Hydroxychloroquine and Headaches: What Users Say

• Wil...
• Taken for 1 to 6 months
• December 16, 2019

For Rheumatoid Arthritis "I welcome the chance to comment on my personal experience with Hydroxychloroquine (generic). Please keep in mind that these comments are based on my experience only. My rheumatologist prescribed two 200 mg tablets per day. After two months, I discontinued the medication because I was experiencing a number of nasty side effects, which included: dizziness, disorientation (even in familiar places and times), extreme fatigue (slept 16 hours per day), periodic shortness of breath, loss of cognitive abilities, blurred vision, headaches, metallic taste in mouth, excessive itching (but not hives), little improvement of inflamed joints, insomnia, nausea, extreme intestinal disruption, forgetfulness, and overall lack of energy. I realize some with RA praise the drug, and I am happy it works for them. But I found it a nasty, quality-of-life inhibiting drug. Thanks for reading!"

• Anonymous
• November 10, 2019

Hydroxychloroquine for Rheumatoid Arthritis "Been on Plaquenil for 30 years for rheumatoid arthritis. I don’t know if I have side effects from this drug as they are intermittent. Itching - weird times, not consistent. Eye watering - constant. Headaches - hormonal, RA related. Always had thin hair - never fell out. No stomach issues ever. Get eyes checked 1x a year. My eye doctor puts me through an hour+ battery of tests (4?) and takes a picture of my eye every year (cool machine, don’t have to dilate). Blood work every three months to monitor kidneys. Starting to wonder if I need to increase because my shoulders are starting to lose range of motion and had bursitis a few weeks ago. Or maybe I need to increase prednisone (also 30 years - 5 mg once a day). Been off the anti-inflammatory diet though, will get back on it, too. Starting the gym on Tuesday. Stay healthy folks!"

• RA ...
• March 9, 2013

Hydroxychloroquine for Rheumatoid Arthritis "I have been taking Plaquenil for about 2 months. I started out with 200 mg/1x a day along with Prednisone to treat my RA, slowly tapering off the steroids. Now I am just on Plaquenil. I have to say that the pain is still there, especially in the morning and late evening. Sometimes it is difficult to fall asleep, but I gave it a 6 because it is nothing like before when I took no medication. Perhaps it works better for others? I still have the swelling and stiffness in the mornings, but, as I said, nothing like before. It also only gets a 6 because the headaches I get while taking it are debilitating. I sometimes wonder if the trade-off is worth it? They start about 30 minutes after taking it and last until I manage to fall asleep. Sigh."

• Eve...
• April 29, 2014

For Rheumatoid Arthritis "I was diagnosed with rheumatoid arthritis in June 2013 at 39 years old. The pain was unbearable and debilitating. I started taking hydroxychloroquine 200 mg twice a day, which didn't sit well in my stomach, I experienced extreme burning in the esophagus. Once I started using the brand name form of Plaquenil, I no longer experienced that side effect. I had bouts of loose stool, nausea, and headaches for a few months, but they have gone away. Plaquenil has done wonders for me. It does take a few months to really feel the benefits, but hang in there, it's worth the wait. My fingers don't feel like they are going to break off, I don't have pain all over my body, and hurray, no morning stiffness. I feel like a new woman."

• lus...
• September 25, 2012

Hydroxychloroquine for Rheumatoid Arthritis "I was diagnosed with rheumatoid arthritis in February 2012. Plaquenil has been the second medication we've tried. I've only taken it for 1 week and have a horrible rash on both arms and on the backs of my legs. It has caused diarrhea and headaches. I have stopped taking this medication and am currently waiting to see what medication we will try next."

• Dan...
• September 9, 2015

Hydroxychloroquine for Rheumatoid Arthritis "I had Lyme disease and a subsequent RA diagnosis. I have been on Plaquenil for 7 months: 200 mg 2 times a day and now 1 time a day. It has helped a great deal. I was also taking collagen and a few herbs for inflammation. I am doing much better and able to do a lot of things I thought I never would again. I have occasional stiffness, but it's hardly an issue. On the downside, I do have bad nightmares-not all the time, but they are something I am not happy about. Anecdotally, they may be correlated to alcohol. I occasionally get nausea and headaches as well, but the headaches are mild and only once a week or so. Fingers crossed that the side effects diminish and that this drug keeps on keeping on. I am 55. Best to you all."

• Anonymous
• December 24, 2011

Hydroxychloroquine for Lupus "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 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 experienced bad headaches and hair loss."

