Hydroxychloroquine for Lupus User Reviews (Page 2)

• emily...
• Taken for 2 to 5 years
• January 7, 2017

Plaquenil (hydroxychloroquine) "I was eventually diagnosed with SLE in 2012, 3 months after my first (& worst) flare. I took prednisone for a week, & started taking 200mg plaquenil & 2400mg ibuprofen daily, & 50-150mg tramadol as needed for pain. In my experience, the prednisone helped to reduce the excruciating, debilitating joint pain by calming the inflammation, & plaqenil & ibuprofen keep it at bay...for the most part. My rheumatologist took me off plaquenil 2 years ago; I still take 400 mg of ibuprofen 2X/week. I still get flares once or twice a year, but they are not as bad...6, as opposed to a 10 , on the pain scale. Tinnitus started a few weeks after I started plaquenil & I still have it. It's vastly annoying, but at least it doesn't hurt! best of luck to all!"

• Beeline
• Taken for 10 years or more
• August 27, 2016

"I had been on Plaquenil for nearly 30 years for lupus. So long that I didn't remember any side effects. I saw my rheumatologist recently and he said that he felt that I was in remission so I decided to come off of it for awhile. Within a week or so I noticed that I had a new dimple in my cheek, then within the next week the shape of my face changed and the "apple" cheeks that I had assumed for all these years was from lupus, disappeared. I have lost about 10 lbs since I went off a month ago and no longer have ringing in my ears or crippling vertigo. I do have a lot more pain and swelling but I will never go back on this drug. I am so thankful that I chose to try to go without it."

• Bell
• Taken for less than 1 month
• March 22, 2020

Plaquenil (hydroxychloroquine) "I started taking plaquenl about 2 weeks ago for SLE and if I had been drinking around the time I’m suppose to take my pill I just wouldn’t take it and I missed about 2 days and this has been my worst flare up. No side effects. I’m moody but that’s just a normal 21 yr old female. Don’t be hesitant to try this because anything is better than the pain of chilblains and joint pain. Will update in a few months."

• Raye
• Taken for 2 to 5 years
• November 16, 2020

Plaquenil (hydroxychloroquine) "I took Plaquenil for Lupus for 4 years. It causes eye pain, chest pain, stomach pain and gave my face a melasma appearance that is irreversible. It did NOT help with RA or Lupus symptoms at all, but my doctor wants me to stay on it or see a different doctor."

• Curse...
• Taken for 2 to 5 years
• November 30, 2016

"Plaquenil changed my life. 90% improvement after about a month of 400mg daily. Without this med, I only function at 10% with several flares per year. With this med, I'm lucky enough to now have 0-1 flares per year. Thank you, rheumy, for saving my life. Side effects are all GI related for the first few weeks to a month, but are no longer a problem after your body adjusts to the med. I also grew my hair back quickly & fully within a year of starting Plaquenil. It is FANTASTIC for fatigue & pain. I am sick much less often than prior to starting Plaquenil (hydroxychloroquine is the generic name.)"

• Anonymous
• Taken for 1 to 6 months
• March 24, 2017

"I started taking this drug in 2015 when I was diagnosed with SLE. It did wonders! For my pain and stiffness and inflammation in my joints. It also slightly helped the rash I developed on my face. About three months after starting use I noticed that I was losing an amazing amount of hair. I don't with this for about a month thinking that it would just go away that it was a change of my hormones or something of the like but that was not the case. The hair loss continued until I had lost about 45% of my hair. I went off at this drug in December 2015 it is now May 2017 and I have finally gotten most of my hair back to the length I can be happy with."

