Plaquenil and Eye Problems | Arthritis Information
So, I dutifully scheduled field vision tests every 6 months (3 times in 18 months and my fired rheumatologist who put me on Plaquenil for my now non-existent lupus never recommended the tests, as I did the research and booked the tests myself), and now 6 months after stopping, I am in suddenly in deep eye doo-doo.
A few weeks ago my wonderful opthalmogist did a three-month check for a follow-up to my LEFT eye corneal ulcer (still healing, but it will never be the same in that area), and he started the eye exam with my right eye and went "uh uh". I have a large dry spot, with pigmentation in the white growing over into the cornea. He was very unhappy. I am to return in 3 weeks (next Monday) to see if its growing, and if so, he is going to biopsy my eye. Now that is enough to make me barf. He said he doesn't want to do it because with autoimmune, it won't heal right. I can feel my blink and its get stuck on the spot for a second, yuck.
So, I memorize the dx code on my paperwork in the quick checkout, and its for a neoplasm, unknown. Great. (How come you never get any paperwork from doctors anymore, its always "you will get a bill from our billing service"? I have to pound every doctor office for paperwork at each visit. It's mine right? I am paying for the service, doesn't a receipt mean anything anymore? I digress.)
But I have been doing alot of research on Plaquenil and eye effects, which is the big warning all over it (thus the recommended eye testing), and it seems that fallout can happen years later and that pigmentation build up is one symptom. So I am feeling more confident that this is Plaquenil fallout and just pigmentation buildup, not regular eye cancer, hopefully.
And I never even had to go on this medication if the double-stranded (I only had a single strand done by an internist before diagnosis of RA by this fired rheumy) DNA test had been done, which is the definitive test to confirm or rule out lupus, the dx by this rheumatologist. I got my wonderful primary to do it to rule it out. The dermatologist did a skin biopsy, and I don't have scleroderma either, so my fired rheumy was 2 out of 4 of scaring me to death two years ago and putting me on all these toxins.
I am so glad I stopped the Plaquenil on my own, even before the confirming DNA test.
I really do not have much respect for this profession, no standards, no morals, just shoot from the hip from one blood test done 2 years ago. I am so over these morons.
Cathy -
Take your little diagnositic code over to Pubmed and search and see what you can come up with.
Hugs,
And don't get scared - this can work out and you'll be OK.
Hugs again,
Pip
I'm sorry you're having these issues with your eyes.. I take Restasis 2X a day for the dryness and to prevent issues.... and 3month exams by optho
I don't think you should stereotype "this profession" based on one RD's idiotic DX'ing ... are you not seeing an RD now?
Babs - while she was dealing with her MCTD disease she blew thru over 30 MD's in many years. The rheumy was just the worst - not the only.
Hugs,
Pip
Just---I agree with you 100%. They prescribed Plaquenil for me a while back. I did not want the drug and the more I said no the harder they pushed. I felt any risk of eye problems was too high a risk for me to take. I had a horrible reaction to the stuff and stopped taking it--even after spending over for the drug! Several times in his office I have said "No more drugs". Well, I hope all goes well for you. Go by your gut feelings--you have to live with your body--not the doctor. Actually, the worst rheumy was the first time I was referred to rheumatology and he refused to test me and said I needed a shrink. Years later I picked up my records to go this last clown, and my husband and I were shocked at what he wrote (never said any of this to us, as my hubby was in the room). And lo and behold, there was a letter in there from the great opthamalogist I am seeing, suggesting MCTD - four years before. Morons.
I have now seen four RDs, all with differing opinions. My primary is so pissed off she has taken over all my care, including my rheumatology needs, and she says she NEVER takes on complicated cases because she usually treats colds and boo boos. Its been working great. She is shocked at what has happened too while under her care with these RDs.
PS Thanks to the poster who told me pigmentation from Plaquenil is usually in the retina, not where I have it. Not good. Just Say,
Having RA is tough enough to deal with, especially after all those bad experiences with RA docs -- I'm very sorry to hear you're having this eye problem.
I was on plaquenil for a while, I never had any problems, but the possibility of it affecting my eyes was a worry so I discontinued, even though I was reassured by many eye docs they rarely saw any patients with problems.
I hope the problem w/your eye can be managed, will keep you in my thoughts and hope for the best outcome.
