Hydroxychloroquine for Undifferentiated Connective Tissue Disease User Reviews (Page 2)

• Lar...
• June 1, 2019

"I was diagnosed with UCTD and put on 300 mg/day of hydroxychloroquine while simultaneously being weaned off prednisone. Seventeen days after starting it, I noticed a rash the size of a quarter on my shoulder. Within a week, the rash was covering almost my entire upper torso and starting to blister and slough off. I was admitted to the burn unit at the local hospital, where I stayed for a week with Acute Generalized Exanthematous Pustulosis; I lost over 90% of the skin on my body. To treat the condition, my daily intake of prednisone was boosted to 60 mg/day, which eventually gave me Cushing Syndrome, which I'm still recovering from five months later. So if your rheumatologist prescribes it, just make sure you're aware of the serious potential side effects, because mine is not an isolated case... this drug is a known cause of severe cutaneous adverse reactions, and they are life-threatening conditions."

• Bac...
• Taken for 1 to 6 months
• December 11, 2016

Hydroxychloroquine "I took this for undiagnosed non-specific mixed connective tissue myalgia-type issues, and it made the roof of my mouth and teeth ache. I stopped, and the ache went away. I restarted, and the ache came back after a couple of days. Went like this back and forth, and it was definitely the medicine. Also, I started to feel worse while taking it. It could be that the weather is getting colder, and that always makes me feel worse. But we decided I couldn't tolerate an increase in dosage, which was what would have been next on the treatment plan, so we moved on to something else. Still searching."

• 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."

• bik...
• June 25, 2014

"Been on hydroxychloroquine for 2 weeks now, yes, nausea was an issue at first, but easily resolved if you eat first. It has dramatically changed my quality of life. I have more energy, and in a year and a half, I wake with no pain and stiffness."

• Vit...
• June 16, 2017

"I've been on Plaquenil since March 2017 for a recent diagnosis of Mixed Connective Tissue Disease. Prior to that, 13 years of seeing specialists for body aches, total body inflammation/swelling, joint pain, and stiffness - the majority in neck/shoulders/entire back. Body aches increased often after eating. Very painful headaches during the day and at night, headlights of other cars were unbearable. Days just stuck in bed. One day of Plaquenil changed my life - it gave me more energy, eliminated the headaches, subsided inflammation/swelling, nearly non-existent pain! Three months later, still going strong. But being in the sun does bring the pain back. Otherwise, did not experience any adverse effects many mention."

• Azz...
• February 8, 2018

"This medication has helped me a lot. I have undifferentiated tissue connective disease and fibromyalgia. I also take prednisone for occasional flares along with this medicine. I've been on it for 4 months so far, I've been feeling great! I haven’t had any side effects, but I do have my eyes checked as stated by my rheumatologist while on this drug. While on this medicine, please remember to have your eyes checked."

• not...
• Taken for 1 to 2 years
• January 16, 2023

"I was prescribed 200 mg twice a day (total 400 mg) to prevent a flare-up. At that time, the only symptom that bothered me was Raynaud, and I had been like that for 20 years. Six months after taking it, I started having chest pain. One year after taking it, I got my very first big flare-up with pericarditis and water in my lungs, and had to be hospitalized. I stopped taking it against my doctor's recommendation because I still feel that it either caused the pericarditis or at least did nothing to prevent a flare-up. I am OK now (not taking it), and I do believe the pericarditis was a side effect."

• Tug...
• Taken for 1 to 2 years
• September 16, 2018

"I have been on this for at least 1 1/2 years for undifferentiated connective tissue disease (UCTD). I must admit I’m a recovering alcoholic for almost 2 years. I can’t remember when I was first diagnosed and started this medication. All I can say is I wasn’t aware of these side effects, and truly I don’t think I had any, and my health has done nothing but improve. I thought maybe because I quit drinking. I do have to have my eyes checked at least every 6 months."

• Lar...
• September 14, 2019

"I was diagnosed with undifferentiated connective tissue disease (UCTD) in December 2018 and put on hydroxychloroquine. Within a couple of weeks, I started getting a rash; it quickly spread down my body, and within a few days, it started to blister and slough off. I went to a local ER; they immediately transferred me to a burn unit where I was diagnosed with acute generalized exanthematous pustulosis (AGEP). A biopsy confirmed that it was the result of an allergic reaction to the hydroxychloroquine. When all was said and done, the skin on over 90% of my body had blistered up and sloughed off. I was put on 60 mg a day of prednisone to help my skin heal. Eight months later, my skin is healed, but I'm still dealing with the effects of Cushing's syndrome from being on a heavy dosage of prednisone for so long. My new rheumatologist said that hydroxychloroquine wouldn't likely have been effective in relieving joint pain as severe as mine anyway; he said he would have never prescribed it to me in the first place."

