Skip to main content

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

Brand names: Plaquenil, Sovuna

Hydroxychloroquine has an average rating of 6.2 out of 10 from a total of 40 reviews for the off-label treatment of Undifferentiated Connective Tissue Disease. 55% of reviewers reported a positive experience, while 33% reported a negative experience.

Reviews for Hydroxychloroquine

  • Baco
  • Taken for 1 to 6 months
  • December 11, 2016

Plaquenil (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."

3 / 10
Was this helpful?YesNo
15 Report
  • Kiki
  • August 16, 2016

"Not sure what I have. High Anti-ccps. Started with left hand finger & joint swelling that did not go away with some joint knuckle pain. Then having some knee and ankle joint pain in mornings that would go away by afternoon. Stiff neck below the skull area to neck spinal area.I would get occasional calf and foot spasms. Muscle weakness and strength gone. Once I started the durg I felt like drug was doing nothing but giving me undesirable side effects. The nausea lessened with time along with the feeling of loss of balance. I felt like my brain was in a fog for quite a while & my energy level is lower with some fatigue about 1/2 hour after taking drug and always with food. These side affects became more tolerable. 17 weeks before improvements"

8 / 10
Was this helpful?YesNo
15 Report
  • angel...
  • February 11, 2015

Plaquenil (hydroxychloroquine) "For the past 2 years I have had itching on my head. Can be any area of scalp. None on face. I take 50 mg of antihistimine every day, just to keep it mild. But it doesn't stop it. No redness, no dry scalp."

9 / 10
Was this helpful?YesNo
16 Report

Frequently asked questions

  • biker...
  • 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."

10 / 10
Was this helpful?YesNo
17 Report
  • Larry
  • June 1, 2019

"I was diagnosed with UCTD and put on 300 mg/day of hydroxychloroquine while simultaneously being weaned off prednisone. 17 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 5 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."

1 / 10
Was this helpful?YesNo
10 Report

Are you taking this medicine?

  • Vitamin...
  • June 16, 2017

"I've been on Plaquenil since March 2017 for recent diag of Mixed Connective Tissue Disease. Prior to that 13 yrs of seeing specialists for body aches, total body inflammation/swelling, joint pain, & stiffness - majority in neck/shoulders/entire back. Body aches increased often after eating. Very painful headaches during the day & 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."

Was this helpful?YesNo
13 Report
  • Azzure
  • 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 been on it for 4 months so far I 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."

10 / 10
Was this helpful?YesNo
12 Report
  • Larry
  • 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 60mg a day of prednisone to help my skin heal. 8 months later, my skin is healed but I'm still dealing with the effects of Cushings 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."

1 / 10
Was this helpful?YesNo
7 Report
  • Kat
  • September 19, 2019

"I took this for 2 weeks for Systemic sclerosis. Then the swelling of lips, feet, 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."

8 / 10
Was this helpful?YesNo
6 Report
  • One...
  • December 18, 2016

"I am 54 years old and female. I have taken Plaquenil 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 because 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."

2 / 10
Was this helpful?YesNo
8 Report
  • Tugars
  • 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 quite drinking. I do have to have my eyes checked at least every 6 months."

8 / 10
Was this helpful?YesNo
6 Report
  • not...
  • Taken for 1 to 2 years
  • January 16, 2023

"I was prescribed 200mg 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 a pericarditis and water in 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."

1 / 10
Was this helpful?YesNo
2 Report
  • Mamaof
  • July 31, 2019

"My 12 year old daughter took this hydroxychloroquine FIRST time in her birthday for aches and pains in 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 ok and then next thing I know laid out on the couch and can’t move. I will not be giving her this med again."

1 / 10
Was this helpful?YesNo
4 Report
  • VB Ja...
  • 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 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 am experiencing . Dosage — 1st Month 1 tablet every other day thereafter a tablet daily—- 200 mg"

Was this helpful?YesNo
1 Report
  • Mctd
  • 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 Dr 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."

5 / 10
Was this helpful?YesNo
0 Report
  • 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."

6 / 10
Was this helpful?YesNo
0 Report
  • Anonymous
  • Taken for less than 1 month
  • December 12, 2019

Plaquenil (hydroxychloroquine) "I feel extremely depressed yet agitated after I take my dose."

1 / 10
Was this helpful?YesNo
23 Report
  • 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"

9 / 10
Was this helpful?YesNo
7 Report
  • Terry...
  • 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."

9 / 10
Was this helpful?YesNo
14 Report
  • Myami
  • 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."

5 / 10
Was this helpful?YesNo
7 Report
  • 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"

8 / 10
Was this helpful?YesNo
1 Report

Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.