• mus...
• Taken for less than 1 month
• December 29, 2013

Hydroxychloroquine for Undifferentiated Connective Tissue Disease "I just started this medicine a few weeks ago. My rheumatologist told me that it could take up to 12 weeks to work. I have had stomach cramps, diarrhea, headaches, and worsening of symptoms in my joints. I am not going to give up on this. I don't really want to rate it because I have not been on it long enough. I wanted to comment so that others could possibly get some encouragement to hang in there if possible."

• Ban...
• Taken for 1 to 6 months
• February 26, 2018

For Sjogren's Syndrome "I take this for Sjögren's syndrome. I have been on it for months now and haven't noticed any improvement in my symptoms. In fact, I seem to be getting worse. I also have side effects from this drug, such as ringing in my ears, frequent headaches, and increased memory loss. Everybody is different, but I wouldn't recommend hydroxychloroquine!"

• Anonymous
• November 13, 2012

For Rheumatoid Arthritis "This is the fourth medication I have tried for rheumatoid arthritis. I took it for one week and developed headaches and severe diarrhea. I had blood in my stool. I have had similar experiences with other medications."

• Mog...
• November 12, 2017

For Sjogren's Syndrome "I had a terrible 18 months of cramps, muscle aches and pains, crepitus, and headaches with extreme debilitating fatigue before finally getting a diagnosis of Sjögren's (before that they thought I had fibromyalgia). I would recommend Plaquenil, as it has helped to give me back a quality of life. Giving up wheat and gluten after allergy testing has helped enormously, and there is a link between autoimmune conditions and wheat allergy/intolerance, so I would recommend anyone suffering as I was to get tested. I no longer have any pain, and the fatigue has improved a lot, but it did take about 4 months to help, so please bear that in mind. I am also taking a water-based probiotic daily, and that has helped me too."

• GCa...
• Taken for less than 1 month
• August 23, 2016

For Rheumatoid Arthritis "Plaquenil was the first RA medication I was put on. It did not go well. I was on it for a total of 3.5 weeks, and during that time, I have never been so sick in my life. The nausea got worse the longer I was on it. I developed severe vomiting at about two weeks on it. I was debilitatingly exhausted all the time. I lost over 10 pounds in this short time because I couldn't eat and was getting so violently ill. It also gave me a horrible headache that lasted from day 1 until my rheumatologist discontinued it. After I stopped taking it, the side effects cleared up in about a week. Now that I am off it, I can tell it was helping the RA pain and swelling, however, the side effects were just too much for me."

• Dee...
• Taken for 1 to 2 years
• January 18, 2015

For Lupus "It's been a year and a half on hydroxychloroquine at the high dose at first, which gave me brown urine, headache, and no appetite. Doc cut the dose in half, and I was okay, except for an irritated tummy. I asked if I could again cut the dose in half, which worked out to like 100 mg a day. I felt like my old self, but the doc thought it was too low a dose. I turned down prednisone altogether and waited out the hydroxychloroquine. I saw the rheumatology doc the other day and took a list of concerns, he said not related to lupus...(burning skin in the private area, tummy issues, brain fog, dry mouth at the front, and a few others). I had a culture on urine and nothing...but bilirubin in urine and trace ketones too, so I'm gonna double-check that out. Rheumatology thinks I should go off this."

• aly...
• Taken for 1 to 6 months
• January 5, 2017

For Rheumatoid Arthritis "A wonder drug to me when I first took it. Almost all the pain in hand joints stopped within a week - after 10-15 years of continuous pain, which I had just ignored, but couldn't now face going back to. I'm still almost entirely pain-free in the joints - just a shadow of it in the evening when I'm tired. I do have side effects though. Terrible constipation and trapped wind, getting worse at present and making me feel sore inside. Also headaches and irritability in the evening, though these are worth putting up with for the increased clarity of thought in the daytime. The 'horrible' feeling someone talked of - I had just a week of it. Like another body, full of pain, just behind the new one, alternating like an alternating current..."

• Cho...
• August 5, 2016

For Rheumatoid Arthritis "I was diagnosed with RA when I was 30 years old. I'm 37 now. My rheumatologist started me out on Methotrexate, which put me in the hospital for severe flu-like symptoms for an extended period of time. I have just started Hydroxychloroquine, I am on 200 mg once a day and have noticed it leaves me feeling out of sorts, and I often have headaches along with nausea despite taking it with meals. It has caused me to miss work on several occasions. I'm hoping that with time some of the side effects will subside, and I'll be able to enjoy a better quality of life."

