I've been on it for 15 years. My vision is being affected, although my retna looks good. I also have periferal neuropthy along with just feeling crappy. Insomnia too. I want off.
Does anyone know if you have to be weaned off Plaquenil? I've been on it for 15 years, for Lupus?
Question posted by Lupie523 on 21 Dec 2015
Last updated on 27 September 2018
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
Answers
Vtl167
2 Jan 2016
I discontinued Hydroxychloriquine seven years and had severe problems with inflammation within 2weeks all over my body especially the pancreas. 11 months later went back on Hydroxychloriquine and all my symptoms disappeared as the meds took effect.
Lupie523
2 Jan 2016
Did you have any symptoms or side effects before quitting. Why did you quit? And are you using it for Lupus? I'm just trying to put it all together.
Vtl167
2 Jan 2016
I had no problems taking Hydroxychloriquine for RA as it stopped the flare up in a short time. Stupidly I thought I didn't need it so asked my doc if I could stop. That's when I became inflamed but not the joints until another flare up 11 months later. I think it keep my acute pancreatitis at bay as well as RA.
Lupus1984
11 Dec 2017
I’ve been on plaquenil for over 20 years and just stopped taking it. I don’t think it has ever helped. I have tested negative on my ANA tests for the last 3 Year’s. Weird because I still have all the pain, plus terrible neuropathy due to autoimmune issues. I’m going to see what happens... my life hasn’t been the same since I’ve had to deal with neuropathy. I have up it into my buttocks which causes severe issues sitting.. Any help would be great!!
jramonell
21 Dec 2015
I don't believe so. I was on the highest dose for a few years when I developed central vision loss. My doctor had me discontinue it immediately, no weaning. He warned that it stays in your system for a really long time so the vision loss could continue to progress. I was fortunate in that they caught the vision loss early so it improved after a year off of the medicine. Best of luck!
Lupie523
21 Dec 2015
Thanks
Related topics
plaquenil, lupus erythematosus, insomnia, sjogren's syndrome, systemic lupus erythematosus, vision
Further information
- Plaquenil uses and safety info
- Plaquenil prescribing info & package insert (for Health Professionals)
- Side effects of Plaquenil (detailed)
Similar questions
Search for questions
Still looking for answers? Try searching for what you seek or ask your own question.