Author Topic: eye test and plaquenil  (Read 616 times)

Confused

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eye test and plaquenil
« on: November 10, 2021, 10:50:09 PM »
Did any of you take the eye test before trying plaquenil?

See there are 3 of them now.  Mine involved whether I could see red dots appear in a mass of white ones.  I did not pass and as plaquenil can cause  blindness that was a no for me and plaquenil.

I am wondering if they are still doing this.  My eye test was to be done with another test but since I flunked the major one I chose to not chance my eyes and am having issues as it is.

Linda196

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Re: eye test and plaquenil
« Reply #1 on: November 12, 2021, 05:37:05 PM »
Before I could fill my first prescription, I had visual field testing similar to what you describe, and a dilated thorough exam. Since then I have had those repeated yearly, and several years ago an OCT was added. I'm actually due for the three tests plus my regular vision check for lens changes, and cataract monitoring at the end of this month.

I've never had any negative results, but my Plaquenil was reduced anyway a few years ago due to the length of time I've been taking it, 17 years, now, and concerns about "accumulation toxicity".
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Confused

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Re: eye test and plaquenil
« Reply #2 on: November 12, 2021, 08:58:54 PM »
I swear your doctors have  things together so much better.  Here, it is 5 years and you stop.  Of course that could be because I think most doctors do not know what the heck they are doing.  This is definitely a you better double check what the heck they tell you place, plus you better keep copies of every blasted test you take. 

Am making a major switch in doctors before the one I have does me in.  I hate this everything is on line.  Thank heavens the gal who checked me in went over all sorts of things that some doctor at some time wrote concerning meds (I have to be so careful of meds) that I cannot take and adding in meds and opening things that were so far out of line the gal started putting I disputed the med or what ever the issue it was.  Standard check in sheet as to what meds you are on and what you are supposedly allergic to, leaving out the ones that are absolutly major issues.  Seems these on line systems go all around and can pick up stuff from all doctors that have put stuff on line.  That will be cute as I am hoping that the doc I have now does not see what has been changed.  She has refused to give me my test results on whether I have any antibodies from the first vaccine that I had an allergic reaction to.   Could be interesting, but at my age she is going to lose badly if she tries any more games as I have enough on her to take her license, which I won't bother to waste time on.

Forgot it was because of toxicity on the plaq.  Thanks and to everyone out there get copies of tests and write ups of docs visits or record them and take an advocate!

I may just live in a weird state but I will bet money as they start putting more things on line you should get copies of everything and get them as they happen and keep them logically somewhere so you can pull it out when some doc wants to cut a nerve that will make you drag your leg for the rest of your life.

Am sure this didn't come across right as am in major flare but hopefully you got the Keep your test results and write ups from each doctor visit!
« Last Edit: November 14, 2021, 06:51:32 PM by Confused »

meirish

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Re: eye test and plaquenil
« Reply #3 on: November 24, 2021, 01:35:41 PM »
I have had the eye testing for years--vision field and everything else as I am also diabetic. I have been on the Plaquenil for about 13- to 15 years and can't remember when I started. I am also a stubborn bugger and I refuse to take plaquenil when I am on antibiotics in order to help protect my liver and kidneys, etc. Plus, so many antibiotics cause stomach issues and I have GERD and can get huge heartburn with some of these drugs.

Because I was diagnosed with severely low t-cells back in 2006 I was on a large amount of antibiotics for infections until probably 5 years ago or so. I have been on IVIG since 2006 for my myasthenia gravis and it also has helped improve my t-cells so the antibiotic use is much less. I have not taken the Plaguenil since mid June as I have had GI bleeds in June and again in July that were from probably 30 mgm prednisone for 5 days taken prior to augmentin and then a bleed due to AVMs in my colon in July. I have moved and gone through heck trying to get new doctors and getting set up with a colonoscopy.

So...I am still off the Plaquenil as I had such bad heartburn this past summer. I now want to restart it again as I am aching all over and life is sort of miserable at times. But...my immunologist retired and several of my specialists will not reorder it for me. I am now waiting to see another neuro in Jan(don't even ask me to describe the HECK I went through with the first neuro I saw. She was beyond everything any of us could imagine. She even lowered my IVIG and now my infusion center is worrying about me getting into trouble with my myasthenia. Some days a fella doesn't have to go looking for trouble....it just shows up.

I got on a tangent. Sorry!! Anyway. my optometrist daughter in law who treats me and happens to be very, very good and beyond what one expects from an optometrist, has informed me that many doctors these days are just in a panic over the Plaquenil and the eyes. She said they are often misinterpreting the testing that is done to check the eyes for toxicity and scaring people to death. That puts all of us people on this drug in a rough spot.

Another thing to take into consideration is that the dose of Plaquenil that we take for autoimmune issues is way lower than the doses taken to treat malaria.. This drug is an anti parasitic given to malaria patients decades ago and stilll used.. It was noticed that the Rheumatoid arthritis and lupus patients on Plaquenil had much decrease in pain and inflammatory issues. This is the way it meandered into the autoimmune treatment section. It is the drug of choice for new sjogrens patients. I've gone through this many times so apologies to the older clients on this forum.

So often there are issues that get misinterpreted and scewed in the telling over the years. I think the latest covid controversy has made it hard for me to get my plaquenil restarted.  I guess I better button my lip now. Enough said, meirish

Deb 27

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Re: eye test and plaquenil
« Reply #4 on: November 30, 2021, 04:07:59 PM »
I didn't get a visual field test like you described until many years after I had been on plaquenil. No doctor had ever told me about it until then...... The few years that I had the test, I passed. I quit taking plaquenil due to other side effects.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.