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Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
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Experience:  Ophthalmology since 1994 with Retina sub-specialty interest
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HYDROXYCHLOROQUINE toxicity in my eyes

Customer Question

I have just been notified by the Medical College of Wisconsin USA that I now have HYDROXYCHLOROQUINE toxicity in my eyes, (Cones). I have been taking Hydroxycloroquine since the age of 14. I am now 51. (Thirty seven years of treatment of SLE (Lupus Nephritis). My field vision show Zero (-0- ) peripheral vision. I see flashes of light, floaters have increased, and phantom objects enter my field of view. Am I entering a stage of permanent blindness?
Submitted: 4 years ago.
Category: Eye
Expert:  Dr. Rick replied 4 years ago.

Dr. Rick :

Hi. I'm online and happy to answer your question today.

Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 8524
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
Dr. Rick and 2 other Eye Specialists are ready to help you
Expert:  Dr. Rick replied 4 years ago.
The retina doctors at the Medical College of Wisconsin are some of the best in the world. You are in good hands there. Everything that can be done to preserve your vision will be done. That being said, your vision may not improve from what it is now, and there is the possibility that it MIGHT, not will, continue to get worse even with stopping the medicine.

Here is a copy of the chapter on Hydroxychloroquine from the 2011 Edition of Duane's Clinical ophthalmology. This chapter covers your condition in more detail then you might want however it covers the topic as well as I would.

