Hydroxychloroquine for Undifferentiated Connective Tissue Disease User Reviews

• LGF...
• Taken for 10 years or more
• December 24, 2017

Plaquenil (hydroxychloroquine) "I've been on and off Plaquenil for 13 years for Undifferentiated connective tissue disease (UCTD). I have NEVER had a flare while on Plaquenil. The only times I've had flares were when I stupidly stopped taking Plaquenil. That is a mistake I will never make again, after a life-threatening flare in 2015. Now I am on Plaquenil for life, and 100% in remission. This drug has been absolutely amazing for me. I guess it just depends on individual body chemistry, but I love this drug so very, very much. Now, honestly, you have to give it 3-6 months to fully take effect, and it can cause GI upset and other side effects at first. You just have to tough it out and be strong-minded. Plaquenil is a game-changer for many UCTD patients but you need to be tough and patient!! Don't skip doses."

• Ang...
• Taken for 5 to 10 years
• May 1, 2019

Plaquenil (hydroxychloroquine) "I have been taking 200 mg of Plaquenil twice a day for 10 years. I get my vision checked every 6 months. I have had some thinning of my hair and can be nauseated in the morning if I don’t eat, but these are minor side effects compared to the symptoms it is treating. Switched to a new rheumatologist (mine retired), and the first thing he did was start weaning me off Plaquenil, saying I’ve been on it too long. I’m down to one pill once a day and absolutely miserable. I’m easily fatigued, achy, and feel exhausted. Started going to bed earlier and earlier but not feeling rested. Don’t want to get out of bed. Now I’m depressed because I felt great on the drug he says I can’t have."

• Jue...
• January 11, 2020

Plaquenil (hydroxychloroquine) "Horrible drug for me. I was on it for about three days when I noticed a spotty rash everywhere on my face. On day six, I was out and about when I started sweating, lost hearing, got very nauseous, and then collapsed. I started convulsing on the ground. Fortunately, this happened right outside of an allergy clinic, and they were trained in first aid and had supplies. I had a cannula for a saline drip put in right there on the hallway floor, an oxygen mask put on my face, and they tried to intubate so that I could breathe. I had very low blood pressure and heart rate when the paramedics arrived. There was so little blood pumping that their finger heart rate monitor couldn't pick it up, and they had to do it manually! On the way to the ER, my glucose levels were very low and heart rhythms wonky. After hours in the ER, they determined it was an allergic reaction/adverse effects from Plaquenil. Disclaimer: This was just my experience and was a fairly experimental choice of treatment in my case!"

• Cha...
• Taken for 2 to 5 years
• July 20, 2016

Plaquenil (hydroxychloroquine) "I did not have any adverse effects as such on starting this medication, except a mild skin rash. I have been on it for about 4 years. I have been relatively okay, but what produced a dramatic improvement was an anti-inflammatory, antitoxic diet with no artificial, packaged, or canned foods, no sodas, etc., accompanied by yoga and especially breathing exercises, pranayama, daily for 30-45 minutes, which produce miraculous results over time."

• mus...
• Taken for less than 1 month
• December 29, 2013

Plaquenil (hydroxychloroquine) "I just started this medicine a few weeks ago. My rheumatologist told me that it could take up to 12 weeks to work. I have had stomach cramps, diarrhea, headaches, and worsening of symptoms in my joints. I am not going to give up on this. I don't really want to rate it because I have not been on it long enough. I wanted to comment so that others could possibly get some encouragement to hang in there if possible."

• Saz...
• Taken for 2 to 5 years
• April 11, 2020

"I've been on hydroxychloroquine for 2.5 years for undifferentiated connective tissue disease. I started in my mid-20s, and I have noticed a significant difference in my overall well-being. I still get flares, and I still suffer pain, but it doesn't leave me in bed for weeks. I'm not having month-long flare-ups, they last a day, maybe, which is usually triggered by excessive stress or a long, hard, strenuous day on my body. I am thankful that this medication was prescribed to me and that I pushed through the hardest part of the first few months and gave it a good chance. At first, my body was a little all over the place, but now I have no real side effects that I know of, and I'm much better for taking it."

• Laf...
• February 9, 2015

Plaquenil (hydroxychloroquine) "I started taking this medication three months ago, November. The doctor told me it would take up to three months to work. After the first month, the fatigue lessened. I didn't want to sleep all day long, I actually wanted to move. Soon after, the occurrence of joint pain also lowered. It still hurts when I push myself too hard and on rainy days, but the pain isn't consistent anymore."

