Hydroxychloroquine and Itching: What Users Say

• 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!"

• 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!"

• C W...
• December 9, 2017

Hydroxychloroquine for Rheumatoid Arthritis "I have been on Plaquenil for about 15 years without apparent side effects until this year. But this year, I have developed severe swelling of the face and a red rash on the upper half of my face. This also includes very difficult itching in odd places on my body, my eyebrows and eyelashes, my earlobes, my lower legs and lower arms, my scalp, and of course where the red rash was. This was twice cleared up with heavy doses of antibiotics and cortisone. However, my rheumatologist took me off all arthritis drugs, and we added them back little by little. When Plaquenil was finally included with the other drugs again, it took about three days, and my face started swelling, and the rash and itching. I can only assume that this was the cause of my allergic reaction, even after all the years of use."

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

For Sjogren's Syndrome "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."

• Sis...
• August 12, 2019

For Rheumatoid Arthritis "I started taking this drug, hydroxychloroquine 200 mg twice a day for rheumatoid arthritis. Immediately, I had extreme itching along both of my forearms and the sides of my neck all day long. I had no relief and extreme abdominal pain, like the worst cramps imaginable. I took Benadryl and Imodium D for the itching and stomach cramps and loose stools. After 5 weeks, suddenly, I could no longer see the time on my clock, my stove, microwave, TV channels, etc. I got alarmed and stopped taking the drug, my vision was blurry, and my eyes could no longer focus on signs, labels, even my own eyes. I could no longer see my pupils in the mirror. Stopped the drug and now I need to wear glasses all day."

• Pet...
• Taken for 1 to 6 months
• December 27, 2020

For Undifferentiated Connective Tissue Disease "It took several doctors and approximately 3 years before I was properly diagnosed with UCTD (Undifferentiated Connective Tissue Disease). My rheumatologist prescribed 200 mg of HCQ (hydroxychloroquine) twice a day. I’ve been taking it religiously since the middle of July 2020. It took exactly 10 weeks to the day to kick in, but after that, I felt much better and almost normal again. I began running again, starting at 3-5 km a run and got up to 8.5 km. Then, the day after that 8.5 km run, I started to feel worse. It’s been a week now, and I still feel horrible: muscle weakness, slight nausea, muscle aches. Hopefully, this is simply a flare-up and will go away again. The only side effect I have from HCQ is the occasional itching on my arms and legs. It happens about every 3 or 4 days. That is sometimes unbearable, but disappears in 20 minutes. I will continue taking HCQ and see where the journey takes me. I get my eyes checked regularly due to the HCQ therapy."

• CLa...
• March 30, 2020

Hydroxychloroquine for Undifferentiated Connective Tissue Disease "Took Plaquenil for two months, had to stop because of the reaction I had. Started getting very itchy. I didn't realize what it was at first, it was just my back that would last 20 minutes. Then, the longer I took it, the worse it got. Ended up with stinging itch all over that was lasting over an hour and a half. Unbearable, nasty drug, I will never take it again."

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

For Sjogren's Syndrome "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."

• ang...
• February 11, 2015

Hydroxychloroquine for Undifferentiated Connective Tissue Disease "For the past 2 years, I have had itching on my head. Can be any area of the scalp. None on the face. I take 50 mg of antihistamine every day, just to keep it mild. But it doesn't stop it. No redness, no dry scalp."

• Kat...
• September 19, 2019

For Undifferentiated Connective Tissue Disease "I took this for 2 weeks for systemic sclerosis. Then the swelling of lips, feet, and hands started. The itching is awful. Waiting for side effects to go away. Then will try a new med, I guess. Pain went away very quickly."

• Mct...
• Taken for less than 1 month
• September 10, 2022

For Undifferentiated Connective Tissue Disease "Prescribed for mixed connective tissue disease (MCTD). Was on it for 10 days and amazingly felt a return of energy and general improvement by day 7 or 8. However, around the same time, I noticed I was developing a new rash over my upper body, especially neck and face. By day 10, it felt like the worst sunburn ever. I had noticed itching much earlier and some rashing but initially thought it was the increased sensitivity to sun I'd been warned about. However, it continued to worsen even with no sun exposure. When I called the doctor about it, they had me stop for 2 weeks and start again at a lower dose. It took several days after stopping for those symptoms to clear. Increased energy lasted 1-2 days after final dose. Started back - that time I was itching terribly within hours of the second dose. Called again, and they had me stop completely. Itching continued for two days and also developed a feeling of numbness in my throat."

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

For Sjogren's Syndrome "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!"

• Sta...
• February 10, 2017

Hydroxychloroquine for Sjogren's Syndrome "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."

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

Hydroxychloroquine for Sjogren's Syndrome "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."

• 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."