Comment from: EnGee35-44on Treatment for 1-2 years Published: November 15

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.

Related Reading: plaquenil | fatigue

Comment from: 45-54on Treatment for 5-10 years Published: January 01

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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Comment from: tj55-64on Treatment for less than 1 month Published: March 18

My RA Dr. prescribed Plaquenil just over a month ago. I somewhat reluctantly started taking it a week later after researching the side affects. I was to take 200mg/2xday.I chose to take 200mg/day instead due to the worst side affect regarding retina damage. In 3 wks. time I had noticed a marked improvement in my pain level and was able to start doing things again. Then came the hives. Covered most of my body. Stopped taking the drug and just over a week later, I'm still dealing with the tail end of the hives. They've just about cleared up. Sometimes you have to be your own doctor; I can't imagine what would have happened at 400mg/day! Time to try the next Rx.......

Related Reading: plaquenil | hives

Comment from: AmandaFromNewOrleans45-54on Treatment for 10+ years Published: January 12

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 — ) 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: I am not paid to recommended it!

Related Reading: plaquenil | vitamins | blindness

Comment from: Saline 25-34on Treatment for 1-6 months Published: March 19

I have mild RA started to take this medication 5 months ago, pain has been reduced significantly, morning stiffness has been reduced too.

Published: October 03

I had a very serious reaction to this drug, my entire body broke out in hives, then turned purple and I looked like a giant bruise and then it peeled, there was not a spot on my body that did not peel. I retained water, my legs and arms swelled causing major blisters that left permanent scars on my legs, I also had hair loss. I missed 3 weeks of work. HORRIBLE DRUG

Related Reading: hives | scars | hair loss

Comment from: 45-54on Treatment for 1-2 years Published: April 22

too many side effects.

Comment from: Cora45-54on Treatment for 1-6 months Published: January 15

This medication is helping to alleviate the inflamation and pain. My doctor prescribed that I take it in the morning after breakfast but it made me too naueseous and made my stomach hurt because there was not enough food in my system. I switched to taking it after dinner and my experiance is much better. Also, it has cleared up scabs that I had on my arms that would not heal for years. So far so good and I do not have any hair loss but I have only been on it for one month.

Related Reading: hair loss

Comment from: 25-34 Published: September 03

I needed a different dosage, but this drug only comes in one dosage. This made it difficult to get the correct amount of medicine in my system.

Comment from: sicklady45-54on Treatment for less than 1 month Published: January 02

severe allergic reaction

Comment from: Methotrexate 200 mgozqule65-71on Treatment for 1-2 years Published: July 21

It has helped with joint aches but I hacve a problem with my Eyes about every 2 to 3 weeks. They get Red, Itches, cant stand sunlight, burns and eye DR said its allergy related.

Related Reading: burns | allergy

Comment from: Fang45-54on Treatment for less than 1 month Published: September 14

I started taking this about 3 weeks ago to alleviate joint pain related to Lyme disease, and to potentiate the doxycycline in treatment of Lyme. It has worked very well on both counts. I'm on a low dose compared to what could be taken (only 200 mg 1x per day) and it started taking effect on the joint pain right away. This is the most pain free I've been in years. Very few side effects for me. Definitely need to take it with food to minimize stomach upset.

Related Reading: lyme disease | doxycycline

Comment from: stacieseattle35-44on Treatment for 10+ years Published: June 19

This medication has given me a normal life for the past 11 years. How do I know? I was just recently taken off the drug and have become even sicker than before I was diagnosed. My quality of life went from an 8 to a 2 in just a couple of months. I highly recommend this medication. It has truly been a miracle pill for me. I'm back on it and waiting the 3-4 months it takes to work (at least that's how long it took the first time). I have a great opthamologist who has assured me he will catch retinal damage before I will ever notice a change in my vision, so as far as I'm concerned, I want to stay on Plaquenil until I'm forced off it.

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Comment from: 35-44on Treatment for 1-6 months Published: January 20

The first two weeks of taking 400mg of this drug was hell. Very tired, nausea, threw me in to a "flare" (I have mixed connective tissue disease, with symptoms close to that of lupus.) After that time though, it has gotten better, and pain in my upper extremities has become better! I've been on it for 1 month.

Comment from: (None)55-64on Treatment for 1-6 months Published: August 21

I have been on this medication for about 3 months now! But I still have stiffness in my fingers and joints, and it takes it a while for the medication to kick in!

Comment from: Celeste25-34on Treatment for 1-6 months Published: July 17

Plaquenil is the devil! Worked well 1st 2 mts. After that I had issues with my vision, felt waves of nervousness, and extreme anxiety where I started to question my sanity. Hallucinated, broke out in rashes and crying spells. It was the worst 2 months of these side effects I've ever had in my life! Got off of it and I feel back to normal. My Lupus is mild so I'm going the holistic route. Plant based diet, acupuncture, juicing.. I feel good and will take minor aches and fatigue any day than being on plaquenil. Beware! Do your research before accepting a lab created Rx from Dr.s.

Related Reading: plaquenil | anxiety | lupus


Lupus is an infection. See Answer
Comment from: Pillmduser19-24on Treatment for 2-5 years Published: March 01

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Comment from: JillN.45-54on Treatment for 2-5 years Published: December 26

I was diagnosed with Tumid Lupus which causes raised red ulcer looking rash mainly on my face but can be anywhere on the body. it is cutaneous (not systemic). I also have osteoarthritis. I started on Plaquenil in 2015 (200 mg) then increased to 400 mg after 3 months. It took many months for the ulcer like spots to go away but the drug works. In January 2018, I no longer had insurance so I dropped back down to 200 mg. It also took away most of my OA pain in my knees and hands. The only side effect taking the drug for me was severe burning mouth syndrome, ringing in the ears and an overall dryness. I am concerned with the drug affecting my vision. I stopped taking the drug because of the cost of am eye exam and office visits and lack of insurance. I am not in a flair. After 3 months without taking the drug, my burning mouth is almost gone and am so happy. My OA has now come to life which I had forgotten how painful it is. I wasnâ??t aware how much plaquenil help with those symptoms. I am searching for a new drug that will help with OA but not cause burning mouth syndrome and just maybe block the Tumid Lupus. I heard Cymbalta may help with OA.

Related Reading: lupus | osteoarthritis | plaquenil

Comment from: Worried mom13-18on Treatment for 6 months to - 1 year Published: December 11

My Daughter was diagnosed with Juvenile Psoriatic Arthritis She was perscribed plaquenil For it and helped the pain and swelling in her body Tremendously but it has suppressed her immune system which has caused her to get a bunch of secondary infections other than that we're over all pretty satisfied

Related Reading: arthritis | plaquenil

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Medical Editor: John P. Cunha, DO, FACOEP

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