• ang...
• February 11, 2015

Hydroxychloroquine "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

"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."

• One...
• December 18, 2016

"I am 54 years old and female. I have taken Plaquenil for only 10 days. Immediately on taking it, my joints have felt like they have a burning sensation. I am tired, and I ache more than I ever have. I am depressed and don't want to go anywhere because I hurt. The reason I went to the doctor was that I have tendinitis in more than one place: ankles, hip, knee, and wrist. I felt better without this medicine. I have been reading it takes a few months to let it kick in. I have been in really good shape, but since I started this, I just lay around and hurt and feel depressed. I am afraid of eye damage and hair loss. I have had the potential for glaucoma for 15 years now because of my high eye pressure."

• Mam...
• July 31, 2019

"My 12-year-old daughter took this hydroxychloroquine for the first time on her birthday for aches and pains in her joints. I found her laying across my bed. I tried to get her to the other room, and she could not even walk. She had no muscle control at all. She had belly pain and no appetite. The muscle weakness is coming in waves. She’ll be okay, and then the next thing I know, she is laid out on the couch and can’t move. I will not be giving her this med again."

• VB ...
• December 28, 2021

"I have been diagnosed with undifferentiated connective tissue disease (UCTD) since July 2021 and was put on hydroxychloroquine. I don’t have the regular symptoms such as joint pain, rash, swelling around the joints, and sleeping a lot, so I’m not sure if my condition is UCTD. Instead, I am experiencing insomnia, burning sensation pain, mainly from my lower back to my thighs, hot flushes, chills, rapid weight loss, and weakness in my body for part of each day. For the first 2 months of taking the medication, pain was all over my body, dizzy, loss of appetite, so I guess it helps slightly with the pain since it's not so bad now and the earlier side effects are gone. It is difficult to rate it because I am feeling just a little better, but I don’t know if it contributes to the drastic weight loss and the GI issues I am experiencing. Dosage: 1st month, 1 tablet every other day, thereafter, a tablet daily—200 mg."

• Anonymous
• Taken for 5 to 10 years
• November 1, 2023

"Hydroxychloroquine mildly helps my UCTD, but I can't say it helps too much. Perhaps it's worth commenting that my rheum considers my presentation to meet the criteria for lupus, but they are waiting to see what happens because I am young. Anyways, I have been on this medication two different times. For the first while, I find great improvement. Then, over time, I start getting debilitating flares again, with swollen joints/lymph nodes, headaches, photosensitivity, etc. It's hard to know what to do given other medications are harsh."

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

"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."

• dew...
• Taken for 1 to 2 years
• December 13, 2024

"I took this medication for UCTD, and I believe it caused suicidal ideation. I was concerned about having it around my young children, and at first, I had vivid nightmares if I took it later in the day, so I usually was not very consistent in taking it. On three occasions when I did take it consistently, I developed a delusion that my life was utterly pointless. I'm reviewing it here now in hopes of helping someone. There are some case studies now that show this as a possible side effect. I suggest having someone close to you look for possible signs that something is wrong, as due to the nature of the side effect, it is difficult to monitor yourself. It probably did help with UCTD, I am not sure. One thing I know helped was making life changes to reduce stress."

• Anonymous
• Taken for less than 1 month
• December 12, 2019

Hydroxychloroquine "I feel extremely depressed yet agitated after I take my dose."

• Ter...
• January 26, 2015

"Was unable to stand erect without pain and experienced constant tissue pain. After being on it for two months, was essentially pain-free and could stand erect."

• Anonymous
• Taken for 1 to 6 months
• November 15, 2020

"I have noticed an improvement in my energy level and not as many rash flare-ups. I have had no bad side effects and have been on it for almost 2 months."

• Mya...
• Taken for 6 months to 1 year
• June 30, 2017

"When taking this medicine, in the first week, I had stomach pains and severe ringing in the ears. It also makes me feel exhausted."

• OEE...
• Taken for 6 months to 1 year
• November 27, 2021

"I can definitely tell that this med calmed my symptoms and actually gave me about a two-month break between flares. Highly recommend."