Just, are you in sunny Florida? Be sure to faithfully wear your sunnies -- you probably do already. Take care. Joy
Justsaynoemore,
Sorry to hear about all of your trials and tribulations with these Dr.s Thank God though for your PCP who is taking over. I hope you will get some speedy answers to your eye problem and that it isn't anything serious. Take care.
I don't think the Plaquenil is the problem, but I've been wrong before. I have been on iit for quite a few years and I see my opthamologist once a year now (used to be every six months) and I see a retinal surgeon every six months and neither of them see a problem with Plaquenil. I had surgery for a detached retina while taking it and was very concerned at the time, but am assured that had nothing to do with the meds.
Try not to worry too much until you get some test results. They are doing miracles as far as eye car and surgery is concerned.
Ann
JSNM-
Sorry for the problems. Praying for best outcome.
Jan
Thank you everyone - it could be nothing or something big, usually its migration from a main cancer source. This could be a blessing in disguise. I'm so sorry you are going through this. I hope it is nothing serious.
However, know that cancer is very treatable. Your highest risk of cancer is probably lymphoma since you have auto-immune diseases. I've had lymphoma and have learned that it is very very treatable. I had to take treatment for 4 months. That was in 2004.
Believe me my RA is a lot worse than the lymphoma was. A benefit is that tx helps with the autoimmune diseases.
I hope it turns out to be some benign nothing, which in my experience that is the most likely outcome. You would be surprised at how many times the Dr. says something like neoplasm and it isn't. With RA, I have had the neoplasm word used a lot. It turns out that inflammation can create masses (nodules) that are just clusters of white blood cells. While being treated for lymphoma, other nodules were found in my lungs and said to be a neoplasm other than lymphoma. That really freaked me out. Turns out it was just inflammation (like rheumatoid nodules in my lungs).
So it is most likely nothing. Try not to worry.
Judy
I was diagnosed 5 years ago with a pituitary adenoma, which is a small tumour on my brain, it has always remained dormant and is benign, I have a visual field defect. I was put on plaquenil 7 months ago by my rheumatologist, who was fully aware of my tumour.
I went to see my ophthalmologist last Thursday and had my visual fields done. My fields have deteriotated dramatically, and when the ophthalmologist found out that I had been taking plaquenil he was very angry.
So at the moment I am waiting an emergency MRI scan to determine whether the tumour has grown and has caused the deteriotation or whether it is a result of taking the Plaquenil!!
I'm stunned and shocked at the moment and very frightened. I have had to stop taking Plaquenil immediately, and the rheumatologist who I thought was very good, obviously isn't.
Judy - I hear you.
May - my thoughts and prayers are with you, let us know how the emergency testing turns out. It is scary to think that doctors have no integration with each other, or pay attention to our histories and do not take this into consideration when handing out toxic drugs like candy. I am convinced the treatment of autoimmune is the greatest money-making charade in all of medicine.
Take care Cathy
justsaynoemore2008-07-21 03:26:26JSNM, I am sorry that you've had such a horrible time w/ MDs.. I don't see any MDs... I have all OD's except my optho. I think they take the BIG picture into consideration over MDs.
I wish you the best with this issue ........ take good care!
babs
[QUOTE=babs10]JSNM, I am sorry that you've had such a horrible time w/ MDs.. I don't see any MDs... I have all OD's except my optho. I think they take the BIG picture into consideration over MDs.
I looked in Tammi Schlotzhauer's Living with Rheumatoid Arthritis. She says the principal concern with antimalarial durgs is the risk of eye problems (retinopathy). When eye exams are performed by Ophthalmologist every 6 months and medication is discontinued immediately, the risk of permanent eye damage approaches 0 percent.
Your ophthalmologist may also mention that he or she has detected deposits on the cornea. This APPEARS to be a reversible side effect that does not warrant a change in therapy. APPEARS sounds like she is unsure. How is it reversed if the drug is not stopped????? This doesn't make sense.
She also says the manufacturer of Plaquenil recommends an ophthalmologic exam every 3 months.
She says 18-46% of patients have corneal deposits but says to continue medication. What???
It sounds like they don't KNOW the effects for sure. Anyone else seen this?
Jan
This is the most discouraging thread I have read in so long. I wondered why all of a sudden they are recommending all patients have eye exams every 6 months rather than yearly. I mean, there must be more to this story. I just went back on and this is seriously making me consider going off of it for good. I really love my eye sight. This just sucks for everyone involved.
My ophthalmologist told me that eye problems are very very rare with the use of plaq. Is he lying to me? Here is a link to the ACR position paper on plaquenil and retinopathy.
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