"
Chloroquine/Hydroxychloroquine Although hydroxychloroquine is widely used in Britain, North America, and Australia, chloroquine is widely used in Europe, South America, and Asia. Hydroxychloroquine use has markedly increased because it has become a first-line drug for some forms of arthritis and lupus erythematosus.2 Probably all side effects seen with chloroquine can also be seen with hydroxychloroquine, but serious ones are primarily seen in overdose situations. Toxicity to the retina because of these drugs is dose related. The greatest risk for overdosing is in obese patients. The aminoquinolines are absorbed by cellular tissue, and since adipose tissue is relatively acellular, obese patients may be overdosed. A second group that is occasionally overdosed includes small, thin, elderly patients in whom the base dosage of each pill is excessive. An additional group that may show toxic changes are those with renal disease, since this is where the drug is primarily detoxified and higher than normal blood levels may occur2,3,4 (Fig. 33.1).
View FigureFigure 33.1. Chloroquine retinopathy.
Toxic maculopathy is usually reversible only in its earliest phases. If these drugs have caused skin, eyelid, corneal (hydroxychloroquine), or hair changes, this may be an indicator of possible drug-induced retinopathy. Since the aminoquinolines are concentrated in pigmented tissue, macular changes have been thought to progress long after the drug is stopped. The bull's-eye macula is not diagnostic for aminoquinoline-induced disease since a number of other entities can cause this same clinical picture. Although retinal toxicity occurs in patients taking hydroxychloroquine, the incidence is much lower than with chloroquine. How to detect early toxic changes is still the subject of debate. Easterbrook6,7,8,9 has published extensively on chloroquine and hydroxychloroquine retinal toxicity. His current method of examination includes obtaining best corrected vision, examining the cornea with the pupil dilated with retroillumination, and performing an Amsler examination. (He has his patients test themselves every few weeks at home with an Amsler grid.) If the results of the Amsler grid examination are abnormal, a Humphrey field with the 10-2 red and white program is performed. If color vision is deficient on Ishihara testing or if there is any question of a patient's reliability in terms of visual field assessment, fluorescein angiography is done as well. According to Easterbrook, electroretinographic and electro-oculogram studies are either too variable or are abnormal only in late signs of chloroquine retinopathy, so their usefulness is suspect. Color testing is more useful in elderly patients where coincidental age-related macular changes occur. It is also stated that early retinopathy (i.e., small paracentral relative scotomas) (Fig. 33.2) does not appear to progress, at least in the short term. Patients who present with absolute scotomas and positive fluorescein angiography should be warned that their retinopathy may progress even if the chloroquine therapy is discontinued. There are numerous instances of progression of macular and optic nerve damage, even years after these drugs are discontinued. This may not be as true for hydroxychloroquine since the progression of the maculopathy may be significantly less than with chloroquine once the drug is stopped.
View FigureFigure 33.2. Paracentral scotoma secondary to chloroquine toxicity.
Some patients wish to continue taking these drugs even with the visual side effects because only these drugs improve their quality of life. If reproducible abnormalities of the Amsler grids occur in this group of patients, kinetic and static perimetry are obtained. If field defects are confirmed, consultation with the rheumatologist concerning discontinuation of the drug is advised. If the patient is reluctant, one may consider halving the usual dosages and following the patient every 3 to 4 months even with relative paracentral scotomas with serial fields. If, however, there is any progression, the recommendation is to stop the drug. Overview Maculopathy must be bilateral and reproducible by Amsler grid and visual field testing. Transient or unilateral defects are not sufficient reasons to implicate the drug, and are not an indication to stop therapy. Color vision loss is a late change. The goal is to find early changes, such as relative scotomas substantiated by visual fields. Also suspect are patients with retinal changes, color vision loss, absolute scotoma, and decreased vision, since even if the drug is stopped, two thirds of these patients may continue to lose some vision and/or peripheral fields. Patients with early paracentral relative scotomas do not advance when the drug is discontinued. Guidelines for Following Patients on These Agents This is controversial. Morsman et al,10 Morand et al,2 and Levy5 question the need to screen patients on hydroxychloroquine. Spalton11 suggests every 3 years, Levy5 after 10 years, and so on. Blyth and Lane12 suggest ophthalmic examination only after the patient becomes symptomatic. We favor the approach by Easterbrook that is presented here.
  • Initial examination. We prefer a baseline complete eye exam. This includes visual acuity, Amsler grids, color vision, and corneal retroillumination. If abnormalities are in the Amsler grid, automated perimetry is indicated.
  • Follow-up examinations. Hydroxychloroquine: Ophthalmic examination, repeating above baseline studies every 12 to 18 months for patients who are taking less than 6.5 mg/kg of ideal body weight with normal kidney and/or liver function. This is in keeping with the American Academy of Ophthalmology's recommendation for biannual eye exams in normal adults. If taking the drug for more than 6 years, or accumulative dosage of 200 g, patients should be examined at least annually. Warn patients to see you if any change in vision or changes on their home Amsler grid testing. Chloroquine: Perform same tests as above. See patients at least annually if dosage is less than 3.0 mg/kg of ideal body weight. See patients every 6 months if dosage is greater than 3.0 mg/kg body weight, or if they are short, obese, or have renal and/or liver impairment.
American Academy of Ophthalmology recommendations are pending and will be similar to what we have described. Tests
  • Amsler grids appear to be the most cost-effective method of following patients. Monthly home testing is essential, especially if the patient is on higher dosages, long-term therapy, or has renal disease.
  • Routine visual fields are not necessary unless Amsler field defects, abnormal color vision, decreased vision, or abnormal retinal findings are detected. A baseline visual field has been advocated by some.
  • Retroillumination of the cornea with the slitlamp with dilated pupils looking for enhanced Hudson-Stähli line, or more commonly, whorl-like superficial corneal deposits, which, however faint, are early indicators of possible retinal toxicity in hydroxychloroquine patients.
Caution To date, there are no data to show hydroxychloroquine toxicity worsening pre-existing macular degeneration. Common sense may make informed consent and explanation of risk/benefit ratios necessary on an individualized basis."

I hope this is helpful. I would not feel that you heading for permanent blindness at this point. Give the excellent retina physicians time to do what they do best -- save your vision.


Expert:  Dr. Rick replied 4 years ago.

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Customer: replied 4 years ago.

Dr. Rick,
I am confused. I do not understand how you could cut & paste, medical technical information from a research book, as your reply, and expect anyone to understand this medical book, unless they were another doctor. What you sent me reads like any research site. I am sorry, but I am not a doctor. The copy you sent me describes methods of “How-To” detect for toxicity of the retina and that toxic maculopathy is usually reversible only in its earliest phases. In addition, “…How to detect early toxic changes is still the subject of debate…” Patients…should be warned that their retinopathy may progress.

I had to find another research site to decode the research you sent me.

As I struggle to understand your reply, is it correct to say that hydroxychloroquine-toxicity of the cones is “Retinopathy”?

