Plaquenil for Lupus User Reviews
Plaquenil has an average rating of 6.6 out of 10 from a total of 30 reviews for the treatment of Lupus. 50% of reviewers reported a positive experience, while 23% reported a negative experience.
Reviews for Plaquenil
- chell...
- October 5, 2014
"I am a RN and have been diagnosed with undifferentiated connective tissue disorder. I was initially very hesitant to start medication due to the side effects. I have been on the medicine for three years. I have had increased joint mobility and decreased swelling. I do have my eyes examined every six months. Glad I weighed my options and gave it a try."
- Ashley
- Taken for less than 1 month
- January 15, 2020
"I've been taking Plaquenil for 6 days now and I already notice a difference in my SLE. I almost feel normal. Before I struggled with fatigue and pain. Since its a mild stimulant it helps with my energy and my body is feeling so much better. I can't wait for a month to be up to see the results more clearly. I'll update then."
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- osborne
- Taken for 1 to 2 years
- October 29, 2014
"I would recommend this to anyone. I was put on Plaquenil in April of 2012 for Lupus symptoms, constant pain( mostly in my legs) extreme fatigue and overall ill feeling. Within 2 months of taking Plaquenil the pain and fatigue had subsided, not completely but has greatly improved over the last year and half & my health and immune system has also improved and I went from being sick ALL the time to very rarely sick. It has been a Godsend for me. I wouldn't advise taking the medicine on an empty stomach it will make you sick & nauseous all day long."
- LarryF
- June 11, 2015
"I first went on Plaquenil in 2004, due to unbearable finger and wrist joint pain for 5 months, which was diagnosed as Lupus (after a sky-high ANA test and some other tests and diagnoses). I was told it would take 3-ish weeks to kick in, and it did, right on schedule. Almost overnight, I went from not able to hold a soda can or open a door to being 100 % pain free. I was on Plaquenil for 4 years, during which time I was in complete remission, so in 2008 I discontinued it. In 2015 Lupus reared its ugly head again, this time with Pleurisy. Got back on Plaquenil and after the requisite waiting time, it got the problem under control (not 100%; maybe 50 %). I love Plaquenil but my advice to others is to be very patient and give it time to work."
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- Mrs...
- February 19, 2012
"For mild cases of lupus (meaning no organ involvement) I would say this works perfectly fine. Reduces fatigue and joint pain from a 10 to about a 2 depending on weather conditions. If you are active and maintain a healthy diet I would say fatigue and pain are at a nil while taking Plaquenil. It takes maybe a few months to get the dosages correct with your level of pain and fatigue."
- amand...
- January 13, 2019
"Plaquenil Users Beware: Drug can make you completely blind: re: toxic maculopathy I took Plaquenil for over 13 years. One retina specialist said because of the toxic maculopathy it caused. *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 If you have ANY changes in your vision, friends, head to a retinal specialist--1 test I had an angiogram done. Are there any support groups or experimental therapies for toxic maculopathy? I found EyePromise Restore Vitamins that I take for retina health my Dr. says will help "
- Cass
- Taken for less than 1 month
- August 27, 2017
"I'm in Australia , only just started this medication a week ago but I feel a less fatigued already. I was stuck in bed most days, but now I can go longer without needing to go to bed or feeling like I'm going to collapse. I haven't noticed any bad side effects yet either which is good! As I get nauseated and dizzy on meds easily and haven't found that to be the case! I just wanted to point out that some people hear a lot of bad things that aren't necessarily reported or true. Like I noticed a woman on here said she needs to stop taking it because of the tinnitus side effect means she might go deaf. But deafness hasn't been reported, just tinnitus as a side effect whilst taking it. Don't be so afraid if it's going to give u your life back"
- Lou...
- Taken for 1 to 2 years
- February 2, 2020
"At first it made me very sick nauseous all day but figured out for me I could take it with peanut butter it coated my stomach enough to make me not nauseous. Took about 3 months to start helping joint pain and it has continued to help more the longer I’m on it, I still get joint pain flares here and there but much shorter time frames."
- a...
- March 6, 2008
"This drug gave me back my life. I suffered with chronic cyclical arthritis that felt like it was in every joint. The fatigue was devastating. Even if I slept for hours I still woke up feeling no better. I was scared to take this drug but eventually I had to do something. Thankfully, I have no side effects. I only have very occasional arthritis and am no longer tired. It has given me back my life. I do have my eyes checked 2x/yr."
- deziner
- June 5, 2008
"I have been on this medication since February 2008. I have more energy and less fatigue. I still have my days, but this medication is a God send. Initially, my hair began to thin, but with supplements and proper hydration for my hair, it has levelled and is beginning to thicken again. If you are taking this medicine and have some of the side effects, please give it some time. I am glad I did."
- small...
- May 28, 2014
"I have been on this medication for about 12 years now. It seems to work very well but as the years have gone on it doesn't work quite as well as it used to. That's why I only rate it at an 8. There was a time when my insurance was messed up, and I didn't have the money to pay for my medications. I could definitely tell the difference when I was not on this medicine. I would definitely recommend it."
- Not...
- Taken for less than 1 month
- September 20, 2019
"Started taking Plaquenil 5 days ago for bad butterfly rash caused by dermal lupus. I’m extremely dizzy, bad stomach pain, ringing in the ears, etc... I’ll deal with the rash this is way to harsh. This is why pharma scares me so much. In bed on beautiful sunny day, can’t even walk my dogs so dizzy."