• Anonymous
• May 12, 2011

Plaquenil (hydroxychloroquine) "My rheumatologist put me on Plaquenil for UCTD. Two days later, I started having migraines, fits of crying, anxiety attacks, irritability, feeling very depressed, and almost convulsive. When the doctor took me off the medication, I slept for 15 hours, just getting up to have dinner and going back to bed. This medicine is NOT for me."

• Anonymous
• March 15, 2016

Plaquenil (hydroxychloroquine) "I was on this medication for one day when I began to have severe vomiting 30 minutes after taking it and stomach bloating and uncontrollable gas. By day six, I called my doctor to tell him I had bilateral muscle weakness in my legs and could hardly walk a straight line without feeling like I was going to fall down. My doctor stopped the medication after six days when I presented with a known severe adverse side effect of this medication: muscle weakness and loss of coordination."

• Tor...
• October 6, 2018

"Hydroxychloroquine has been a miracle drug for me. I've been on it for 6 years. I first got sick in 2010. I struggled with strange, debilitating symptoms for 2 years before being put on Plaquenil by a rheumatologist. I had a high positive ANA (antinuclear antibody test), positive rheumatoid factor, and low complement levels. My symptoms were Raynaud's, extreme sensitivity to cold, all-over body pain (muscles, joints, skin, tendons, everything hurt), GERD, migraines with aura, heart palpitations, nausea and diarrhea, flu-like feelings, fatigue, dizziness and weakness, and tingling and numbness that would come and go. I was barely managing to function. I was put on Plaquenil finally when my rheumatologist looked at my nailfold capillaries-they were abnormal in a way that suggested connective tissue disease. Within 3-4 months, I started to feel better. I got better and better over the next 6 months. By the time I'd been on Plaquenil for a year, I felt almost normal again with only the occasional bad day."

• lzz...
• February 28, 2016

"I had my doubts, but after 3 months, I found myself getting up and moving around. Within the year, I was off the couch. Prior to starting this medication, my days were difficult. I was constantly fatigued. Going to work was so difficult, so I worked 12-hour shifts on the weekend (I'm a nurse). I would rest all day Friday to prepare myself and all day Monday to recover. I lived this way for more than 10 years until diagnosed with UCTD. Now I've been on Plaquenil for 6 years, and I feel like I have a life again. I worked full time for the past 5 years."

• 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.)"

• Luc...
• Taken for less than 1 month
• August 9, 2017

Plaquenil (hydroxychloroquine) "I took this medication for only 3 weeks for Mixed Connective Tissue Disease. (Diagnosed 15 years ago, medication-free for the last 11 years). My only active symptom at the time was Raynaud's. I really did not want to take any medication and felt that improving my lifestyle/keeping warm was worth a try, but my (new) rheumatologist pushed it and said he would discharge me if I didn't take it. All my other tests (lung function, heart scan, bloods) were fine. What a mistake. It did not help my Raynaud's but did cause huge hives from my neck to my ankle. My last dose was May 25th, it is now August 9th, and these unsightly hives continue to come and go. With such a long half-life (up to 50 days), it will take over 18 months to fully eliminate it."

• Amb...
• Taken for 1 to 6 months
• September 15, 2015

Plaquenil (hydroxychloroquine) "I have been taking Plaquenil for over 6 weeks to treat autoimmune hair loss. My hair and itchy scalp have not improved at all. In fact, it was even worse for a few weeks. Now I'm getting sores all around my eyes, with a cyst on my eyelid and an inflamed blood vessel. I called my rheumy today to ask for a switch. I'm very disappointed because it seemed like the best out of the bunch for side effects."

• CLa...
• March 30, 2020

Plaquenil (hydroxychloroquine) "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."

• Sea...
• Taken for 10 years or more
• June 20, 2017

"This medication has given me a normal life for the past 11 years. How do I know? I was just recently taken off the drug and have become even sicker than before I was diagnosed. My quality of life went from an 8 to a 2 in just a couple of months. I highly recommend this medication. It has truly been a miracle pill for me. I'm back on it and waiting the 3-4 months it takes to work (at least that's how long it took the first time). I have a great ophthalmologist who has assured me he will catch retinal damage before I will ever notice a change in my vision, so as far as I'm concerned, I want to stay on Plaquenil until I'm forced off it."

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

"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."

