Hydroxychloroquine and Fatigue: 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!"

• 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!"

• Ohs...
• Taken for 1 to 6 months
• November 16, 2014

Hydroxychloroquine for Sjogren's Syndrome "I was diagnosed with Sjogren's Syndrome 3 months ago. I also have rheumatoid arthritis and Hashimoto's. My rheumatologist prescribed Plaquenil in hopes to control all 3 conditions. I would say that Plaquenil has basically given me my life back. I suffer from debilitating joint pain, fatigue, brain fog, and extreme anxiety. I had to quit working because as a high school teacher, brain fog and anxiety are probably 2 of the worst things you should be dealing with when dealing with teenagers. I would give Plaquenil a 10, but I haven't been on it long enough to see the full effects. I continue to have more energy every day, I'm back to walking as exercise again, and my joint pain is very well controlled."

• Ash...
• Taken for less than 1 month
• January 15, 2020

Hydroxychloroquine for Lupus "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 it's 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."

• Lum...
• June 3, 2011

Hydroxychloroquine for Sjogren's Syndrome "When I was diagnosed with Sjogren's, it was advised I start taking Plaquenil. I avoided it for months because I felt I had enough symptoms already without any side effects from medication. However, it became quickly apparent that the fatigue and pain were not going to allow me to continue working. Being in my twenties at the time, this was not an option. So I gave in and gave the Rheumatologist my consent. Six years later, I have no complaints. I work full time and on the occasions that I forget to take my Plaquenil for a day or two, I notice a substantial difference: pain, unbearable fatigue, etc., and overall being unable to find enough energy to live my daily life. I am completely derailed without it."

• Dar...
• June 6, 2017

Hydroxychloroquine for Rheumatoid Arthritis "Haven't taken this. Just wanted to read some feedback. I was on methotrexate, but stopped because it gave me chills, fatigue, and shortness of breath. I even fainted at work. The doctor suggested Plaquenil as a possible alternative, but after reading some of the comments, I don't think so. This is really frustrating and sad. The FDA should NOT be approving these crappy drugs which can cause worse problems than the one you have. I honestly don't know what to do, let the RA turn me into a cripple or take my chances with one of these death drugs?"

• Mrs...
• February 19, 2012

Hydroxychloroquine for Lupus "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."

• Chr...
• Taken for 2 to 5 years
• January 24, 2019

For Sjogren's Syndrome "I have taken 200 mg since 2016, and it definitely helps with fatigue and joint pain. However, I have noticed that when women are given 400 mg, they tend to have problems (including my daughter, who had lupus), but when she went down to 200 mg, then they disappeared. I think doctors are overprescribing the amount, and they should start out with 200 mg, and then after 6 months (the length of time it takes to fully work), if there is no difference, then a 100 mg increase (half a pill) added should be enough."

• Mis...
• October 7, 2018

For Sjogren's Syndrome "I was on 400 mg daily for my primary Sjögren's syndrome (pSS). It did help with some symptoms, but I was experiencing severe fatigue, muscle pain, and weakness; my rheumatologist said it was from my pSS and fibromyalgia. I had severe tinnitus, ear pain, and fullness. Decreased mental wellness, suicidal ideation, severe anxiety, and brain fog. I was on it for one year. I had horrible stabbing pains and electric shocks through my body, which sometimes made me scream. On the website, it said these side effects may be rare, but to discuss it with my doctor. My rheumatologist told me I could not stop this medication and that it wouldn't cause this problem, and I need to stop doing research on the internet. So I cut my dose in half. After six months, I was feeling better, so I stopped the medication completely. I found a new rheumatologist who confirmed that these are side effects, though not as frequent as others. I feel much better after being off of it. Some of my pSS symptoms have come back, but I feel nowhere near as bad as I did when I was on hydroxychloroquine."

