Hydroxychloroquine for Sjogren's Syndrome User Reviews (Page 2)

• Che...
• Taken for 1 to 6 months
• February 4, 2020

"I was on this hydroxychloroquine for 6 months and then suddenly developed severe itching (burning-like sensation, worse than any itch I have ever had) and a rash that went from my neck to my feet. It did help slightly with joint pain. The itching was worse than the joint pain, so I stopped taking it and the itch went away slowly."

• Mog...
• November 12, 2017

"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."

• jan...
• Taken for less than 1 month
• December 8, 2017

"Prescribed hydroxychloroquine after having been in the hospital with idiopathic thrombocytopenic purpura (ITP). The ITP was being dealt with by the hematology consultant - reducing doses of prednisolone. The rheumatology consultant prescribed the hydroxychloroquine (HQ), as I suffer from Sjogren's syndrome symptoms. The HQ caused me to be unable to swallow - this was extremely distressing. My GP advised me to cease taking it immediately. It took several days to be able to swallow properly. Although I had taken only six days at 400 mg, I have as a result permanent weakness of muscles and tendons affecting the neck, legs, trunk, and lower back. This medication has had serious and permanent consequences in my case. The hematology consultant would not have considered its prescription."

• CAV...
• Taken for 5 to 10 years
• June 21, 2015

"I was diagnosed with Sjögren's approximately 8 years ago. Rheumy started me on Plaquenil, and it helped with the tiredness and no energy for a while, but it did not do anything for dry eyes/saliva at all, so why take it? It is supposed to slow down the immune system so your problems aren't as bad, i.e., tears/saliva. But I started getting bronchitis in January-April, took antibiotics, felt good for a week, and then the next month it was back again. The doctor said to stop Plaquenil so your immune system can help you heal. So when I stopped taking it, I finally healed and haven't had bronchitis since, so I decided I was not taking a drug that was not helping my Sjögren's, nor did I want to take a drug that slows down the immune system to help me fight off whatever else."

• Peg...
• Taken for 5 to 10 years
• March 28, 2018

"Been taking it for 8 or 9 years. No adverse effects except that my ears started ringing after maybe 3 years. Doc said he had never heard of that. I honestly don't know that it does anything, but I'm afraid to stop and find out! It definitely did nothing for my dry mouth and eyes. I use Restasis 2x a day and Pilocarpine 2-3x a day. I still have joint pain just about everywhere, some severe. It didn't help the muscle/connective pain, but I solved that with a year of frequent acupuncture. My doc insisted I see the acupuncturist, in fact, he saw the same person for his knee pain. Some arthritis doc he was! Acupuncture saved me. So, I'm now trying to decide if it's worth continuing."

• Lal...
• Taken for 1 to 2 years
• October 25, 2016

"I have Sjögren's and subcutaneous lupus. I took this drug 10 years ago, no side effects, but really no effect. I tried it again 10 years later. Huge difference and not in a good way: severe nausea and dry heaves, no energy, could stay in bed all day, complete weakness. Now that I've gone off of it 4 days ago, still extreme nausea. I've lost 35 pounds and was told by the pharmacist it would take 2 months to no longer be nauseated. The other immune drugs have scary side effects, almost worth waiting for a flare and dealing with steroids, then the side effects of the immune suppressants and Plaquenil, name brand and generic, not worth the constant feeling of vomiting. There has to be something that works without major life-threatening side effects."

• SSS...
• Taken for 1 to 2 years
• March 27, 2021

Hydroxychloroquine "No side effects, but no apparent benefit, either. I quit when my ophthalmologist told me it can cause optic nerve damage and that anyone taking it should be given a retinal examination every six months-which the rheumatologist who prescribed it wasn't doing."

• Spa...
• Taken for less than 1 month
• August 2, 2019

"Started taking hydroxychloroquine on Saturday. Had to stop on the following Monday. Very loose stools, going to the toilet at least 4 times a day. Had mood swings, and so won't be taking any more. Would prefer the pain."

• wan...
• Taken for 1 to 6 months
• June 18, 2021

"I wasn't going to register, but I saw another person said they were on hydroxychloroquine for Sjögren's and they also got extremely itchy. That is exactly what happened to me, and wow, I was so itchy after about 6 months on the medicine. My doctor took me off of that, and the itch is mostly gone. I also agree with another person who posted that said it doesn't seem to be doing anything. I would say it didn't help me at all either, at least nothing noticeable. No improvement in symptoms."

