Hydroxychloroquine for Sjogren's Syndrome User Reviews

• lwi...
• Taken for 5 to 10 years
• May 2, 2013

Hydroxychloroquine "Before Plaquenil, I would be in bed for days at a time, unable to move, excessive pain, ice cold, migraines, the whole gamut. My body felt ancient. At first, the rheumatologist thought I had leukemia, then Lupus, and rheumatoid arthritis, and finally, biopsies started giving us a more refined treatment plan. With this medicine, I am in much less pain. I can walk for an hour at a time. I can shop for groceries again. I feel like I have a life again. I have had brief periods, never more than a month without it, and I know that life without the benefit of Plaquenil is no life at all. Yes, I have to see the retina specialist but in all this time, my eyes are fine. Don't hesitate to try it even though new treatments can be scary!"

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

Hydroxychloroquine "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."

• pjt...
• September 11, 2011

Hydroxychloroquine "This medicine has changed my life. I'm a nurse with primary Sjogren's Syndrome. It took 10 years for a diagnosis and another 10 years for a rheumatologist to prescribe Plaquenil. I have never felt so good. Minimal joint pain, lots of energy, able to sleep at night, what could be better! I was able to complete an eye exam for the first time in 9 years. I'm enjoying life pain-free and with energy!"

• Lum...
• June 3, 2011

Hydroxychloroquine "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."

• Ann...
• August 30, 2015

"I have been taking hydroxychloroquine for 6 years. I have primary Sjogren's and Hashimoto's. Before, I was tired all the time and could not lift a 3 lb dumbbell. Sometimes I could barely walk, my neck, knees, elbows, etc. were always in pain. The bottoms of my feet hurt - I dreaded getting out of bed in the morning. Initially, I took 2 of the 200 mg tabs per day. Years later, this was cut to 100 mg per day. 3 weeks ago - at my request - doctor let me cut it in half to 50 mg per day. I am 58 years old, go to the gym 4-5 times per week. Yesterday I did chest press with 60 lbs, heaved 50 lb barbell overhead, did rows with 90 lbs... I love Plaquenil."

• Suz...
• Taken for less than 1 month
• August 22, 2019

"I just had my yearly eye exam. Last year’s was just fine. This year I have the start of plaquenil toxicity in both eyes. This in only one year. My doctor told me it is reversible at this point. What about those that don’t get frequent eye exams because of cost, etc. I was taken off it immediately and put on methotrexate. I am so fortunate to have such a careful doctor. Eye CT scans every other year. Please be very careful taking this drug. Be your own advocate if your doctor doesn’t think it’s important."

• jjm...
• Taken for 1 to 6 months
• August 3, 2015

Hydroxychloroquine "It also took ten years to diagnose correctly. At first, I took 2-200 mg of Plaquenil, and it gave me an irregular heartbeat. I discontinued it for a few weeks, then the rheumy asked me to try again, one 200 mg every other day. After six weeks, I had an improvement in CRP and sed rate, even though the doc didn't expect any improvement on that low dose. Then he increased me to one pill each day. It did increase my migraines, so he said to take it before bedtime with an anti-anxiety drug. Side effect... sleeping much better... wonderful side effect. Occasionally, I have to take Tylenol during the night if a headache wakes me up. Now, I realize my extreme dry mouth seems slightly improved. Joint pain and foot pain are much better. HAPPY!"

• nan...
• April 25, 2011

Hydroxychloroquine "I have been on Plaquenil 200 mg twice a day for 6 years and it has helped me tremendously. I couldn't get up from a chair or close my fists after being diagnosed with primary Sjogren's Syndrome. It took about a year, and I'm 90% better. I am very careful to have a thorough eye exam every year to monitor potential ocular side effects. It is worth a try and the side effects are definitely less than long-term steroid use."

• Anonymous
• February 26, 2012

Hydroxychloroquine "It has taken about 6 weeks for this medicine to work. The benefits have been subtle. I noticed that I have been able to do more, get out more, and have even cut back on a dose of painkillers. My head is clearer. I just sort of feel different, not miraculously different or anything, but just more like my normal self. I am still severely allergic to the sun or any UV exposure and can be sick for days if I am not careful or if I do too much, but I do believe the Plaquenil has helped. I have been on it for 2 months now, so I look forward to further benefits from this medicine. The only side effects are erratic blood sugar. If I don't eat regularly, I go hypo - badly hypo, although my doctor said he has never heard of this, so perhaps it isn't related."

• rem...
• June 7, 2014

Hydroxychloroquine "I am only on Plaquenil for a month now for primary Sjogren's Syndrome, having been diagnosed in January 2014. So far, I am feeling much better in that I am sleeping so much better. Before taking medication, I would wake 5-6 times a night and found it difficult to go back to sleep. Now I only wake up once and go back almost immediately. This is the first thing that I have noticed, and I know it is very early days as my Rheumatologist said it can take 2 months before any results."

• Sjo...
• Taken for 1 to 2 years
• October 23, 2013

Hydroxychloroquine "I have been on Ranbaxy generic Plaquenil for 11 months now. I don't think it helps me very much, but I continue to take it because I am not experiencing any side effects. My condition is not well-controlled with this drug alone, and I will soon start an additional DMARD after recently finding out I am intolerant of MTX. My battle with Sjogren's has been so much more than glandular issues. It has attacked my biliary system, causing me to lose my gall bladder and have complex issues with the pyloric valve, lower esophageal sphincter, and sphincter of oddi. This causes a variety of symptoms such as bile and acid reflux, bile salt diarrhea, nausea, vomiting up bile, and right upper quadrant abdominal pain. I have signs of kidney disease too."

