rhuemy about other drugs and not risk my eye sight. Any thoughts?

Terrified in Texas
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

anita

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Re: Macular spots from plaquenil
« Reply #1 on: November 08, 2011, 02:49:03 PM »
Yours is the first on this board that I can think of having this type of side-effect from Plaquenil.  How long have you been on it, and what dose?

Please watch carefully as the doctor suggested and I hope it you have no further involvement.
49 yr old SjS, APS w/strokes, Severe Autonomic Neuropathy, PN, Nephrogenic DI, IgG def., Asthma, Gastroparesis.  Sero-negative w/+ lip biopsy.  Meds: IVIG, Arixtra, Aspirin, Plaquenil, Nitroglycerin, Cardizem, Imdur, Toprol XL, Domperidone, Nexium, Midodrine, Florinef, Symbicort, Percocet,

bloodless

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Re: Macular spots from plaquenil
« Reply #2 on: November 08, 2011, 04:28:04 PM »
400 mg a day for 4 or 5 years.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

Jellyb

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Re: Macular spots from plaquenil
« Reply #3 on: November 08, 2011, 06:01:10 PM »
Oh Bloodless, this is scary. If they lower your dose, will some of this damage reverse itself?

I hope you get this sorted out.
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Carebear

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Re: Macular spots from plaquenil
« Reply #4 on: November 08, 2011, 06:27:56 PM »
Hi bloodless,

That is scary, but it sounds like your ophthalmologist caught this early.  Maybe you can call your rheumotologist to see if he thinks a reduction in your dosage would be appropriate.  This may make you feel more comfortable.

Is your test called the Amsler Grid?   I have this test and was asked by my doc to take a look at it weekly too. 
Sjogren's syndrome, RA,  Raynaud's phenomenon, Celiac Disease, Hashimoto's Thyroiditis, Grave's Disease, Fibromyalgia, Seizures.

Plaquenil, Synthroid, Restasis, Methotrexate injections, Keppra.

jasonsmith

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Re: Macular spots from plaquenil
« Reply #5 on: November 11, 2011, 03:41:49 AM »
I'm no doctor. But from all I've read. I'd say it's best to stop the medication to help save your vision. As for example, you can stop Plaquenil, but still get damage from it going on 5 years later. So they say to stop Plaquenil as soon as it is discovered to be causing eye problems. As it stays in your system for a long time. Those Plaquenil articles make it seem like you have to be on super high dosages and taking it 5-10 years before anything can happen.

gurs

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Re: Macular spots from plaquenil
« Reply #6 on: November 11, 2011, 06:45:47 AM »
How do they know this is from the plaquenil?

I know having SS makes us more prone to eye issues? The older I get, the more eye problems I seem to have.
Now, might be getting glacoma..lovely!!!

You might want another opnion, as this medication is extremely important to you?

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, severe sinus & dental issues. selective immune def/low t-cells.
Daily steroids, plaquenil, diflucan, bio-estrogen creams,many supplements.

gold55

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Re: Macular spots from plaquenil
« Reply #7 on: November 11, 2011, 09:00:44 AM »
Are you sure it's not beginnings of macular degeneration which is common as we get older and NOT from the plaquenil???
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gurs

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Re: Macular spots from plaquenil
« Reply #8 on: November 11, 2011, 11:13:53 AM »
That's what im thinking too? i know we are no experts in this, but maybe seeking out another opinion (doctor).

Gursie
50 years old.Primary SS, Lupus, Raynauds, POTS, Hormone issues from Hyster-menopause, systemic candida,osteoporosis,Gastroparesis, chronic neuropathy, migraines, severe sinus & dental issues. selective immune def/low t-cells.
Daily steroids, plaquenil, diflucan, bio-estrogen creams,many supplements.

jasonsmith

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Re: Macular spots from plaquenil
« Reply #9 on: November 12, 2011, 12:02:35 AM »
How can you tell the difference between macular degeneration and Plaquenil toxicity?

The tests for Plaquenil toxicity is the same for Macular Degeneration.

Looks like there is some kind of dye test to take pictures of the retina to document changes.

Interesting articles:

http://www.medrounds.org/amd/2006/09/avoiding-plaquenil-in-amd.html

http://www.medrounds.org/amd/2005/12/plaquenil-amd-and-inflammatory.html

http://eugeneeyecare.com/conditions/Plaquenil-related_Eye_Problems.html

Mrs. Hurts-a-Lot

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Re: Macular spots from plaquenil
« Reply #10 on: November 12, 2011, 10:38:19 AM »
I was checked every 6 months for visual changes. The two tests that the ophthamolgist used were the color bindness test and visual fields. One Sunday afternoon, my rhuematologist called me and said to stop the plaqueniil. I was in the tiny percentage to have my vision affected by that old malaria-fighting drug, plaquenil. It was replaced witth methotrexate  months later. I had been on plaquenil for many  years. In fact, this thread is what made me sign up for the forum.
Judy

jasonsmith

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Re: Macular spots from plaquenil
« Reply #11 on: November 12, 2011, 11:39:23 AM »
There's another antimalarial called Quinacrine (Atabrine). It was replaced by Plaquenil. The Atabrine has to get made up at a compounding pharmacy and it's supposed to not have the retina toxicity risk like the other two.

bloodless

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Re: Macular spots from plaquenil
« Reply #12 on: November 14, 2011, 01:24:38 PM »
Thank you for all your responses. I do trust my eye doc. I think she can tell the spots are caused from plaquenil because of their sudden appearance. Carebear, you are correct. It is a amsler grid test. I'm glad to hear of replacement drugs as I do not want to get sick like I was before starting plaquenil.
I miss the good old days. Things were more like they used to be back then.

Sjogrens, Lupus, Fibro, GERD

beautifulkrissy026

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Re: Macular spots from plaquenil
« Reply #13 on: November 14, 2011, 02:43:26 PM »
My doctor just had me do this new thing where its like a cat scan of the eyes to check for problems from the Plaquenil. The funny thing is when I went on it they said its "rare" for it to cause problems to the eyes. Then two years later there alreasy suspecting problems.

cat

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Re: Macular spots from plaquenil
« Reply #14 on: November 14, 2011, 03:05:11 PM »
My rheumy will not give me plaquenil because I have dry macular degeneration. He says the plaquenil will lead to wet macular degeneration which is what causes blindness.

Cat