• Lon...
• Taken for 1 to 6 months
• November 6, 2021

"I've been on hydroxychloroquine for just over 10 weeks, for pain and stiffness related to Sjögren's, hEDS, and arthritis. For the first few weeks, I didn't notice anything and thought it wasn't going to do anything - then one day I suddenly realized I'd walked up the stairs from my local train station to the outside without having to stop and rest! There's only about 13 steps, but usually, I dread going up them, and would usually take a detour of almost 30 minutes to avoid them, but this time I just didn't think before heading up them. I've even managed to reduce/come off other medication because it's worked so well! Is it perfect? No - not only does it taste awful (whyyyy? *lol*), but I still get pain/stiffness in the morning, especially as we're going into the colder months. And I have to take my doses morning and lunchtime, as if I take it too late, I can't get to sleep (does anyone else get this?) But overall? Second most important medication I take (behind my ADHD meds)!"

• Sha...
• February 24, 2022

"Have had Sjögren's for years, did not take anything. Don't do well with medications. Went to Dr. today, agreed to 200 once a day hydroxychloroquine. Main problem: my legs were really painful, toes numb and tingling, joint pain, poor sleep, gastric issues, gas excessive. Dr. said he never heard of leg pain and toes numb and tingling. I am going to give the med a try. Hope I can tolerate it."

• Anonymous
• October 10, 2011

Hydroxychloroquine "Was diagnosed with Sjögren's syndrome several years ago and prescribed Plaquenil. While taking Plaquenil, I had no difference in my symptoms. After doing years of research, I believe that I may have been misdiagnosed and actually have a parasitic infection (not malaria)!"

• Ang...
• Taken for 1 to 6 months
• December 14, 2022

"I took hydroxychloroquine in 2010 (the first time), and it took 3 months before I felt any better. Life saver, actually. Could move, much, much less internal pain! It took a long time to work, but it was worth the wait. Fast forward to 2022: hopefully, I get the same results!"

• ang...
• December 22, 2021

"It has been recommended to me, but I feel that all the possible side effects are something that I already experience. The possible effect on eyes makes me nervous, as I already have problems with my eyesight. I was going to take it for muscle pain and lethargy, one of the side effects can in fact be lethargy. Hmm, quite confusing. I am very nervous about taking it."

• Anonymous
• Taken for 1 to 6 months
• September 18, 2022

"It made me feel better, and I took it on an empty stomach, which did help me use the bathroom as I'm always constipated unless I eat 2-3 prunes daily. Anyhow, I don't take it for a long period, but will take it when I get ill. I know I don't always follow docs' orders, I'm a rebel like that. I do what works for me. But it was fine, and I use my homemade ointment for my eyes, which helps them stay refreshed and not dry. I think we get these ailments from ticks and mosquito bites. Wish we could rid of those pesky bugs. Good luck, everyone."

• dar...
• Taken for less than 1 month
• June 26, 2023

"My rheumatologist put me on hydroxychloroquine to help with Sjögren's syndrome and other autoimmune disorders. He said it would probably kick in about 2 weeks. My husband and I left for a vacation, and sure enough, it did kick in. I started with a huge rash around my entire torso. After a few days, it itched so badly that I could hardly stand it. The welts got larger and itchier. Strangely enough, I also had redness and itchiness on the tops of my feet. (I do not wear sandals). I had no idea what was causing all this, as we were in another state. I went to an emergency clinic and was diagnosed with an allergy, but we did not know what caused it. The doctor gave me a shot of steroids to calm everything down. While driving home the next day, I said to my husband, 'I know what it is!' It had been two weeks to the day since the rheumatologist prescribed the hydroxy--etc. I will never take that again. Pure allergy misery!"

• mag...
• September 3, 2011

Hydroxychloroquine "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."

• BLB...
• Taken for 1 to 6 months
• June 12, 2012

"I have noticed a marked decrease in fatigue. Very pleased with it. Also, little or no pain in my joints. I have more energy now than before. I am going into my third month of use."

• Sta...
• February 10, 2017

Hydroxychloroquine "This was not the answer for me. I developed a bad rash and itching over my entire body, and now my ears ring, and that will never go away. Just from taking it for under a month."

• Anonymous
• Taken for 2 to 5 years
• September 10, 2012

"Been taking for 2 years. Can really tell a difference when I don't take both doses every day."

• Pja...
• Taken for 1 to 2 years
• January 13, 2020

Hydroxychloroquine "I didn't have any side effects. I have been on for 1 year and 4 months. I'm not sure it is helping. Still have horrible dry mouth and eyes, leg muscle pain, itchiness."

• Anonymous
• January 22, 2010

Hydroxychloroquine "Helps with the fatigue but turned my hair orange!"

• RON...
• Taken for 6 months to 1 year
• January 31, 2020

Hydroxychloroquine "Helps a little bit, maybe 40 to 50%. Did not help dry eye or very dry skin and itching of arms and legs."

• Byt...
• November 16, 2010

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

• Anonymous
• March 31, 2011

Hydroxychloroquine "I have seen no benefits from this medication after months of use. My migraines have increased to almost daily now and have also increased in their intensity."