“Retinopathy” is anything leaking in front of my ‘retina’, blocking the light and making it cloudy in front of my retina? (I cannot see at the side (periphery) of my vision).

So, in my case, it would be the hydroxychloroquine obscuring the light from reaching my retina?

In addition, this might, (but not likely), progress to more serious eye disease, like maculopathy? (Macular degeneration?)

Any insight you could give me would be greatly appreciated.

Thank you,

Bob

Expert:  Dr. Rick replied 4 years ago.
Hi. Sorry about that. Yes, Retinopathy is damage to the retina, in your case it is from hydroxychloroquine-toxicity of the cones. There is nothing leaking in front of your retina that is blocking the light so you can't see, but rather a part of the cells (tissue) that makes up your retina (the retina is the "photographic film" inside your eye; cones are the light sensitive part used to see things clearly).

What has happened is that the hydroxychloroquine has "poisoned" a layer of the retina that "feeds" the cones and the cones are "sick" and/or dead. This also has happened to a "brother" cell of the cones, called rods. Rods are used for night and side (peripheral) vision. The fact that theses cells are very sick (or dead) is why you have no peripheral vision and why even your center vision is failing.

Think of your eye as a camera, and the retina the film. Even with a $10,000 dollar camera if you have damaged film, you get damaged pictures. Does that make more sense?

Hydroxychloroquine causes a form of maculopathy. The macula is the name given to a specific part of your retina. It is this part of the retina where the largest concentration of cones are located. The macula is used for reading, watching TV, driving etc. I would bet that this part of your retina has already been damaged to some extent. There has been no connection noted between hydroxychloroquine macular disease and the more common (which you may have heard of in Grandparents etc) age related macular degeneration.

So to review. The hydroxychloroquine has poisoned a part of the retina, which has damaged your cones (and rods), which are the cells required for vision. Stopping the medicine, hopefully , will stop the damage and allow things to heal somewhat. It is important to understand, however, that even with stopping the medicine the retina may continue to be damaged, more cones and rods may die and you may continue to loose vision. How much more? Only time will tell.

Duanes ophthalmology book is a very uptodate source on hydroxychloroquine toxicity. I sometimes forget how technical it is since I deal with retina diseases every day, all day long. I'm forgot myself for a moment there-- sometimes it is harder to pass along information via chat then it would be in person. Please forgive me.

I hope things work out for you and you regain your side vision. I live in Northern Wisconsin and know the folks at MCW well.....you are in excellent hands.

Have a happy Holiday Season and let me know if there is anything else I can add to this topic for you. I would also be happy to help you to better understand what is going on in the upcoming weeks and months if you would like.
Customer: replied 4 years ago.
"...I would also be happy to help you to better understand what is going on in the upcoming weeks and months if you would like....'

Thank you so very much, my eye doctor Cope (Surgeon) will not be back for a couple of weeks. And Dr Han at MCW has set my next appointment for April 2011. . It sounds like they are not going to do anything for me for the next four months, let alone help me better understand what is going on in the upcoming weeks and months. I am so depressed that Dr XXXXX XXXXX was so unwilling to explain anything to me. He just kept asking me more questions, like why I would not push the button during the peripheral testing, he said “did you see the lights as "Pink" and not press the button because they were supposed to be "Red". I have re-taken the test four times, and I still do not see any lights. I see the laser lights when they are measuring my optic nerve, but never see any during the peripheral testing. I would think they could adjust the computer to continue to come in closer to the center of my vision so they could actually measure where my vision stops. Instead of tunnel vision, I must be looking through a straw. I have been going to plaquinal testing every three months, then, all of a sudden, I could not see any peripheral lights. You have been very helpful. I hope to have some money by Christmas to "Accept your Answer"

Thank you so very much.

Luanne J. Trimarco D.O.B. 07-26-1959

Expert:  Dr. Rick replied 4 years ago.
You are very welcome. Dr. Han is very, very well respected in the Retina community. I'm sorry to hear that he is not explaining things to you as well as he could.

Feel free to contact me anytime with any questions or concerns you have......I'll try not to cut and paste the answer from an Ophthalmology textbook :o)

Keep up a positive attitude and we can get through this together.

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Dr. Rick
Dr. Rick
Ophthalmologist & Retina Specialist
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Ophthalmology since 1994 with Retina sub-specialty interest