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Thread: Build up of Plaq behind your eyes?

  1. #11
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    Good luck on that appointment, Numpty. Be sure to keep us updated.
    I've been on the Restasis for a couple of weeks now, and I think that it is starting to help. We went to the movies on Saturday and I actually had some real tears at the emotional parts! I'll be seeing my ophthalmologist on Thursday, so I'll report too.
    Marla

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    Thanks for keeping us updated. You're right...just because it's rare doesn't mean anything. I hope it's nothing to worry about and that they are very thorough! I hate those dilating drops. Ugh! Can you take some music and headphones with you to help occupy yourself while you wait? Maybe take some audio books?

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    When i went to see my rhuemotologist this week i asked him about the deposits and he agreed that this could be a problem and that is why he says i should see the eye doc every six months and my eye doc is very good. I hope that things will work out for you and i also have very dry eyes and use natural tears every day multiple times especially after using the computer for periods of time . Love and prayers Bonita

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    Hay Numpty

    i have sometihng simular went to regular options appointment and she said she could see discolourtation at back of eye!! so shown letter to remu and hse has took me off plaquenil and reffered me for appointment to eye clini at hosp that was couple of weeks ago so think it will be month or so before i hear from them but i hated that dilation stuff feel like someones moved the floor too my ex went with me the last time ( abotu 7 years ago!)
    on the getting checked regular basis i read up should get checked once a year and still yet my options tried to make it every 2 years ( i'm also in uk and on benefits so don't have ot pay to go) but put my foot down and said no i want it to be doen yearly!!

    hope your problems gets sorted out soon keep us in formed!!! xx

  5. #15
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    Hi, just found this thread, I am starting on hydrochlorquine at the end of next week. I have to get my eyes checked and then a blood test at the clinic. Thanks for sharing this, it helps to know what can happen and to be asprepared as possible.
    mabeljane

  6. #16
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    Numpty

    Good luck in Thursday, the photography isn't terrible... but it's not fun either... They truly do put a flash photo camera up to your eye and take photos (lots of them)! Make sure you have someone to drive you home afterwards as it's a bit more intense than just getting your eyes dilated as per usual. Although bringing headphones is a great idea for waiting and such while your eyes are dilated, you won't be able to use them during the photography as the technician will need to communicate with you continuously to ask you to look in specific directions. Don't sweat it, it's just an odd experience!

    I speak from tons of experience... I have retinopathy of prematurity (retinal tears and damage due to being born 3 months early)... I've been seeing specialists my whole life.. Actually, I just went and seen my retinal specialist last evening to get some baseline info established as I just started Plaquenil in November 2009. His name is Dr. Puklin, he works at the Kresge Eye Institute through Wayne State University in Detroit, MI (I'm just all about the teaching hospitals!) I am already on a schedule to see him every 6 months due to my existing eye condition anyway, so we'll be checking on the Plaquenil at the same time. He seemed confident that the retinopathy that culminates from Plaquenil is quite rare and that they usually don't see it until the patient has been on it for extended periods of time (years and years). There are obviously people who develop issues earlier, there are always exceptions to the norm - as we all know! So I think the key is to be vigilant and make sure you're seeing a specialist that you trust.

    He thinks, even with my existing problems, that as long as the Plaquenil is helping with my lupus symptoms, then he's ok with my staying on it for now. And frankly, I trust his opinion, more-so than any of my other doctors. He also said that the key to this is catching changes early. New floaters or flashes / streaky lights in your periphery are hallmarks of retinal distress and cause for an exam to ensure there's no retinal tearing. Your retina doesn't have the capacity to produce pain in the traditional sense that we all know it, so these visual manifestations are their way of telling us something isn't right.
    Shannon
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    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

  7. #17
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    Hi everyone,
    I saw my ophthalmologist yesterday, and he did the full work-up on my eyes - checked the retinas and everything. Everything tested out as completely normal - no build-up from the Plaq at all. He was happy that the Restasis is already starting to help, so I'm good to go until I see him again in July. What a relief!
    Hugs,
    Marla

  8. #18
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    Would be very leary of the "it's probably not from the Plaquinil"...than what is it??? We have ALL been told to beware of that while on the Plaq....very curious to hear what they come up with at your next visit,,,go with a list of questions for them in an organized fashion.Best of luck.
    Andrea

  9. #19
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    Marla - that's great news!

    Andrea - I would tend to agree with you... I mean, if there are issues, the most logical step would be to remove a "potential" cause to see if it resolves! My situation is a bit different because of the pre-existing condition, but jeez, if anything were to change, my first move would be to stop the Plaq.

    Numpty - How did your appointment go, and how are you feeling? I just today got over my lingering headache from being dilated on Tuesday =(
    Shannon
    Divorced
    Registered Nurse
    Proud Momma to an 8 month old kitten. She was on death's door when I found her and now she growing up into a beautiful cat, she's my baby.


    Life isn't about waiting for the storm to pass... it's about learning how to dance in the rain.

    God, grant me the serenity to accept the things I cannot change...
    The courage to change the things I can...
    And the wisdom to know the difference.

  10. #20
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    Marla - Fantastic news and long may it continue! ~hugs~

    Had my appointment and was totally unprepared for getting a canular (spelling?) put in and being injected wtih dye! >.< I have a horrible fear of needles and to make it worse, I have really bad veins (seems to be a family problem) so took them a couple of attempts to get one in. They tried the backs of my hands but kept missing the veins but finally got one into the side of my arm. The radiologist doing the tests said that he can see the yellow deposits and that my left eye is worse than my right. He also said that the doctor was leaning away from it being caused by the Plaq and that it wasn't active at the moment. So I'm wondering if I have the beginnings of macular degeneration even though I'm a bit on the young side. The Radiologist did say that they dont' expect to see what they're seeing until old age. I know that trying to self diagnose on google is never a good idea but I really can't help myself, I just like to be prepared!

    So the tests were horrible and I don't have any results yet, that's the best update I can give just now but will let you know more once I do.

    Other than that, I had to go see my general doctor yesterday as I now also have Strep throat so am feeling a bit sorry for myself ~lol~

    Hope you're all well and thank you so so much for the support here, you all keep me going somedays I swear ~tight hugs for everyone~

    Claire
    xx
    Numpty:- (num-p-tee) dialect, chiefly Scot, ~n. 1. a bumbling fool: one who is intellectually challenged. 2. widely known in Scotland as an MSP (Member of Scottish Parliament).

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