I started 200mg/day of plaquenil on May 2th. Was told by the doctor that the med, should help me control the systemic arthrirts(Sjogren syndrome /lupus) after 4-6 months of using the med. So far I have no more energy than when I first started and has developed neuropathy which I have just found out from Web MD that this neuropathy is one of the side effects of this med! MY doctor does not want me to stop. Saying that by stopping this it would take another 6 months to build up the benefit. But so far if gave me no benefit! Please help. THanks.
What is the correct way to discontinue use of plaquenil?
Question posted by awl on 12 Nov 2009
Last updated on 22 May 2023
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.
10 Answers
Lysistrata47
25 Sep 2021
I am a white, 74 year old female. I have been on Plaquenil for horrible scalp condition that they can't diagnose (9 dermo consultants). It is like psoriasis but greasy and nothing to see on scalp except that the hair is all matted and 'felted' over from a generalised exudation. I have been on the drug for 8 weeks and it is making it much worse. I take 200 am and 200 pm but cannot put a comb through my hair.
However, my arthritis - left knee in particular - has all but vanished!
I think I will have to cold turkey it because I can't sleep (head hurts sleeping on it!)
Anyone else going nuts (sorry!) with this? I would love to hear across all ethnic groups, please. Have tried everything including black soap, all the usuals (cocoa nut oil and vinegar-with-the-mother etc). Miserable.
charlotteluttrull
22 May 2023
I want to stop mine too. I use it for APS. It was a wonder drug. Now I'm having a racing heart. Plus, severe ringing in my ears, swollen legs too. This just started this week. Now I'll get so sick again
Texasaaa
27 April 2020
Great response LittlelionGirl!
Just the fact that our society is getting older and we have all these age related diseases now the Dr.s will never Run Out of patients.
Common sense goes a long way if one has any.
Good luck everyone.
Healththrottle
16 June 2018
As soon as I went into debt while seeing Dr. John Bergman - thereafter my 60 treatments, kind of did my own thing to avoid future debt related situations (including his). Then I discovered an even better doctor - Dr. Brooke Goldner. She had the worse case of SLE and found a way to cure her Lupus. Her approach is fascinating. She also has a book, got mine off Amazon. She also has FREE webinar classes but you also have to register (easy and free). I'm all about being holistic and I don't believe and totally against medication. Like in Dr. Brooke Goldners book "medicine derives from the rainforest, not in a form of a pill". If the symptoms like joint pain, she teaches step by step on getting rid of it and being able to conceive. Doctors don't want you knowing about the cure because they would be without jobs. Doctors find the easy route with prescriptions.
Little did you know they never say when to stop or if its silently affecting you internally so doctors are essentially poisoning their patients because right, theres a specific blood work especially made for "Lupus" like there is for vitamin d deficiency and diabetes. As a Lupie, I find my own route on what foods to stay away from. All in all, listen to your gut, you do you and not what everyone else advises because at the end of the day, no one else is paying those bills (if any) but you. Advice is a plus, but health should always be first - or at least when I was first "diagnosed" 12/24/14 - good luck to you - check Dr. Brooke Goldner out! -"Goodbye Lupus" is the book and she also provides her personal cellphone number because shes that passionate about helping others.
Healththrottle
16 June 2018
As soon as I went into debt while seeing Dr. John Bergman - thereafter my 60 treatments, kind of did my own thing to avoid future debt related situations (including his). Then I discovered an even better doctor - Dr. Brooke Goldner. She had the worse case of SLE and found a way to cure her Lupus. Her approach is fascinating. She also has a book, got mine off Amazon. She also has FREE webinar classes but you also have to register (easy and free). I'm all about being holistic and I don't believe and totally against medication. Like in Dr. Brooke Goldners book "medicine derives from the rainforest, not in a form of a pill". If the symptoms like joint pain, she teaches step by step on getting rid of it and being able to conceive. Doctors don't want you knowing about the cure because they would be without jobs. Doctors find the easy route with prescriptions.
Little did you know they never say when to stop or if its silently affecting you internally so doctors are essentially poisoning their patients because right, theres a specific blood work especially made for "Lupus" like there is for vitamin d deficiency and diabetes. As a Lupie, I find my own route on what foods to stay away from. All in all, listen to your gut, you do you and not what everyone else advises because at the end of the day, no one else is paying those bills (if any) but you. Advice is a plus, but health should always be first - or at least when I was first "diagnosed" 12/24/14 - good luck to you - check Dr. Brooke Goldner out!
littleliongirl
4 Aug 2018
I made an account just to respond to this, because that’s how irritated I am with this response. Doctors don’t want you knowing about cures because if you did they would be out of a job? Wow, wish my doctor mother had just told me the cure to lupus rather than crying her eyes out the day I got diagnosed. I guess my sister and my brother-in-law and my parents’ best friends are all lying to me too. I guess they must enjoy watching me suffer awful joint pain while we try to find the right combination of medicines for my disease. Huh. Crazy, because I thought they loved me.