• Jay...
• Taken for less than 1 month
• May 30, 2019

For Undifferentiated Connective Tissue Disease "I took this medication one time for UCTD (undifferentiated connective tissue disorder), and the side effects are horrible. Nauseous, and no appetite for the whole day. I fell asleep for 3 hours, and I woke up with a terrible headache, and the aching in my hands and body is worse. Prior to this, I started a gluten-free diet with vegetables and fruits and herbal remedies, and I was actually able to start working out in the gym. I still have pain, but not like I experienced on this medication. By reading the experience of others on here, I see how much they improved, so I guess some people do well on it and some don’t."

• Vit...
• June 16, 2017

For Undifferentiated Connective Tissue Disease "I've been on Plaquenil since March 2017 for a recent diagnosis of Mixed Connective Tissue Disease. Prior to that, 13 years of seeing specialists for body aches, total body inflammation/swelling, joint pain, and stiffness - the majority in neck/shoulders/entire back. Body aches increased often after eating. Very painful headaches during the day and at night, headlights of other cars were unbearable. Days just stuck in bed. One day of Plaquenil changed my life - it gave me more energy, eliminated the headaches, subsided inflammation/swelling, nearly non-existent pain! Three months later, still going strong. But being in the sun does bring the pain back. Otherwise, did not experience any adverse effects many mention."

• crl...
• Taken for less than 1 month
• February 17, 2023

For Rheumatoid Arthritis "Mentioned prior to starting to the doctor concerns about possible side effects causing anxiety and agitation, only to be told that it is rare. Well, a few hours after the first dose, 200 mg, teeth clenching, mouth twitching, and feeling very anxious, then came a red, itchy rash on my abdomen that appeared then vanished. Later in the day, headache, foot tendon pain, then difficulty sleeping. Next day, same thing all over again but worse, with a nervous response to a stressful encounter and a bigger rash. That was it for me. Doctor agreed that I should stop."

• Rwr...
• Taken for 1 to 6 months
• July 13, 2021

For Rheumatoid Arthritis "I started this drug six weeks ago. In week six, my side effects appeared. I had been so hopeful. Thought I was doing well with no side effects. Then they came. Horrible rash, anxiety, mood changes, no sleep, headache, and nausea. I had to stop the medication. I knew of the side effects that could happen, but I figured they would have happened right away. Not so. Now I find out they happen as the slow-acting medicine begins working. Even in week six, it didn’t relieve any of my pain or symptoms. I’m so disappointed I had to stop this medicine. For those who tolerate it and it works for you, I’m so happy you have found something that works. Blessings."

• Lil...
• Taken for 1 to 6 months
• October 20, 2021

"This was prescribed for scleroderma. After 6 months of daily vomiting, severe stomach pain, excessive fatigue, headaches, brain fog, waking in the night in agony from swollen hands, feeling like my skin was on 'fire,' and experiencing visual disturbance to the point I couldn't focus on written words, I stopped taking this medication against medical advice. Wow! I realize just how ill the medication made me (to the point of feeling life was not worth continuing). Hydroxychloroquine never made any impact on the pain I was in or fully cleared the dry skin. Since stopping the medication 6 months ago, the pain and swelling have significantly reduced, my breathing is better, I have more energy, and as I am no longer vomiting daily, I have regained the weight I lost (I lost over 1/5 of my body weight while on this medication, becoming quite underweight). I can cope far better with some dry skin and aching joints than I could when I was also experiencing the side effects of hydroxychloroquine as well!"

• Che...
• Taken for 1 to 6 months
• January 22, 2020

For Rheumatoid Arthritis "Been taking Plaquenil for three months. Severe headaches and loose stool, itching along with internal tremors."

• WEA...
• Taken for 1 to 6 months
• January 30, 2019

For Sjogren's Syndrome "From my experience, this should be taken off the market ASAP, as it causes bad brain fog and bad headaches."

• Bli...
• Taken for less than 1 month
• October 30, 2019

For Rheumatoid Arthritis "I started on this a few days ago and have terrible nausea and headaches. I feel panicky. Do side effects wear off, and how long does it take? I take 200 mg one day, then 400 mg the next."

• Sie...
• Taken for less than 1 month
• August 16, 2022

For Rheumatoid Arthritis "Headache, dizzy, slight vision issue, overall not feeling good-overall symptoms worse, not improving."