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Plaquenil, Anyone with toxicity leading to eye problems?


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#1 Sweet

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Posted 03 October 2012 - 05:19 PM

Hi All,

I've been on Plaquenil for almost 13 years. It certainly has helped with my fatigue and pain. As many of you know it can cause irreversible eye damage, causing vision loss. Due to this, I have eye exams every 6-9 months. In the most recent years, (last 2-3) they have let me go yearly. This year has shown vision changes. In my testing last week, even with correction he couldn't get my left eye to see 20/20. I have Sjogrens as well, so the DRY factor is pretty big. In the eye exam, he didn't see anything that would indicate a problem. They did an Ultrasound of my eye (never heard of that before) and it was normal as well. There are some new tests, that sound like torture in my opinion that I'm scheduled for next month. Once I have it done I'll explain what they did, because I haven't a clue at this point.

Anyway, I'm worried that I may be to the point where they are going to stop Plaquenil due to toxicity. Has anyone had this issue before? And if so, what was the next drug of choice? Methotrexate?

Thanks,
Warm and gentle hugs,

Pamela
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#2 miocean

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Posted 03 October 2012 - 09:02 PM

Hi Sweet,

I have not been on plaquenil but have vision issues. I have worn bifocals since 4th grade and probably should have been vision tested sooner. I was thrilled at the age of 16 to wear contact lenses. Unfortunately, when scleroderma hit my facial skin tightened and my eyes dried. In order to take my gas permeable lenses out, I had to pull my eye to the side and blink. Not being able to do that any more I returned to wearing bifocals.

It seems like every year my vision changes. In my yearly check-up about 10 months after my kidney transplant my vision improved. I was thrilled. The next year my vision worsened. I am taking myfortic as an anti-rejection drug which is similar to cellcept. I am extremely near sighted with an astigmatism in my right eye. I cannot be corrected to 20/20. Due to the high level of correction needed my lenses would be very thick and heavy so I have to go to a special optician and have a lens made that is lighter and thinner. My glasses are really expensive because of this and I don't even get transitional bifocals or the kind that darken in the sun. I need both regular glasses and sunglasses so every year it has been an expense. I see my opthamologist in December and will see what has happened this year.

To top it off, the ocean is now the home of two pairs of prescription sunglasses, a rather expensive token of appreciation for being able to swim in it again. After my screening this year I am going to look into prescription swim googles. I hate not being able to see.

I hope you get an answer to all of this and if your plaquenil has to be stopped there is another medication that can help with no additional side effects.
Keep us posted, okay?

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#3 Buttons

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Posted 04 October 2012 - 08:57 AM

Hi Sweet, sorry to hear about your vision issues. I take methotrexate because I couldn't have Plaquenil due to my eye problems, I have been fine on it so far, I take tablets 1 day each week & also have to have folic acid tablets as well on the other days. I do feel slightly queasy the evening I take it but it's not horrendous. I have felt so much better for taking it and joint pain in my hands has eased and fatigue has improved.

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#4 Shelley Ensz

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Posted 04 October 2012 - 02:06 PM

Hi Miocean,

I got prescription goggles several years back. They were very cheap, like under $25 altogether, and I had put it off for years, as I thought they'd cost a fortune. I need a new pair now as I finally managed to break my first pair. In addition to being able to see, they also protected my dry eyes from the even more drying effects of chlorine.
Warm Hugs,

Shelley Ensz
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#5 Shelley Ensz

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Posted 04 October 2012 - 02:13 PM

Hi Sweet,

I'm sorry you have are having worsened vision problems. I was on plaquenil for years but had to discontinue it when it caused an exacerbation of psoriasis. I had my regular plaquenil eye exams but my opthalmologist said plaquenil eye problems are so rare, that he'd never seen a single case in his entire career. And he was mighty old, too.

This year I had vision problems due to a rare side effect of gabapentin. Oddly enough, it suddenly greatly improved my eyesight, which made my glasses way too strong, which made my vision very blurry (so I thought my vision was suddenly worse, but vision testing proved it was actually suddenly lots better). I went off the gabapentin (Neurontin) and it took months for my vision to stabilize enough that I could get new glasses. Happily, I still have much better vision than before I started on the gabapentin. Go figure!

I wasn't aware they had fancier tests than what they dish out in-office. Please let us know what they are...and what you find out. I especially hope that some of your vision loss is reversible.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#6 Buttons

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Posted 05 October 2012 - 12:12 PM

Sweet, I've just remembered about one of the tests they did on my eyes which was a Fluorescein Angiogram, it shows the blood vessels in the eye so they can see if there is any damage. It is not painful, all they did was to put a cannula into my hand and then they put a yellow dye in, they wait for a few minutes and take photographs of the eye. It's quite funny after because you look yellow and for a while when you pass water it is bright yellow! Following mine I had to have laser surgery to try to release a build of fluid at the back of the eye which was causing the layers to separate and so distorted my vision, I did have quite a bit of improvement but still have some problems.

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#7 Amanda Thorpe

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Posted 07 October 2012 - 08:04 AM

Hello Sweet

I am new to plaquenil as in just starting to feel any benefit, I think it's helping with fatigue...hooray! Maybe I can be awake more than 5 hours a day!

I am sorry plaquenil may be a no go for you now and don't know of an alternative drug. As it's an antimalarial would it be something like mepacrine also an antimalarial with anti inflammatory effects used to treat lupus?

Take care.
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#8 Sweet

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Posted 08 October 2012 - 10:36 AM

Thank you guys so much for the insight. Shelley your story is funny. How many people would LOVE for their vision to improve! I honestly think that the Sjogrens is to blame for most of this, not the Plaquenil. Everything is distorted when your eyelid is stuck to your eye haha. Anyway, thanks for the input, and I will let you know about the upcoming tests I'm having.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Shelley Ensz

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Posted 11 October 2012 - 12:25 PM

Hi Sweet,

Although it is truly wonderful to have vision improve drastically, the odd/bad thing about having it improve as I did is that the changes were inconsistent, so I had to wait for months until my vision had settled down, before getting new glasses. And in the meantime, everything was blurry, both with my (old/too strong) glasses and without. Now I am delighted to have both better, and stable, vision.

I really hope your upcoming tests find something that can be improved, Sweet.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#10 Sweet

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Posted 15 October 2012 - 06:02 PM

Thank you Shelley :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)