• gre...
• Taken for 6 months to 1 year
• September 25, 2020

"It took 30 years to finally get a diagnosis of UCTD. My rheumatologist trialed me on hydroxychloroquine. I didn't have high hopes, as I generally react badly to pretty much all medications. He said it would take at least three months to see if it worked for me. But lo and behold! I noticed a difference only a couple of weeks in. Now I'm on 200 mg 2x/day and have been taking it for nine months. It's a total game changer. I am getting my retinas checked by a specialist once a year."

• Lif...
• September 23, 2020

"This medication, hydroxychloroquine, has been an absolute lifesaver for me! I was diagnosed with undifferentiated connective tissue disease 10 years ago. I've been taking Plaquenil for 8 years. I take 400 mg 5 days per week. It took about 4 months to build up enough in my system to start working. By the time I had been on Plaquenil for a year, I felt back to normal. This is a drug that takes time to work-be patient and don't give up too early. I get a full eye exam annually and also do a visual field test (peripheral vision) every 6 months. I went off of Plaquenil for about 6 months in 2018, and all of my symptoms came back with a vengeance! I will NEVER stop this medication again unless my doctor advises me to for a serious medical reason. Fortunately, I have no side effects from it. I have the occasional bad day where I feel achy, tired, and unwell, but most of the time I feel normal and fine with no pain or other debilitating symptoms."

• EBa...
• November 21, 2020

Plaquenil (hydroxychloroquine) "George: Just read your review and had to reply. Hope you read this. I’m the same age; similar experience with symptom progression over a 10-year span. But with AS, I got a few different opinions (also HLA-B27- but very high positive ANA). My rheumatologist still wanted imaging of my sacroiliac joints. 10 years of doctors never suggested it. It’s different than just your spine/pelvis. If you haven’t had it specifically, look for a rheumatologist who works with a radiology center. Because I’ve had an MRI to check progression; the report came back clean. Luckily, had a rheumatologist who said no way, got the disc, and said it was the worst MRI ever. If it had been the first and trusted report, I would have never known I had damage. Didn’t respond well to anti-TNF (for AS). 3 years ago was diagnosed with UCTD/EDS Hypermobility Type. If you haven’t had a rheumatologist check you for that, find a new one. Changed my life. No cure, but finally have the right treatment team. I really hope you read this and it helps. If you have any questions, let me know; I would love to help."

• JCa...
• Taken for 2 to 5 years
• October 4, 2019

"I’ve been taking 200 mg hydroxychloroquine a day for 2 years now. Can’t tolerate a higher dosage because I get diarrhea, but even with the 200 mg, I feel much less tired! Kidneys and eyes are regularly checked and are fine."

• Sta...
• Taken for 1 to 6 months
• December 3, 2018

"Starting experiencing improvement after a month of taking it. Six months in, and I have significant improvement in my quality of life. Fewer flares, and I can play with my grandchildren (I'm 54). I still have the occasional flare and some body ache, but I can work with it. Other than the initial side effects of nausea and diarrhea (only lasted a couple of weeks), I'm good to go."

• Sha...
• Taken for 10 years or more
• September 4, 2017

"Been on it for 10 years. Flares are minimal. I take prednisone also, and since I'm not supposed to take other NSAIDs or aspirin with that, I stick to my pain med and muscle relaxer only. It took a few years to realize I needed the full dosage and to stay consistent. Plaquenil generic saved my life and got me out of bed. I have multiple autoimmune diagnoses: Lupus, undifferentiated connective tissue disorder, CREST, scleroderma, dermatomyositis, Sjögren's, Hashimoto's (which is leukocytic thyroiditis), fibromyalgia, chronic fatigue, migraines, and so many more. I have controlled pain much better with a very low carb diet, keeping weight down, and staying away from gluten, refined sugar, or any type of aspartame. If I eat bread or sugar, I hurt worse."

• Anonymous
• September 24, 2011

"This medication has really improved my quality of life. It took a while to start working, but after 3 weeks or so, my pain decreased dramatically, and the malar rash is completely gone. Make sure to take this medication with food to avoid nausea."

• Jay...
• Taken for less than 1 month
• May 30, 2019

"I took this medication one time for UCTD (undifferentiated connective tissue disorder), and the side effects are horrible. Nauseous, and no appetite for the whole day. I fell asleep for 3 hours, and I woke up with a terrible headache, and the aching in my hands and body is worse. Prior to this, I started a gluten-free diet with vegetables and fruits and herbal remedies, and I was actually able to start working out in the gym. I still have pain, but not like I experienced on this medication. By reading the experience of others on here, I see how much they improved, so I guess some people do well on it and some don’t."