Reviewer: AmandaFromNewOrleans, 45-54 Female on Treatment for 10 years or more (Patient)

Comment:
My plaquenil post Plaquenil can make you completely blind! *Legitimate looking vitamins I take to help remediate it I took Plaquenil for over 13 years and it caused me (and 6 in every 1000 patients, new research shows) to have toxic maculopathy it caused. *re: even if you quit taking the drug, it can continue to damage the eye until blindness occurs. If you are taking it, make sure ... Show Full Comment

Comment:
My plaquenil post Plaquenil can make you completely blind! *Legitimate looking vitamins I take to help remediate it I took Plaquenil for over 13 years and it caused me (and 6 in every 1000 patients, new research shows) to have toxic maculopathy it caused. *re: even if you quit taking the drug, it can continue to damage the eye until blindness occurs. If you are taking it, make sure your physician is using the NEW guidelines on treatment ==I think it is no more than 5 milligrams per kilogram (For example just heard an example on this video if under 140 pounds you shouldn’t be on 400 miligrams —https://www.youtube.com/watch?v=D35uZA-vjPY ) Friends: If you have ANY changes in your vision, friends, head to a retinal specialist--1 test I had an angiogram done. My first retina specialist said i could be blind in 20 years without telling me the odds of that happening or giving me hope My 2nd retina specialist doctor thinks that, since I have had very little deterioration since stopping the drug 18 months ago, I may be one of the fortunate ones that only have some damage. All I thought Plaquenil could do to my eyes was to cause them to lose color vision. I never truly understand what the Humphrey Visual Field Test was (and it is very rudimentary, my current retina specialist doctor said. If you have ANY changes on this test, be accessed by to a retinal specialist It did work well to make my Lupus/Scleroderma is more symptomatic Are there any support groups or experimental therapies for toxic maculopathy? *I am looking for experimental treatments or for information sharing on this! +++++++++++++++ I found EyePromise Restore Vitamins that I take for retina health== those particular vitamins seems highly rated on all websites and that my retina specialist recommends —they are backed by 2 studies cited on their website called the Ares studies *Website for vitamins: www.eyepromise.com I am not paid to recommended it!
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Reviewer: 45-54 Male on Treatment for 5 to less than 10 years (Patient)

Comment:
Please please please don't be intimidated by the Internet stories of problems or side effects. This drug saved my life! Yes, there are some GI issues in the first few weeks and you need to be patient. I had life threatening issues that sent me to the ER - twice - and each time, Plaquenil brought me back from the brink and set me on an even keel. Please be patient and try to tough out the GI is ... Show Full Comment

Comment:
Please please please don't be intimidated by the Internet stories of problems or side effects. This drug saved my life! Yes, there are some GI issues in the first few weeks and you need to be patient. I had life threatening issues that sent me to the ER - twice - and each time, Plaquenil brought me back from the brink and set me on an even keel. Please be patient and try to tough out the GI issues and give it 2-3 months. This drug can save your life if you give it a chance.
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Reviewer: EnGee, 35-44 Female on Treatment for 1 to less than 2 years (Patient)

Comment:
My rhematologist placed me on plaquenil in winter of 2015 after experiencing a flare (40% of my hair fell out in 5 weeks and I was ALWAYS exhausted. Even if I slept it was unbearable). I've been on it a year, reluctantly. I do not want to have to be maintained on any chemicals or pills. Now that I've been on it a year the only thing that has improved is fatigue. But I"m not sure if it ... Show Full Comment

Comment:
My rhematologist placed me on plaquenil in winter of 2015 after experiencing a flare (40% of my hair fell out in 5 weeks and I was ALWAYS exhausted. Even if I slept it was unbearable). I've been on it a year, reluctantly. I do not want to have to be maintained on any chemicals or pills. Now that I've been on it a year the only thing that has improved is fatigue. But I"m not sure if it's because the flare passed or because of plaquenil. I still get joint, muscle and back pain so to me it hasn't improved the pain part of it.
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Reviewer: RK, 55-64 Male on Treatment for 1 to 6 months (Patient)

Comment:
Have been on this medication for 5 weeks. I believe it has reduced the severity of my symptoms by about half. I am concerned about the eye issues, but will keep a close watch going forward.

Comment:
Have been on this medication for 5 weeks. I believe it has reduced the severity of my symptoms by about half. I am concerned about the eye issues, but will keep a close watch going forward.
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Reviewer: Aka sonny, 65-74 on Treatment for 1 to 6 months (Patient)

Comment:
I started at 700mg daily which I think puts me into an overdose situation. I experienced daily gastrointestinal problems. I informed doctor and he said to reduce to 600mg daily but the problem persisted. Now down to 400mg daily. Gastro problems not so severe now. My SLE symptoms were minor (Sjogren's symptoms primarily) and Prednisone actually solved it after a month. Now off the Prednis ... Show Full Comment

Comment:
I started at 700mg daily which I think puts me into an overdose situation. I experienced daily gastrointestinal problems. I informed doctor and he said to reduce to 600mg daily but the problem persisted. Now down to 400mg daily. Gastro problems not so severe now. My SLE symptoms were minor (Sjogren's symptoms primarily) and Prednisone actually solved it after a month. Now off the Prednisone. Recent blood tests, however, have shown an increase in creatinine levels (1.4 up from 1.0) for the first time (also have well-controlled Type II Diabetes). Can't seem to find out if the Plaquenil is the culprit. Still working on that. No other real symptoms of Lupus (also have Sjogren's and APL Syndromes). I really don't know if this drug is working or not since my symptoms leaned more towards a problem with Sjogren's. Frankly, this drug scare me a little...especially with the possibility of retina problems (and even worse worries at 700mg). I've been on Plaquenil for about 2-3 months. No joint pain, no rashes, just a family history, positive ANA and antibody presence for all three. I'll keep taking 400mg daily until the Rheumy says not to but I really don't know if its needed.
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