Or maybe it’s that the medical community is trying its best but sadly, they don’t have the cure for every disease yet. They work with what they’ve got to make sure you don’t die, and sometimes that means trying drugs that don’t always end up working well for you. I’m gonna trust them over some internet quack promoting a book that tells people not to treat an autoimmune disease that can be fatal.
Pattijb
2 Aug 2017
I can't answer that specific except gradual because I got off off recently and had headaches doing so. I think it caused more problems than it helped. I was glad to have it a first, but my hair has been coming out steady for 8 yrs among other problems. I wish that I would have sought natural alternatives sooner. I am doing that now and will never ever take it again.
bluebird6156
3 Jan 2018
I hope you are well... Did your hair start coming back in when you stopped Plaquenil? Thank you.
rachael777
10 May 2011
I started taking plaquenil seven years ago and i feel that it has really helped me, I
feel much better. I know that it helps with the joint pain but it also is bad for other
parts of your body. Lately i feel like my eye sight is getting really bad. I feel it can help you but it can also hurt you. I have stopped taking this medication one week ago. In the beginning i felt like my joint were aching but, i knew that if i would not give into the pain i would get better. well so far i feel good . i want to know if there is anyone that has expirence the same thing i did. I never had a menstol period while on this medication and now that i stopped i am getting my period again. Has anyone expirenced this. Please let me know!
Thanks
msfabtstone
15 June 2011
i have diagnosed with lupus sle for 12/13 years and im on steriods which have basically destroyed me i just had surgery and the had to remove 2 inches of my instestines, im also on plaquenil it has mad my eyes very dark some dark spots on my face, my eye sight changes every time i go for glasses my hair fell out not sure if its due to the lupus itself or the meds. but when i stop taking the drug the arthritis flares up really bad like it's doing now so i started back taking them today i can barely walk my feet hurt so bad. I'm a black female. would love some feedback on race, and afflictions with this disease thanks.
lashonep
30 Nov 2016
I am also a black female. I was diagnosed with Lupus SLE and Rheumatoid Arthritis in 2008. That was the most stressful y at of my life. Imagine waking up one morning from a nights sleep and you are unable to move or raise yourself up out of the bed. Then you started noticing your joints are aching and you are unable to pump gas or write with a pen or pencil because your finger stiffen and cramp up. That was me but luckily I found a great doctor that is very thorough, caring and honest. My very first Flare and worst Flare to date caused a 3 month stint in the hospital causing pancreatitis and the 2nd stemmed from multiple books or cyst forming on my arms sides and under my breasts which all had to be surgically removed. I thiught it was over for me. I had just gotten diagnosed. But my doctor works out a therapeutic plan with the plaquenil and methotrexate and it's been all good.
Don't get me wrong you can't live with this disease and not have aches and pains with some days being worst than others but it's worked for me. I feel very fortunate. I was weaned off the prednisone since 2012 and that's a blessing. I do suffer from small flares periodically and hair shedding. The folic acid is supposed to help with that. For me it's mind over matter. I refuse to let it beat me. Stay strong.
NODAKMICKEY
8 Dec 2016
Has anyone tried giving up meat? All meat including chicken? I was on prednisone, plaquenil, and methotrexate. Once I gave up meat the first to go was prednisone, six months ago. At this point I am trying to give up methotrexate, as it gives me horrible chest pains. Finally I want to quit the plaquenil. I have systemic lupus. Was diagnosed in 2010. I am a 49 year old male.
lupy girl
2 Oct 2010
Hi
I just joined the site this evening. I was diagnosed with SLE Lupus- three years ago - after many years of being incorrectly diagnosed with numerous other diseases. I have been on plaquenil since May 15, 2007, the day I was diagnosed. My dosage is 800 mgs per day- and it has to be the brand name-only. Additionally, I take 600mgs ( 6 x a day) of Topamax daily for the migraines that were destroying my life as prescribed by my neurologist. Every 3 months, I have botox injected into the back of my head (approximately 15-20 injections during one visit) and neck to freeze the nerve endings. This helps reduce the strenght and intensity of the migraine headaches. I also take a daily vitamin, fiber com, calcium pill, baby aspirin, cymbalta (2 x a day), mobic (2 x a day) an anti-inflamatory. I was doing fairly well for a while. The weather would get to me, not resting enough or allowing myself to get to stressed.
I have just had the worst flare up since being diagnosed. Now in addition to all of the above medications, I have been prescribed: Tizanidine, Methadraxe, and Folic Acid pills. The Methadraxe is a form of chemo!.
