Author Topic: Have to stop Plaquenil. If you had to stop, what was your experience?  (Read 272 times)

Sweetcheex76

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I did poorly on a basic retinal toxicity test at the Opthamologist's last week. Going to see my retinal specialist for further testing but my rheumatologist said is ok to stop the Plaquenil. Obviously, my vision is my priority but I'm concerned about functioning if the fatigue and joint pain return full blast. The last few days, I've felt very brain foggy and fatigued yet, I'm pretty sure the med is still near full strength in my system. If you had to quit taking Plaquenil, I'd love to know your experience. Did your symptoms come roaring back? Were you prescribed another medication to take its place? The whole situation just adds to the anxiety I already have from all the other stuff going wrong with my body and life. Thanks for your input!
Sjogren's, Trigeminal Neuralgia, Reynaud's, Fibromyalgia, osteoarthritis, ocular rosacea, rosacea, endometriosis, ADHD, anxiety, depression, pre-diabetes.

Plaquenil, Cevimeline, Restasis, Metformin,  Vyvanse, Xiidra, prescription ibuprofen, Vitamin D

irish

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I quit my Plaquenil frequently. When I take antibiotics I get so I can't think straight and figured out that when I went off the Plaquenil I was better. I also have had a couple of episodes of bad Reflux and
GERD and taking my Plaquenil really gave me a bad stomach ache. I quit for several months and my stomach improves and then I restarted my Plaquenil again.

I have been on Plquenil close to 10 years I think and when I do stop the drug for short periods of times I don't notice anything really. It takes a while to get the drug out of the blood stream
When I was off one time for 6 months with my stomach I sure noticed it as my aches and pains started to come back.

When you go see your retinal specialist ask him if there is a chance that your eyes ware not being affected. My DIL is an eye doctor and she said they had learned at meetings that there are some doctors who may be less proficient in identifying the retina problems. There is another condition that is quite similar that is hard to differentiate from the Plaquenil caused issues. Also, the Plaquenil is dose related to weight of the patient and sometimes the lighter weight people could be taking too high a dose. Worth a thought.

Dont panic about this. You have had your eyes checked and are doing the appropriate follow up. The Plaquenil is a good drug but if a person can't take it possibly some of the other autoimmune drugs could be taken. Cellcept, Methotrexate, etc. Discuss this with your doctor if need be. Good luck Irish

vrystaat

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I don't think that Plaquenil helped me in any way.
I also proved to myself that it gave me nightmares. I have had no withdrawal symptoms.
Check these:
https://www.healingwell.com/community/default.aspx?f=29&m=1828842

https://www.ehealthme.com/ds/plaquenil/nightmares/
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage

Skylar

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I?ve been off it for two years now. I didn?t feel any difference once I had stopped. I had stopped briefly a few years ago. This time it was because my doctor had concerns about toxicity because I had been on it for so long.


WhatYouSjo

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I had to go off Plaquenil/hydroxychloroquine about a year ago. The effects were not immediate, but I did notice some trends after a couple of weeks. In general, I felt like there was less of a buffer from symptoms and flares. For example, while on Plaquenil a single bad night of sleep wouldn't trigger a flare, but after going off I have to be more careful to get a good night's sleep or I'll feel it the next day. Joint pain was also a bit more noticeable.

Since then, I have added some other medications and supplements that have helped make up for the loss of Plaquenil.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

janny

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I stopped taking plaquenil a few years ago. I did not notice one tiny bit of difference, so I am glad I made the decision. But, I know everyone is different...so sorry to hear about your eyes, but glad they caught it before it progressed!

Deb 27

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Plaquenil is so subtle, it's hard to tell a difference for me. I have hit and gone back on many times and it's hard to tell a difference for me. If I don't have name brand, it upsets my stomach and that's why I quit. I am going to see if I can get it from Canada.  However, one positive plus for me is that it lowers my blood sugar some and that's a good thing since I now have type 2 d.
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

Jenny

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I went off it a few years ago when my Rheumatologist moved away. I noticed no adverse effects at all. Because of this, I never went back on it.
63 year old female with back, shoulder, neck and knee pain, dry mouth, losing teeth, dry sinuses,Blood test positive for Sjogrens. Fibromyalgia, Osteoarthritis .
Maloxicam, Lisinopril, Norco, misc.vitamins
4 discs in low back fused. Shoulder replaced 2015 & 2017 Need knee replaced.
4 hand surgeries

Sweetcheex76

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Thanks for everyone’s input. I really didn’t think that Plaquenil was helping that much. I’ve been off it a week but I had knee surgery about 6 weeks ago and I was only taking it sporadically in that time. Since Sunday, I have felt so brain foggy and fatigued. I just want to lay down all day. My joints are killing me. Maybe I’m just having a flare but I always have distinct cues that I’m getting one and they didn’t happen. Thought it would take a while for the plaquenil to leave my system but since I didn’t take it all the time in the last month, I feel the effects sooner.
Sjogren's, Trigeminal Neuralgia, Reynaud's, Fibromyalgia, osteoarthritis, ocular rosacea, rosacea, endometriosis, ADHD, anxiety, depression, pre-diabetes.

Plaquenil, Cevimeline, Restasis, Metformin,  Vyvanse, Xiidra, prescription ibuprofen, Vitamin D

SjoGirl

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I tried Plaquenil twice with adverse effects both times so I had to stop. My disease progressed and my pain did not increase but was persistent and it was more than uncomfortable.

I have been taking Imuran for about two years and it has proven quite helpful. I also take Celecobix for pain though have cut back a bit on it because during the summer I move more and typically don't ache as much.

I should note that I have OA and RA as well as SjS so I may be the exception in this group of respondents.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.