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

"Life saver.. was on for 4/5 years at 400 mgs daily. Then reduced to 200 mgs every other day. This meant within 3 weeks went into flare. Back onto 400 mgs daily for 6 weeks, then reduced 2 times weekly to 200mgs, 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 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"

• M-Squ...
• Taken for 1 to 2 years
• March 21, 2020

Plaquenil (hydroxychloroquine) "I've had SLE and a host of other related illnesses for over 30 years. After my fourth (or fifth?) battle with pericarditis, my rheumatologist put me on 200 mg of plaquenil. No real side effects however, I have always been slightly anemic and this seems to have increased quite a bit, mimicking the symptoms of narcolepsy "

• LacyT
• Taken for less than 1 month
• February 16, 2020

"I started the hydroxychloroquine medication a week ago and within the first day or two noticed a big difference in my pain and fatigue with major improvement SLE. I haven't noticed any side effects yet."

• louis...
• Taken for 10 years or more
• November 15, 2020

"Hello. I diagnosed with lupus, RA, sjogrens when I was around late 40's. The lupus came first and the rest thereafter. I was given Hydrochloquine after a year of diagnoses and within days got my life back. I had fever and pain, etc for years prior to this. I am active.I am now 68 and thank goodness for this drug hydroxychloroquine. I do have mild tinnitus since taking it but that is minor as I AM FUNCTIONING like I need to be and I have a good life back."

• Ahend...
• Taken for 1 to 6 months
• July 4, 2021

Plaquenil (hydroxychloroquine) "Started plaquenil a little over 30 days ago. I was so excited because I started to have more energy very early on. About a week in I did a bunch of stuff at my mothers house —outside!!—-and didn’t have to go hide in a hole for 3 days to recover. I started rethinking my whole life again. I thought maybe I could go back to school or work…. Life could be normal again? I thought too soon. The last three weeks have been a whirlwind of negative thinking and random outbursts. I rarely get mad at anyone and found myself annoyed at the whole world. The final straw was a visit from my grandson. I was so irritated I could barely watch him. I am not willing to accept this. The trade off is too great. What’s life if you can’t enjoy family visits? I won’t be taking it anymore as of today."

• Kgile...
• April 27, 2010

"I was diagnosed with Lupus, along with rheumatoid arthritis. I started taking this medication about 4 weeks ago and over time it has minimized the inflammation I was experiencing, along with the chronic pain in my hips and knees. I never thought I could say that I am about 80% out of pain which is a miracle! For me, taking it with food is a must. Have a little stomach cramping but I CAN tolerate that. So far, so good."

• Jano
• Taken for 5 to 10 years
• April 1, 2020

"My husband has crest syndrome, lupus, scleroderma, he has been on hydroxychloroquine for 5 plus years, and has had Rocky MTN fever, lock jaw, legoinares disease, and bullous lupus and has got really good results from hydroxychloroquine"

• Ellen...
• January 11, 2018

"I had lost use of wrists and part of hand and arm for 6 months. Then after taking Hydroxychloroquine I was able to use wrists and hands and arms almost completely once again. Still have some wrist pain but can work around it !"

• Estella
• September 8, 2010

"I took this medicine for 9 years and then stopped, blaming it for my gastrointestinal problems. I didn't start it again until 6 years later when I had a flare up with very high sed rate and swelling of ankle joint. I then agreed to start it again. I feel so much better. My skin which was getting really scary, but not Lupus plaques, has improved. I regret discontinuing the use of Plaquenil. I could kick myself. I also have my peripheral vision checked 2 X yearly."

• Ebony...
• Taken for 10 years or more
• June 28, 2019

"I have been on this drug for over 20 years Recently during my annual eye exam my Ophthalmologist said my retaina was disconnecting. I went to a Retina Specialist , she disagreed. The Ophthalmologists told the Rheumatologist to stop the Plaqunil. My Rheumatologist said no just cut the dosages. I still take the drug. Rheumatologist said this is the drug that controls my SLS."

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

"Having taken Plaquenil for several years 20 years ago, and had stopped for reasons I don't remember (I am 79 yr old woman), My rheumatologist prescribed it for SLE and Sjogren'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 heart beats, and the fatigue has returned with a vengeance. Last night I was unable to sleep due to my flip flop heart beats, 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 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 Sjogrens enormously. Utah here I come!"