• Amb...
• Taken for 2 to 5 years
• March 23, 2018

Hydroxychloroquine for Rheumatoid Arthritis "I started on Plaquenil for psoriatic arthritis in 2015 (200 mg twice daily). I didn’t feel too bad, but a huge bout of stress made my symptoms worse. I then started methotrexate in addition to Plaquenil. My rheumatologist suggested once daily Plaquenil, and that seemed okay. After a while, he said I could stop it as he was not sure if it was working. I tapered off the dose, and I slowly began feeling dreadful. The fatigue was awful, and I had weird signs akin to severe fibro. I then started back on twice daily Plaquenil. Within two weeks, I began to feel more human, and six months later, the fatigue is greatly improved. The small joints in my hands and my wrists are less sore, still painful but improved. I can do more now and feel like doing more. I still have some bad fatigue days, and the rheumatologist is still talking about biologicals, but for the moment, I’m happy to see how I go. None of these drugs are perfect, but at this stage, Plaquenil is really helping me."

• Ang...
• Taken for 5 to 10 years
• May 1, 2019

Hydroxychloroquine for Undifferentiated Connective Tissue Disease "I have been taking 200 mg of Plaquenil twice a day for 10 years. I get my vision checked every 6 months. I have had some thinning of my hair and can be nauseated in the morning if I don’t eat, but these are minor side effects compared to the symptoms it is treating. Switched to a new rheumatologist (mine retired), and the first thing he did was start weaning me off Plaquenil, saying I’ve been on it too long. I’m down to one pill once a day and absolutely miserable. I’m easily fatigued, achy, and feel exhausted. Started going to bed earlier and earlier but not feeling rested. Don’t want to get out of bed. Now I’m depressed because I felt great on the drug he says I can’t have."

• che...
• Taken for 5 to 10 years
• July 13, 2022

Hydroxychloroquine for Rheumatoid Arthritis "I thought it might be helping, I thought I tolerated it well because my eyes were okay. I was wrong. My heart rate went up a couple of years into taking it. Doctors blamed pain, then fatigue got worse to the point that I lived in my recliner. Then I developed more problems that slowly got worse: dizziness, extreme fatigue to the point that I couldn't concentrate on basic tasks, racing heart and near fainting, uncontrollable sinus infections, daily migraines, and my skin was all messed up with rashes and rosacea. I started dropping weight fast, food went right through me. The heart had problems not caused by the heart, the gut had problems not caused by the gut. Finally, the blood doctor's tests showed hemolytic anemia was bad, I was reacting to the Plaquenil in other ways too. Three months off and I'm near recovered. Watch that stuff!! Eight years, GONE, I was near death with doctors blaming RA and misdiagnosing as other things!"

• Bar...
• Taken for 1 to 6 months
• January 23, 2016

Hydroxychloroquine for Lupus "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 autoimmune problem about 15 years ago (gluten intolerance 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. Plaquenil has been my lifesaver! Adhering to an anti-inflammatory diet for a month helped, also. The price-worth it."

• Laf...
• February 9, 2015

Hydroxychloroquine for Undifferentiated Connective Tissue Disease "I started taking this medication three months ago, November. The doctor told me it would take up to three months to work. After the first month, the fatigue lessened. I didn't want to sleep all day long, I actually wanted to move. Soon after, the occurrence of joint pain also lowered. It still hurts when I push myself too hard and on rainy days, but the pain isn't consistent anymore."

• Tor...
• October 6, 2018

For Undifferentiated Connective Tissue Disease "Hydroxychloroquine has been a miracle drug for me. I've been on it for 6 years. I first got sick in 2010. I struggled with strange, debilitating symptoms for 2 years before being put on Plaquenil by a rheumatologist. I had a high positive ANA (antinuclear antibody test), positive rheumatoid factor, and low complement levels. My symptoms were Raynaud's, extreme sensitivity to cold, all-over body pain (muscles, joints, skin, tendons, everything hurt), GERD, migraines with aura, heart palpitations, nausea and diarrhea, flu-like feelings, fatigue, dizziness and weakness, and tingling and numbness that would come and go. I was barely managing to function. I was put on Plaquenil finally when my rheumatologist looked at my nailfold capillaries-they were abnormal in a way that suggested connective tissue disease. Within 3-4 months, I started to feel better. I got better and better over the next 6 months. By the time I'd been on Plaquenil for a year, I felt almost normal again with only the occasional bad day."

