Did he do a visual field test? You need a new Ophthalmologist! I can't believe he would tell you it is possibly responsible for the changes he is seeing but to go ahead and take it and not see you for a year. He is a humongous idiot! Be careful with your eyes. Too bad JSNM is not here due to Storm Faye.Both my Mom and I were on plaquenil. My RD suggested 6 month eye checks. This particular opthalmologist did visual fields as part of the exam.
My Mom had lost a lot of vision in one eye as a result of unsuccessful repair of a retina tear, though this was back i think in the 60s or so. Anyways, we were always concerned about maintaining the vision in her better eye. A new young associate of the eye doc we both had been seeing, suggested Mom discontinue the plaquenil. His boss, the senior eye doc, disagreed, claiming there were few cases of plaquenil toxicity. My Mom fearful of declining vision in her remaining good eye stopped plaquenil. Given my Mom's history w/eye problems, and also my sister's (she had a retina tear tho never on plaquenil) I chose to discontinue also.
So my point is, from my experience, there are different opinions out there, but in the end, its our vision. As others have suggested, seek out a second opinion, get a good reference if you can.
Your eye doc notices retina changes, but yet wants to wait a year to recheck you? Wouldn't it better to recheck you after six months?
After I went off plaquenil, I went on mtx pills. That was in 1986. See a RA, perhaps there are other alternatives to plaquenil, maybe even that antiobiotic treatment, since your RA isn't severe. Good luck, I know firsthand how difficult your situation is, as I lived it with my Mom and myself. Take care.
My Ophthamologist said that Plaquenil has a cummulative effect and they don't generally see changes until after the 5 year mark. Maybe that's why the eye doc was unsure about whether or not the Plaquenil was causing the problem.
I'd definitely get an RD. You need one, Lorster. I think if this were me, my RD would probably change my DMARD because it's better to be safe than sorry.
I had the most wonderful RD but two years ago, he died suddenly from a massive heart attack. He was out cross country skiing and just dropped dead. He was 62. My internist, who is his partner has taken over the care of my RA but to be honest, she really has no clue. Since my disease is mild right now, I have not taken the time to pursue a new doc. Plus, there are none in my community so it would mean traveling at least 140 miles each way with a 6 month wait to see a new one. So, here I sit with no direction. Who knows, I could be that 1 to 5 percent who gets toxic with this stuff.
I was also a bit concerned why he didn't want to recheck in 6 months. Again, there is only one group of ophthalmologists in my town so I would have to travel to get another opinion.
Is the visual field test the one where they have you look at the dot and then press the button whenever you see a red spot? If so, they did that as well as a ton of other tests. I think they covered it all.
I think I am going to search for a rheumy and get some direction going with this. I wish I could just ignore this and it would go away. I'm tired of the care and maintenance of this monster. Thanks all for your advice. Lor, Yeah, the test with the red dots is a visual field. Maybe after you see a RD doc and get established on a new med, you could be followed by your gp and see the RD doc say like once a year. Just a thought. Good luck and take care.
Do any of you have any suggestions for a single DMARD for mild to moderate disease? Many don't consider Plaq to be a DMARD, more an antimicrobial that basically takes care of inflammation of soft tissue. I have no joint damage thus far but I do have swelling and pain (which is manageable). My RFactor is now positive again and my internist told me my disease can go from mild to severe....no one really knows if and when. I always thought that you either had mild to moderate or moderate, or severe. Anyone every hear if it can go from mild to severe? I have so many questions all the time. One of my fears is that I will wake up one morning, totally swollen and unable to get out of bed. That is why I take the plaq, to hope that that will not happen. I'm sure it is the reason many of us are on these meds. Fish oil (omega 3s)? Methotrexate?Lorster,
Not to scare you, but I went from mild to what my RD said was "moderate-to-severely" active. When my flares were mild, I had only a few joints involved at time. Then when the Plaquenil stopped working, it just took off. Within just a few months, almost my whole body was involved. I remember crying and asking my husband to take me to the ER. I never want to go to the ER, so hubby knew I was bad.
Another choice for a DMARD would be Methotrexate, Arava, or even Sulfasalazine. You could try one of those. I'd definitely think about getting off the Plaquenil. You don't want to lose your vision. I find it hard to believe your eye doc wanted to wait a whole year. Did you suggest a 6 month follow-up instead? Maybe you should take a trip to a nearby town for an RD and another eye doc too?
I was on Sulfersalizine the first few years and it worked well for me. Maybe a low dose of MTX could be an option. Sounds like you're looking for a low dose as a safety net type thing right now and I think that's wise. I have great success with MTX. I went from severe to mild using it. From what my doctor says about it though I should probably give a disclaimer that says "These results are not typical".
I found Arava to be one of the best ones to take, i have been taking it now for 4 years with no side effects at all
I have been on Plaquenil for several years. At first the RD insisted I see the Opthamologist for base line and 6 months exams. Then Eye doc said once a year would be fine. When I went to him with flashing lights in one eye, he sent me to a retinal specialist who performed laser surgery for a detached retina. Both eye doctors said I could stay on Plaq, which did not cause the problem, but both insist on annual field vision tests
You need to get an appt with an Rd very soon and you need to get a new opthamologist. This one doesn't seem to be very modern in his approach.
Ann
Ann, don't you think that someone with a detached retina requiring surgery and also on plaquinil is a red flag for the doctor? How could they think that is not related? Would you have gotten that if you had never taken the plaq? How do they know that the plaq does not contribute to the retina detaching? I just find it strange that I had no retinal problems until I started the plaq. I will stay on it until I see a new RD because I do enjoy getting out of bed in the morning, lol. Oh, and it is the best acne medication around. I would say if there is any question stop the plaquinil. You eyes are too important to fool with. Lorster,
I was an Ophthalmic asst for 14 years and I think during that time we had 1 pt with some pretty extensive visual field loss from Plaquenil, but like you said you don't want to be in that 1-5%! We did visual fields every 6 months back then. I found an article that you can take a look at. I tried to copy and paste the ocular effects but it would'nt let me
all the best to you
edited by me to add the link
Pam S2008-08-30 17:27:47Sorry I am late to chime in but I have been an optician for 20 years now and have seen all sorts of eye stuff! Placquneil usually causes deposits on the retina, I have never heard of a link between a retinal detachment and placquenil use. Retinal detachments can happen to anyone, flashes of lights and a whole lot of floaters at once, like someone threw dirt in your eye or curtains and veils over part of your vision are hallmark signs of retinal detachments.
Placquneil eye toxiticity is relatively uncommon but it does happen. If I were in your shoes, or had your eyes, I would make an appt with an actual retinal specialist, not just an opthalmologist. Drive if you have to, this is important. I would ask your current doc treating your RA about switiching you to either alsulfadine or imuran or possibly the mtx. I would definitely NOT leave it be for an entire year.
Lori, I went from no symptoms for 5 years to a severe flare and bedridden. It can happen overnight or not happen. It's a crap shoot! I've been on MXT, Sulfasalazine as dmards and it's been over 2 years and no negative side effects, only positive ones - clinical remission. They're going to have to pry my dmards and biologics from my fingers to take them away. But then if it meant my sight I might gladly give it up and look for something else. You always have options and even AP might be an option for you. LindyLindy, how did yours start? Just a few symptoms, stiffness, an achey joint once in a while? Can you give me an idea of how yours progressed? This is what scares me. My RD told me with having a positive factor, I could very well go a few years and then bam, it could hit me hard. Is RA what ended your nursing career? Maybe I'm a bit too lax. I do have some good news. We are getting a rheumy the end of November so we now have one. I will call and make an appt with him as soon as he takes them.
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