• Tay...
• Taken for 6 months to 1 year
• May 20, 2019

Hydroxychloroquine "I’ve been on Plaquenil 400 mg once a day for 6 months now due to Sjögren's. If you are wondering how long Plaquenil takes to work, it took about 3 months before I started feeling better. Now at 6 months, I’m noticing more symptoms. I have a rash on my arms, and my face feels like it’s burning, but I don’t have a sunburn or anything. I’ve also noticed my eyebrows look like I have bleached them."

• She...
• December 4, 2011

Hydroxychloroquine "Plaquenil has given me back my quality of life. I think I've been on it for about 3 years now. However, I've recently stopped taking it as I am having flashes in one eye and don't have the money to see a retina specialist - or an eye doctor for that matter. Now that I have stopped the medication, I am back to having constant pain throughout my body - especially in my joints... and in my bones, and I am exhausted and sleep a lot without feeling rested. As soon as I get my eyes checked and if my exam shows good results, I will be back on Plaquenil immediately."

• Bab...
• Taken for 5 to 10 years
• September 9, 2016

Hydroxychloroquine "I have been on Plaquenil for several years, first the generic Plaquenil has no coating to protect your stomach lining. If you have side effects first, try brand. I know doctors say there is no difference. But the composition of the drug may not affect the effectiveness of the drug, but it will affect the way it is absorbed in your system, which will affect your side effects."

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

"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

"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."

• Sea...
• Taken for 5 to 10 years
• May 21, 2015

Hydroxychloroquine "I have been on this medication for approximately 8 years. Before I started this medicine, I was in terrible shape. With Sjogren's syndrome as my primary autoimmune disease and rheumatoid arthritis as my secondary autoimmune disease, I was in terrible persistent pain, had terrible joint ache, and was incapacitated for about four months before finally being diagnosed and given this. Along with steroids, this medicine, and some regular doses of ibuprofen, I found I was able to be mobile again, to go back to work, and have a quality life again. I have not found that being on the same dosage has lessened its effectiveness over the last 8 years. During major flares especially, it would be near impossible to have a good, healthy life."

• Nin...
• May 27, 2013

"Been on it for 6 weeks. I hate taking medicines, but I've noticed huge differences. Cautiously optimistic. Apparently need to take it for 6 months to see full benefits. No sun sensitivity, rash on chest smaller, dry eyes minimal, vaginal dryness gone, ear dryness gone, nasal dryness and sinus dryness gone. Never been so happy to have snot. Sinus pain gone. Joint pain still significant, but connective tissue pain minimal, and body stone fatigue reduces by 75 percent. Occasional gastric stuff, but not debilitating like before. I feel human again But can't wait to reduce dose and get off of it."

• Anonymous
• September 10, 2012

"I have been on generic hydroxychloroquine now for 2 years. I have primary Sjogren's and secondary diagnosis of Fibromyalgia. Apparently, I had Sjogren's for over 10-15 years before doctors figured it out. If the Fibromyalgia hadn't hit me 3 years ago, I guess I would still be suffering. I take 200 mg twice a day, and it has helped me so much. I use it with Savella for my Fibro pain. The only problem I have is a slight buzzing or ringing in my ears. But I can work full time and have a normal life. Still get occasional pain in feet and legs, but all in all, feel great."

• Anonymous
• Taken for 1 to 6 months
• October 24, 2012

"I ignored my doctor for months when he wrote this prescription. I finally started it after an eye doctor lectured me because I was seeing him for an immune response eye infection. He gave me a good talking to and agreed with the rheumatologist that I do, in fact, have Sjogren's. So I started it and I can't believe I wasted those months not taking it! It is the only thing that has helped me! The only issue I have is I have been on 200mg, 2 tablets twice a day for about 6 months, and now they decreased it to 1 tablet twice a day. I'm a little nervous about the decrease because I don't want all that pain back!"

• Sjo...
• May 27, 2015

"Before starting this medication, I felt deathbed tired. In my forties, I was ready to go home to heaven, that's how awful I felt. After starting on 200 mg, within a few months, the joint pain was almost completely gone, and fatigue was somewhat better. Doc bumped me up to 400 mg, and now I'm still tired, but I don't sleep 16 hours a day anymore at least. It's a lifesaver. (My other doctors are freaked out by the medicine and think it's the cause of my problems, but they should have seen me before I was on it. I thank God for this medication!)"

• Fin...
• Taken for less than 1 month
• March 18, 2021

"I was just recently diagnosed with Sjögren's syndrome. It has been a challenge to understand all of this. Does anyone else have numbness and tingling in feet and hands? My doctor says it is probably from chemo I had 9 years ago. Not sure I believe that. I was started on 200 mg a day. Also, had anyone experienced the possible heart complications from the drug?"

• Anonymous
• January 5, 2012

Hydroxychloroquine "I have taken Plaquenil for approximately 9 months and have started getting red peeling sores on my legs, thought it was psoriasis, but now I am unable to show my legs because the sores are so many. Stopped taking medicine for the past week, will be going to the doctor today."

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

"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!"

• Del...
• January 21, 2018

"Diagnosed a year ago with Sjögren's. My doctor prescribed generic Plaquenil and Nabumetone. Before meds, I was hospitalized overnight, not knowing what the pain was from. It was so bad I couldn't walk. Muscles, joints, and overall pain everywhere. I was in tears from the pain, trying to get by every day. The combo my rheumy gave me worked fairly fast. Within two months, most pain was gone. Now, I am 100 percent pain-free. Still very, very tired and still have dry eye problems. I cope with those things and am grateful for what Plaquenil has done!"