Plaquenil and eyes

[dry2010]

Hi,
Does anyone know the guidlines or Plaquenil Toxicity? My eye doctor said there are new guidlines out. She has seen some color change from last years exam and my field vision has some spots. She said the spots are never in the same place where they would be if it was a problem but wants me to retest in six months.

I have been on 400 mg generic plaquenil for 6 years. She said that it does not clear your system damage will progress after stopping it. Scared to keep taking it but honestly don't want to go blind.

I have been skipping doses and am paying for it with stiff fingers upon waking and bad tennis elbow.

[Navigator]

Hi

I do not know what the guidelines are. They are probably too technical for non physicians to interpret correctly.. That being said I would do the following if I was you.

1. Get a second opinion on the eye test results. 
2. Make sure the eye doctor talks directly to your rheumatologist so that between them they can agree on an approach. Your rheumy has probably seen more complications than the average ophthalmologist given that their entire practice is auto immune patients.
3. Plaquenil is not the only drug out there. Your rheumy doesn?t want you to be harmed either. They may switch your meds to one that does not have the eye risk...although it may have others.
4. Tell you rheumy about the joint issues. Maybe something else could be tried that is less potent but gives you relief.

I have noticed (and I was diagnosed in 2009) that I am now waking up with  arthritis in my back and hands that I never had before. It goes away with movement and time.

[dry2010]

Hi Navigator,
I have appt with rhuemy on July 20th for a checkup but no eye exam till Sept. I think I will have her call him to chat thanks for the idea I do not like trying to explain it back and forth. I did a Medrol pack in April helped but issues with elbow never went away completely and came back.

My Rhuemy mentioned Immuran but don't really want to go there. I have really only had two flares in 6 years so don't feel like that is necessary. I wonder if it is because my Vitamin D is 35 Rheumy did not say it was bad but I guess because it is over the low limit of 30 it is ok.


Thanks,
Martha

[Jasper]

March 2016 guidelines for Plaquenil toxicity screening:  American Academy of Opthamology

Recommendations on Screening for Chloroquine and Hydroxychloroquine Retinopathy - 2016

http://www.aao.org/clinical-statement/revised-recommendations-on-screening-chloroquine-h


My Rheumatologist wants screening done every year, including every year during the first 5 years of Plaquenil use. Screening should be done by an Opthamiologist who specializes in this type of exam for Plaquenil toxicity.


Below is the abstract (but go to the website to read the entire article):

"Abstract"

"Background: The American Academy of Ophthalmology recommendations on screening for chloroquine (CQ) and hydroxychloroquine (HCQ) retinopathy are revised in light of new information about the prevalence of toxicity, risk factors, fundus distribution, and effectiveness of screening tools.

Pattern of Retinopathy: Although the locus of toxic damage is parafoveal in many eyes, Asian patients often show an extramacular pattern of damage.

Dose: We recommend a maximum daily HCQ use of
5.0 mg/kg real weight, which correlates better with risk than ideal weight. There are no similar demographic data for CQ, but dose comparisons in older literature suggest using
2.3 mg/kg real weight.

Risk of Toxicity: The risk of toxicity is dependent on daily dose and duration of use. At recommended doses, the risk of toxicity up to 5 years is under 1% and up to 10 years is under 2%, but it rises to almost 20% after 20 years. However, even after 20 years, a patient without toxicity has only a 4% risk of converting in the subsequent year.

Major Risk Factors: High dose and long duration of use are the most significant risks. Other major factors are concomitant renal disease, or use of tamoxifen.

Screening Schedule: A baseline fundus examination should be performed to rule out preexisting maculopathy. Begin annual screening after 5 years for patients on acceptable doses and without major risk factors.

Screening Tests: The primary screening tests are automated visual fields plus spectral-domain optical coherence tomography (SD OCT). These should look beyond the central macula in Asian patients. The multifocal electroretinogram (mfERG) can provide objective corroboration for visual fields, and fundus autofluorescence (FAF) can show damage topographically. Modern screening should detect retinopathy before it is visible in the fundus.

Toxicity: Retinopathy is not reversible, and there is no present therapy. Recognition at an early stage (before any RPE loss) is important to prevent central visual loss. However, questionable test results should be repeated or validated with additional procedures to avoid unnecessary cessation of valuable medication.

Counseling: Patients (and prescribing physicians) should be informed about risk of toxicity, proper dose levels, and the importance of regular annual screening."

[Tharrell]

My optalmologist actually does my Vision field test every six month. She also does two other machines that I have no idea what they are. She then checks my dry eyes thoroughly with the rose bengal staining. I did have some sort of macula problem and I am part asian, so I will bring this up to her at my appointment in August.

Thanks for the info!