I am writing this to warn everybody who is using this drug because you have probably no idea how dangerous it can be. I am now in a rather severe stage of Chloroquine Retinopathy and I thought I was doing fine a month ago. The damage is irreversible and will probably make me blind
"Oh, but I am doing regularly check-ups" - so did I but it still happened.
"The chances of side effects are so small" - they are a lot bigger then you think.
So please consider stop taking this drug!
I am too depressed right now to write more now on but I really want to warn people about this before it happens to more people (and it?s happening right now).
I am also desperate to get in touch with people who suffers from Chloroquine/Hydroxychloroquine Retinopathy so we can share some knowledge (send a mail or post it here)!
Once again - please consider getting of this drug!
(Thanks for letting me join this Forum and I am sorry for being so drastic).
I'm very sorry for your situation :( I stopped taking it a long time ago, because it upsetted my stomach very badly. I was kinda relief just because that meant that I didn't have to worry about my eyes anymore, at least not in that regard.
I don't know if this helps, but there's a support group in facebook, called "Plaquenil and Plaquenil Toxicity Support & Awareness Group". Maybe that would be something for you?
Quote from: eija on August 24, 2017, 12:56:12 PM
I don't know if this helps, but there's a support group in facebook, called "Plaquenil and Plaquenil Toxicity Support & Awareness Group". Maybe that would be something for you?
Thank you very much, this is exactly what I was looking for!
I wonder if you were going once or twice a year and having the newer test to check the retina. I have a lot of tests done every year. I am sorry that you are suffering from this. It doesn't happen very often because of the lower dose of Plaquenil that we take. I hope you find people who can communicate with you. Irish
Dearest Sjogren's Angels,
This post reminds me again that everything we do carries risk.
It is important to be aware of the risks, and also to be aware that one person's experience is not a clinical study.
We use our best resources and judgement when we must deal with the effects of our chronic conditions.
Just was we should not adopt a new treatment/medication based on the positive experiences of one person, so we should not abandon our treatment/medication based on negative experiences of one person.
I hope that one day doctors will be able to identify those who are good candidates for a treatment, and those who may suffer from the treatment, by using genetic markers.
We are far from that day, and for now we must weigh our chances. 1) what are the statistical probabilities of damage from a drug?. 2) what are the benefits of the drug?, and 3) what are the alternatives to the drug?
I am sorry you are experiencing this probable frightening and life changing result of taking chloroquine because you are probably going blind, Bamberbrian.
I have not been able to find any support groups for people with damage from chloroquine in my first attempts using Google. But I'm sure there must be some groups.
This book might be of help and perhaps you can contact the author for support and information:
go to play.google.com/store/books/and search C3ceBAAAQBAJ&rdid=book-C3ceBAAAQBAJ&rdot=1&source=gbs_vpt_read. The book title is Hydroxychloroquine and Chloroquine Retinopathy by David J. Browning
Please keep us posted on your progress, both with your health and with your efforts to find a community of those with negative experiences using chloroquine.
Regards, Elaine
Here is a good article. I think you will be especially interested in the comments at the end.
info.sjogrens.org/conquering-sjogrens/bid/354124/The-Risk-of-Retinal-Toxicity-with-Plaquenil
My eye doctor uses the OPTOS Retinal Exam to check my macula and my retina.
I, do appreciate your post. I was given Plaquenil in 1998 and didn't take it long for that reason and tried to go the natural route, which is mainly diet.
I was just given a new prescription, and your post definitely got my attention and I appreciate you taking the time to post. I cannot imagine your pain.
I would like to ask, how long did you take it?
Bamberbrian, I am so very sorry about your eyes. I hope something can be done to save your sight. I, too, am on Plaquenil. Have been on it for about five years now. I get my retinas checked every six months, but I have also read that sometimes the damage is more permanent than we think. Thank you for your post. I have been thinking of stopping the Plaquenil anyway for just this reason.
LucyD
I am sorry that you are suffering from vision problems, but would like you to tell us your history with this. Like how long you took the medication and what your diagnoses are. I have a daughter in law who is an eye doctor and does all the really necessary scans, etc. She says that there are not many cases of eye issues seen from Plaquenil because we take an lower dosage of the med. Typically the higher dosages used to treat malaria is what can cause the eye issues.