- Mel
- Taken for 1 to 6 months
- July 22, 2019
"Several years ago took Plaquenil for over two years, took about 6 months before it was effective. I have now restarted again this time it has become effective in about 10 weeks, no measurable side effects and less pain...."
- CTT
- October 13, 2015
"I started this med as I have both RA and Systemic Lupus. It did nothing for me and we added Methotrexate, still no benefit. Added Enbrel, no better. My eyesight was beginning to fail so I stopped all of them. My weight ballooned up by 25lbs!! I have found no mainline meds to help and had to turn to Traditional Chinese Medicine for relief. Works great for me. I am still hoping to find something in the regular vein of meds to help and not hurt me. My insurance will not cover the help of the Traditional Chinese Medicine that is helping. What's up with that?"
- PBHi
- Taken for 2 to 5 years
- May 29, 2014
"I have been taking 200mg of Plaquenil daily for 2yrs now. I still have many days a wk when my entire body hurts. My eye doctor cautioned me not to go to a higher dose for the protection of my eyes. Recently, my daughter noticed a film over half of one eye, which I could not see and my vision is generally not as clear. May not be the right medicine for me."
- Tjmoney
- Taken for 2 to 5 years
- April 28, 2019
"I am African-American 55 years of age. I developed sores on my leg, hearing loss problems, heart rate increased, dizziness all the time, balance problems while walking, mouth sores, weakness of lower legs I had to use mobile chair I became so weak, made quality of life worst."
- Rosin...
- July 23, 2014
"This medication worked great for me except for some stomach upset which was I tolerating because I wanted to stay off Prednisone. However, three weeks into taking the medication, I developed an allergy to it and broke out in hives all over my body. So I had to discontinue, sadly. Very sorry not to be able to take this medication as it seems the best one for controlling my Lupus with the least side effects."
- Joanna
- Taken for 5 to 10 years
- December 29, 2019
"I have been taking for five years. My ALE is on the mild to moderate side of things thank goodness. I regularly get my vision screened and so far so good. My arthritis has gotten much worse and is affecting almost all of my small joints in hands and feet. The only thing I have noticed has been a gradual darkening of my skin. Which would be okay if it was an even darkening but alas, only in blotches. Can't really say if Plaq helps me and am considering discontinuing it."
- Barb-...
- Taken for 1 to 6 months
- January 23, 2016
"I had only had a mild SLE flare about 30 years ago. I had plenty of the discoid lupus symptoms, but they were easily controlled with avoiding the sun and using sunscreens,especially in the last 20 years. I developed another auto-immune problem about 15 years ago.(gluten intolerance or or possible CD.) I ate the "gluten-free" Cheerios when they hit the shelves about 6 months ago, and almost killed myself, as they were not gluten free. This touched off a SLE flare of unbelievable proportions! Practically every joint in my body was hurting SO badly,and I had fever and fatigue and did not respond to NSAIDs. Placquenil has been my lifesaver! Adhering to an anti-inflammatory diet for a month helped, also. The price-worth it."
- Anonymous
- December 24, 2011
"I was diagnosed with Discoid lupus in 2009 and I began using Plaquenil once I stopped breastfeeding. Initially, the only difference I noticed was my hair stopped falling out. After taking Plaquenil for a less than a year my face and neck started turning black. My dermatologist is convinced that Plaquenil is the culprit and just recently confirmed it. Between my rheumatologist and dermatologist they're trying to find the right medicine that will work. I've been using bleaching creams for about 9 months and they haven't worked well. I tried to come off Plaquenil but I experience bad headaches and hair loss."
- Jesse
- November 16, 2010
"The only reason I gave Plaquenil a 9 instead of a 10 is because I still need Imuran as well. Plaquenil is a great medicine but it's important to have your eyes examined every 6-12 months to check for a RARE side effect of eye damage."
- emily...
- Taken for 2 to 5 years
- January 7, 2017
"I was eventually diagnosed with SLE in 2012, 3 months after my first (& worst) flare. I took prednisone for a week, & started taking 200mg plaquenil & 2400mg ibuprofen daily, & 50-150mg tramadol as needed for pain. In my experience, the prednisone helped to reduce the excruciating, debilitating joint pain by calming the inflammation, & plaqenil & ibuprofen keep it at bay...for the most part. My rheumatologist took me off plaquenil 2 years ago; I still take 400 mg of ibuprofen 2X/week. I still get flares once or twice a year, but they are not as bad...6, as opposed to a 10 , on the pain scale. Tinnitus started a few weeks after I started plaquenil & I still have it. It's vastly annoying, but at least it doesn't hurt! best of luck to all!"
- Bell
- Taken for less than 1 month
- March 22, 2020
"I started taking plaquenl about 2 weeks ago for SLE and if I had been drinking around the time I’m suppose to take my pill I just wouldn’t take it and I missed about 2 days and this has been my worst flare up. No side effects. I’m moody but that’s just a normal 21 yr old female. Don’t be hesitant to try this because anything is better than the pain of chilblains and joint pain. Will update in a few months."
- Raye
- Taken for 2 to 5 years
- November 16, 2020
"I took Plaquenil for Lupus for 4 years. It causes eye pain, chest pain, stomach pain and gave my face a melasma appearance that is irreversible. It did NOT help with RA or Lupus symptoms at all, but my doctor wants me to stay on it or see a different doctor."
Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.
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"I've been taking this medicine for 4 days. I have not experienced any negative side effects yet. No nausea or jittery feelings like others I've read about. Since starting this medicine I've noticed I've slept like a rock. No waking up at all and no problems falling asleep. I just felt I should share this observation since I was terrified to start after reading all these horror stories. Not everyone is negatively affected."