• lzz...
• February 28, 2016

For Undifferentiated Connective Tissue Disease "I had my doubts, but after 3 months, I found myself getting up and moving around. Within the year, I was off the couch. Prior to starting this medication, my days were difficult. I was constantly fatigued. Going to work was so difficult, so I worked 12-hour shifts on the weekend (I'm a nurse). I would rest all day Friday to prepare myself and all day Monday to recover. I lived this way for more than 10 years until diagnosed with UCTD. Now I've been on Plaquenil for 6 years, and I feel like I have a life again. I worked full time for the past 5 years."

• 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."

• Lou...
• Taken for 2 to 5 years
• May 29, 2018

For Lupus "Life saver. I was on for 4/5 years at 400 mgs daily. Then reduced to 200 mgs every other day. This meant within 3 weeks I went into a flare. Back onto 400 mgs daily for 6 weeks, then reduced 2 times weekly to 200 mgs, managed 6 weeks, then mega flare. Back on the 400 mgs now for 3 months and will remain on this. It controls and reduces flares and damage. Sunlight tolerance and rashes are now in the past. Fatigue much improved. A bit of hard work to begin with, but keep with it. Ask for PLAQUENIL till your body gets used to it, then go for the generic HCQ. It does really assist in controlling the disease."

• OLD...
• Taken for 1 to 2 years
• June 6, 2020

For Lupus "Having taken Plaquenil for several years 20 years ago and had stopped for reasons I don't remember (I am a 79-year-old woman), my rheumatologist prescribed it for SLE and Sjögren's. I have been taking it for a little over a year again. After taking it for a little over a year, I recently began having irregular heartbeats, and the fatigue has returned with a vengeance. Last night, I was unable to sleep due to my flip-flop heartbeats, and my blood pressure was elevated considerably. Unable to reach my rheumatologist after several days and numerous calls, I did not take my Plaquenil today, nor will I continue on it...and will be looking for another rheumatologist. Fatigue is unbearable, and I hope I can find a serious doctor to help me until I can leave Arizona for a cooler climate. I moved back to Arizona a couple of years ago after living in a much cooler climate, and it has bothered my SLE and Sjögren's enormously. Utah, here I come!"

• Kik...
• August 16, 2016

For Undifferentiated Connective Tissue Disease "Not sure what I have. High anti-CCPs. Started with left hand finger and joint swelling that did not go away with some joint knuckle pain. Then having some knee and ankle joint pain in the mornings that would go away by afternoon. Stiff neck below the skull area to neck spinal area. I would get occasional calf and foot spasms. Muscle weakness and strength gone. Once I started the drug, I felt like the drug was doing nothing but giving me undesirable side effects. The nausea lessened with time along with the feeling of loss of balance. I felt like my brain was in a fog for quite a while, and my energy level is lower with some fatigue about half an hour after taking the drug and always with food. These side effects became more tolerable. Seventeen weeks before improvements."

• 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!"

• mag...
• September 3, 2011

Hydroxychloroquine for Sjogren's Syndrome "Almost a complete turn around from three years ago - fatigue still a factor at times as well as muscle pain but NOTHING compared to what it was like before taking it."

• ljk...
• January 16, 2013

For Lupus "I've taken this on and off for 7 years, and it helps with my joint pain and hair loss. It just takes time, so be patient. The fatigue is almost gone as well."

• Byt...
• November 16, 2010

For Sjogren's Syndrome "I've been taking this for 2.5 months as I feel terrific. No more fatigue and a lot less pain."