Hydroxychloroquine for Lupus User Reviews (Page 2)

• MKa...
• Taken for 5 to 10 years
• October 11, 2019

"Plaquenil is a unique drug that helps control/suppress certain autoimmune symptoms. Plaquenil will not work for everyone with autoimmune issues. But there are other drugs like Erythromycin, Azithromycin, Doxycycline, Fluconazole, Malarone, etc. that may work better for your autoimmune condition. Also, taking 100 mg of Doxycycline an hour before the Plaquenil allows the Plaquenil to work more effectively by breaking down the biofilm of the cells, allowing the Plaquenil to penetrate the cell faster and more effectively. If you have fungal-related issues like pleurisy, edema legs, circulatory issues, thickening of your blood, certain heart issues, or clotting of arteries, etc., a drug like Fluconazole twice a day with aspirin for at least 6 weeks up to 6 months may actually help relieve those types of symptoms. Everyone is different; the key is having a physician that will help figure out what works best for you."

• Bee...
• 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 a while. 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 were 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."

• Ray...
• Taken for 2 to 5 years
• November 16, 2020

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."

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

"Plaquenil changed my life. 90% improvement after about a month of 400 mg 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 and fully within a year of starting Plaquenil. It is fantastic for fatigue and pain. I am sick much less often than prior to starting Plaquenil (hydroxychloroquine is the generic name.)"

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

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 mother's 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."

• 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, 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 dealt with this for about a month, thinking that it would just go away, that it was a change in 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 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. 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."

• Bel...
• Taken for less than 1 month
• March 22, 2020

Hydroxychloroquine "I started taking Plaquenil about 2 weeks ago for SLE, and if I had been drinking around the time I’m supposed to take my pill, I just wouldn’t take it. 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."

• Kgi...
• 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. I have a little stomach cramping, but I can tolerate that. So far, so good."

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

"I was diagnosed with lupus, RA, Sjögren's when I was around my late 40s. The lupus came first and the rest thereafter. I was given hydroxychloroquine after a year of diagnosis, and within days, I 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."

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

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."

• Ell...
• 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!"

• C-H...
• 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 it for 6 years to see if my hair would start growing back. Well, after 30 days, there was no change in 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 having bad chest pains and heartburn. 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 careful if you stop taking them. Trying Viviscal and biotin. I will update again."

• Jan...
• 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 Mountain fever, lockjaw, Legionnaire's disease, and bullous lupus and has gotten really good results from hydroxychloroquine."

• Ebo...
• 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 retina was disconnecting. I went to a retina specialist, she disagreed. The ophthalmologist told the rheumatologist to stop the Plaquenil. My rheumatologist said no, just cut the dosages. I still take the drug. The rheumatologist said this is the drug that controls my SLS."

• Est...
• 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 a very high sed rate and swelling of the 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 2X yearly."

• Lac...
• 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 in SLE. I haven't noticed any side effects yet."

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

"I have had no problems. However, after research, I cut my dose to 200 mg 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."

• 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."

• jud...
• April 25, 2016

"I was diagnosed with Sjögren's and systemic lupus some 5 years ago after 3 years of tests, etc. Initially, I was on 40 mg Plaquenil and 30 mg predisolone (steroids). After 2 years, I was weaned off the steroids, I gained so much weight, and the moon face was terrible. I have had several flare-ups when I take 10-15 mg of 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 reactions if I don't use 50 sunscreen all the time, but my quality of life has increased 65%. I am now on a reduced Plaquenil dose of 200 mg per day, steroids as and when I get a flare-up."

• Sbe...
• December 10, 2017

"I was recently diagnosed with SLE and started Plaquenil 200 mg once a day. It's been over a month now, and I feel absolutely no difference in joint or muscle pain, but I 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 a new rheumatologist next week, as the first 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."

• pan...
• 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, the doctor is letting me take half a pill for 3 weeks, then if all is 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."

• Dee...
• Taken for 1 to 2 years
• January 18, 2015

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

• Cha...
• 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 months. The normal is 1 year, just my eye doctor 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's not this simple. The best advice 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."

• Her...
• Taken for 1 to 2 years
• October 24, 2023

"Have had systemic lupus for 4+ years, diagnosed (finally) 1 year ago and was put on hydroxychloroquine (400mg a day). Other people stated it took weeks to feel a difference but within a few days I felt like 90% better. Had an anaphylactic experience the first week but dreaded going back to fatigue and pain, so I just lowered the dosage and powered through it (not recommended for most). I get bad itching episodes on it (not normal itching... like neurotic itching) but I have to deal with it. There are no long-term medications that can replace this for me. Heart pain, joint pain, fatigue, etc. all gone. I feel like I went back 10 years. Side effects suck but better than the alternative."