• C-HereC
• Taken for 1 to 6 months
• April 13, 2017

"I am back, I wrote previously. I wanted to give an update. I stopped taking the twice a day hydroxychloroquine after taking them 6 yrs to see if my hair would start growing back. Well after 30 days there was no change to my hair situation. Come to find out I have alopecia. Although my scalp is healthy I am praying my hair will eventually grow back. I am back on the hydroxychloroquine due to me having bad chest pains/heart burn. I guess the pills were also helping in other areas in my body fight off lupus ailments. So once the drugs kicked back in after 2 weeks my chest pains are gone and I no longer have to take antacids. Be care if you stop taking them. Trying viviscal and biotin. I will update again."

• Mel
• Taken for 2 to 5 years
• January 9, 2019

"I have had no problems. However after research I cut my dose to 200mg a day. Meds scare me. Benlysta and methotrexate made me sick. Been on Plaquenil for years now but don't want to go blind which is rare."

• Sbell...
• December 10, 2017

"I was recently diagnosed with SLE and started Plaquenil 200mg once a day been over a month now and feel absolutely no difference in joint or muscle pain but do have terrible nausea 24/7 from it with or without food and take Nexium as I’ve had GERD for years but take it 4 hours apart from the Plaquenil as directed. My hair is falling out like crazy. I go to new Rheumatologist next week as the 1st one was horrible and I can’t ask her a question without getting a response of ask your PCP what do I need her for then she’s the specialist not my PCP. I take Percocet for the pain which is the only thing helping me right now. Want off this Malaria Drug."

• jude...
• April 25, 2016

"I was diagnosed with Sjogrens and systemic lupus some 5 years ago after 3 years of tests etc. Initially was on 40mg plaquenil and 30 mg predisinole(steroids). After 2 year was weaned of the steroids, I gained so much weight and the moon face was terrible. Have had several flare ups when I take 10-15mg steroids for a couple of days. Plaquenil has helped me a lot, initially I had a job to get out of bed, so tired, every joint and muscle ached and hurt, but this has reduced over time, I still get terrible pains in my joints, suffer severe reaction if i don't use 50 sunscreeen all the time, but my quality of life has increased 65%, I am now on reduced plaquenil of 200mg per day, steroids as and when I get a flare up."

• pando...
• February 25, 2011

"I am taking hydroxychloroquine for Lupus...I was on the medicine originally for 4 weeks...had the mood swings...they leveled out. Then random ear ringing in my left ear. Doctor discontinued which bummed me out. The rash on my cheek almost vanished and when I went off the medicine it came right back along with all the joint and muscle pain. Upon review doctor is letting me take half pill for 3 weeks then if all well boost up to one versus 1 1/2. I don't know the connection to the ears but the way I felt and looked was worth a little random ring. I am hoping for the best."

• DeeGlp
• Taken for 1 to 2 years
• January 18, 2015

"Its been a year and 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 irritated tummy. I asked if I could again cut dose in half, which worked out to like 100mg a day. I felt like my old self, but doc thought too low dose. I turned down prednisone all together, 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 private area, tummy issues, brain fog, dry mouth at the front, and a few others). I had culture on urine and nothing...but bilirubin in urine and trace ketones too, so gonna double check that out. Rheumatology thinks I should go off this."

• Anonymous
• March 6, 2009

"I've had a great experience with this medicine. It's something that I've been taking since I was diagnosed in September 2007. One thing you have to keep in mind is that you HAVE to have your eyes checked at least twice a year."

• Char
• Taken for 10 years or more
• September 28, 2020

"I have used this drug for many years now without any problems. I get regular eye exams every 6 mths. The normal is 1 year, just my eye Dr likes to check on his patients on it every 6 months. I can only base my opinion on what I know about my experience with it. I have been blessed. If it was this easy for everyone I’d say by all means take it, however I know that sometimes it not this simple. The best advise I can give is to research and talk it over with your Healthcare provider. If you feel it’s right for you try it, who have you to lose? I wish you the very best."