We have had a couple people on here who have had issues that were supposed to be from plaquenil and stopping the drug seemed to resolve the problem. The retinal scan test is the one that helps keep track of the condition of the retina from the med and is also used to check diabetic patients eyes. My eye clinic didn't own this machine until 2 years ago. They would lease bone a couple of times a year and schedule all their patients for the scans at this time.
I am also wondering if there is any other medication that you are aware of that could increase the chance of eye damage when taken with Plaquenil. Hopefully your eyes will improve over time. Irish
My eye doctor told me that the only time he has ever since the plaquenil toxicity is with obese patients. And, I replied, you mean people who are obese who have diabetes or heart conditions, other medical conditions. And, he said, exactly!
Hydroxychloroquine-Induced Retinal Toxicity – lists the risks for toxicity and Differential Diagnosis of Bull's-Eye Maculopathy
aao.org/eyenet/article/hydroxychloroquine-induced-retinal-toxicity
Protecting your eyesight when taking Plaquenil
resources.lupus.org/entry/plaquenil-and-eye-health
Rx Side Effects: New Plaquenil Guidelines and More
aao.org/eyenet/article/rx-side-effects-new-plaquenil-guidelines-more
Another, really good article.
Lighthouse, I am too tired tonight to look at your links, but I was just wondering if it would help if a person increased their fluid intake. Maybe the toxicity would be less apt to develop. Just a thought. Irish
I have to chime in now that I see this. I took one dose and went blind for six hours. The length of time it took my body to eliminated it. I use alternative therapy of supplements now. It made me check all drugs and supplements for side effects, counter indications and drug interactions.
The Rhuemy's comment was, "Wouldn't you rather be blind and with out pain?" I found another Rhuemy.
Quote from: irish on August 26, 2017, 11:44:49 PM
Lighthouse, I am too tired tonight to look at your links, but I was just wondering if it would help if a person increased their fluid intake. Maybe the toxicity would be less apt to develop. Just a thought. Irish
I believe Irish, that you may be on to something because one of the articles I posted, says that one of the high risks for plaquenil toxicity is:
concomitant renal or liver disease (because the drug is cleared by both routes)
So, it makes since the more water you drink, the quicker the drug can clear your system.
Joe, I have to add that the remark about blindness from your doctor is one of the dumbest I have heard in a while.
I will add though that the treatment for autoimmune eye disease is hard on a person. The only treatment is IV solumedrol 1000 mgm once a month for up to 20 months. In did 5 months and was starting to have tremors and feel like my depression was going to get out of control.
My immunologist felt bad that I quit as he doesn't want me to lose my hearing. Well I have no hearing one ear and about 50-60% in the other and it is getting harder to keep up with conversations. However, I told my doc that I would rather lose my hearing than my sanity. At least being deaf there are lots of options now with all the electronics. The older a person is I think they become a little less invasive in their qwest for treatment.
Hey Joe, Are you and Jan enjoying the wonderful Minnesota sweet corn. I don't like being diabetic when corn season is here. It makes my blood sugar go up. Are you going to take on a story line of any trips or your trip to the state fair this year. Every one needs to go to the Minnesota state fair at least once. I have not been for many years and do miss it. Take care. Irish
I got plaquenil toxicity in 2009 after less than 5 years of use and before the dosage guidelines changed. Under current guidelines, my prior dose was too high. Bummer.
The retina damage was discovered during routine monitoring. I did not notice any symptoms that would have otherwise caused me to go to the ophthalmologist. I stopped using plaquenil immediately and was monitored for damage progression for a year. While the damage shows up in pictures and the dot test, I don't notice it in my daily life except maybe trouble driving at night. That may be due to age though, as this all happened when I was 40 and eyes start to deteriorate in that way around that time anyway.
The condition rarely occurs, but it does happen which is unfortunate. The geezer John's Hopkins trained opth to whom I was referred for monitoring after diagnosis and an interstate move had never seen the condition during his 25+ years of practice. My current opth showed my textbook bullseye pictures to other doctors in her office as they had not seen it before, either.
Best of luck to you, OP. Hopefully your damage does not progress.