It took a really long time for me to feel better, once I was diagnosed back in 5/2007. I started taking the plaquenil and wanted instant relief. IT DID NOT HAPPEN. It took several months for me to even feel somewhat better.
It took a long time for me to receive the correct diagnosis. I had to tell myself that it would take my body sometime to adjust to the medication. The Lupus was permitted to wreak havoc - it was a long battle for the plaquenil to fight.
I am not a great patient. I miss doctor's appointments. I forget to take my medication. I work in law enforcement. I think I am "Barbie SuperFedMOM. Imagine trying to mend the body of this "invincible ego nut". The doctor had to call my husband to make me take a week off to rest. i love the excitement of my job- the stress- the rush. I work crazy hours. Not good for the body, soul, or family. When I am home all I do is crash and sleep- can't move. Now- I am on the strongest medication.
I tell you this because- here I am- my early 40's with a beautiful daughter, loving husband, two great homes (one on the beach) and I am now sicker than ever before. I am working from home several days a week. I am unable to go out in the field- with my partner afraid I would be a danger to him. Find myself sleeping all the time. In such pain- it's unbearable. My famous blonde locks of hair- is now short and thin from the medication (grateful it did not fall out all together). Spent the majority of the summer weekends in bed unable to go to the beach with my husband and daughter- as I slept or stayed at home on the deck waiting for their return. Needed to avoid the sun. Great living at the beach- when you have to avoid the sun.
So here is my advice- give the medicine time to work.
Make sure you get plenty of REST.
Once you start feeling well- start to do light exercises.
TAKE CARE OF YOURSELF AND FAMILY FIRST.
GOOD LUCK
msfabtstone
15 June 2011
i just found this site hope to hear some feed back i only take 400 mg a day 800 sounds like a lot i am a black female i was diagnosed with lups 12/13 yrs. ago and it is HORRIBLE i just had surgery on my intestines they took 2 inches out and I am very depressed right now hope to get some feedback on your progress ttys
ruthandsid
25 June 2017
I have found a wonderful doctor that is on you tube his name is John Bergman & he says that you can heal arthritis with natural foods and excercize. I have already eliminated alot of medication, I was on methotrexate 20 mg,methylprednisolone 4 mg, Lisinopril gabapentin 300 mg,folic acid 2mg,Donepezil 5 mg, because I was getting early on set Alzheimer's, drinking 8-10 glasses of water a day now,plaquenil 200 mg,celebrex 200 mg,Axid 150 mg, topamax 50 mg,all this medication was making me have brain fog,I couldn't think clearly, so I started to lower the doses & drink more water and walk, I am feeling much better Ihave cut the topamax in half wonderful doctor listen to what he says,I go to the chiropractor and I'm doing great!!!
jakefreedom
14 April 2010
Neuropathy can also be caused by the Lupus itself. I have them too. I have SLE, Sjogren's APS, Hemolytic Anemia, Heart disease and now the neuropathy in my right leg. It takes a really long time for the Plaquenil to kick in. It may even take a year. Mine didn't start working until I was on it for 8 months and I take more than you do. I take 200 mg twice a day. I initially started at 800mg a day then dropped it to 400 mg a day. Please don't give up, you will have good days and bad days. Try and do some sort of exercise, even though I know it's very hard to motivate yourself, maybe just a little walk around your home. I just walked onto my porch and looked at the nice flowers starting to pop up. I then walked down around my lawn to smell them all and then found myself pulling a few weeds and brushing away dead leaves. Then I had to lay down, but I did feel better that day.
yerkillinme
28 Jan 2010
Please don't stop your plaquenil until you are sure it is the right thing to do and in your best interest. I am on plaquenil but also experience some of the same things you do. There are other meds that can help with what you are experiencing, and if your doctor didn't address that then I would seek out a second opinion... or maybe another doctor if you're not comfortable w/your current one. Plaquenil is a 6-weeker as far as the benefits are concerned, but it would be more dangerous to stop if you spend a lot of time outside and if this were the summer. If you're gonna experiment, I went off it cold turkey as it didn't hurt to do it that way, but you better get back on before the summer or you could experience a flare-up. BUT, I AM NOT EVEN CLOSE to being a doctor, AND I don't know how severe your Lupus is. But when my doc let me try I didn't have a weaning process (I was on 200mg am and 200 pm). I'd rather see you get a second opinion, but I'm telling you what I know because we all do what we want to do in the end.
suzanne66
25 Nov 2009
You are probably best to get a second opinion from another medical professional before you decide to stop the Plaquenil.
Related topics
plaquenil, sjogren's syndrome, systemic lupus erythematosus
Further information
- Plaquenil uses and safety info
- Plaquenil prescribing info & package insert (for Health Professionals)
- Side effects of Plaquenil (detailed)
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