Anxiety and Plaquenil : Has anyone experienced mood... - LUPUS UK

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Anxiety and Plaquenil

Onslow315 profile image
36 Replies

Has anyone experienced mood changes/anxiety/depression while taking Plaquenil? I started on plaquenil July 2014. Last several months, I have been struggling with anxiety. On a whim, I did a search for plaquenil and anxiety. I was shocked to see that anxiety is a side effect!! Maybe I'm not crazy after all. Does anyone have similar story to share?

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Onslow315
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Suzie profile image
Suzie

If it helps I have been taking it for a few years now, with no problems at all. I have had problems with anxiety over the years. It was related to flare ups each time. Very scary too! But nothing significant since I have been taking the planquenil.

It will get better. For me it's a case of keeping out of the sun, this was my trigger for the flare ups and hence the anxiety. So talk to you Rheumy/ nurse specialist and get the support you need.

Good luck.

kimc profile image
kimc in reply toSuzie

Do you take Plaquinel and anxiety pill too? Some one says that they are working together to control the flares, but I'm not sure if it's the case.

Onslow315 profile image
Onslow315 in reply tokimc

I don't take any anxiety pills.

Suzie profile image
Suzie in reply tokimc

No anxiety taken as it only happens now on very rare occasions for just a couple of hours at most. I recognise it and know what it is and that it will pass.

If you are struggling on a day to day basis talk to your Gp see if he/she can get you some CBT? It may help if unrelated to the meds.

Rivcuban123 profile image
Rivcuban123 in reply toSuzie

I take 200mg. of Plaquenil a day for lupus. My lupus has improved but my OCD is through the roof. I get so depressed because I am doing compulsions (routines and checking) many times a night and I'm not getting the rest I need.

Onslow315 profile image
Onslow315 in reply toRivcuban123

Hi,

I really don’t think the Plaquenil causes anxiety. I think that there are other factors that we deal with related to our illnesses that create anxiety. For example, we over think the illness and ruminate the situation we are in. This leads to other areas of our life suffering. I suggest that you really try to relax more. Focus on positive things. If you are spending a lot of time ‘researching’ Dr Google, stop doing that. Remember, OCD is really just thoughts. Our mind tells us to do things that are unnecessary. We need to turn that off. I started yelling out loud to turn it off. I’d be alone in my car and it would start. I screamed out loud “Shut up!! Stop!!” I’d do it at home too. I think it really helped. I met with a psych student for several months. She really helped me. One thing she said to me that really helped. “You are walking through the store and you see grapes. You tell yourself, ‘I like grapes’. You move on and don’t think of it again. It doesn’t impact your life forever. It doesn’t result in anyone treating you differently. It is just a thought. It is there and gone. Just like other ‘thought’ we have. They don’t have to stay with us. They are all just like the grape example.”

Dumb thing, but for some reason really helped me understand how our minds work.

Wishing you all the best :)

Rivcuban123 profile image
Rivcuban123 in reply toOnslow315

Thank you so much for the reply and the great tips. My OCD is better and I'm in the process of surrendering. My compulsions are less and I'm sleeping much better. Like you said, I need to set aside my compulsions by "putting them aside and getting to them later". By the time "later" comes along my need to do the compulsion has subsided. Again, thanks for the kind and helpful response.

chrisj profile image
chrisj

Never known plaquenil to cause anxiety in the years I've taken it, but I have suffered from anxiety attacks as they were known back in the 60s..

Might be worth having a word with someone :) I agree with Suzie

Maya23 profile image
Maya23

I only took it for 2 weeks - and couldn't handle the anxiety it triggered in me along with a very nervous stomach. I stopped taking it.

Onslow315 profile image
Onslow315 in reply toMaya23

It is a horrible feeling. Did you discuss with your doctor? If yes, what did he say?

Maya23 profile image
Maya23 in reply toOnslow315

He just accepted what I said and offered me other drugs. I had an even worse time with steroids so I don't take them either. I am now trying LDN but I've only just started it.

newjobplease profile image
newjobplease in reply toMaya23

Do you remember how long the anxiety lasted after you stopped taking the drug? I quit a couple of weeks ago because of the panic attacks and I can't wait for them to stop. I only took a few doses.

Maya23 profile image
Maya23 in reply tonewjobplease

I think it subsided after a week or two. I remember breathing a sigh of relief!

irishgirl13 profile image
irishgirl13

I was just about to write a post on about this then i saw this post, iv been on plaquenil for about 4 years and looking back about 2 years r more my moods have been all over the place one day im fine and happy next day (like today) all i want to do in hide in my bed and cry, is this a lupus thing r am i depressed? :/

Onslow315 profile image
Onslow315 in reply toirishgirl13

Hi,

I have ups and downs too. I'm taking it for RA. The anxiety is horrific. Get feelings that life is pointless. I've had crying attacks too. I considered that this was depression. I talked to therapist about it. They said not depression. I was glad because I didn't want another drug. You should talk to your doctor about this.

Wishing you happy days :)

mariearmstrong profile image
mariearmstrong in reply toirishgirl13

could be a number of other things. maybe hormone changes, maybe mood disorder, maybe huge stressful life that needs to be cut back. not saying you cant blame every single uncomfortable thing in life on lupus, but lupus is not the entire you. menopause is a wild ride thru hell with or without lupus, cancer, grief, indigestion, bee sting - check for other issues as well. and don't let your dr just pass it off as lupus too, as many do ignore lots of unrelated things, as well as related things. keep a journal, see a therapist, decide for yourself what is causing it.

victoriaserwinski profile image
victoriaserwinski in reply toirishgirl13

You could be many things!

sophiecr profile image
sophiecr

I have never had anxiety in my life but learned the meaning of it with lupus. my doctor prescribed Lexapro, 10 mg a day and no more anxiety. I am now better equipped to handle the flares with a bit more acceptance. Lets face it, lupus is a life changer and we need to deal. I had problems with Plaquinal, but upon researching, it is the best drug for us so I stayed with it. Zero problems now...patience! ( been on cortisone drops for over a year...started at 16 mg day and have now tapered to 2 drops, or 2 mg. the nice thing about drops, you can control your taper very slowky.

Onslow315 profile image
Onslow315 in reply tosophiecr

If this anxiety is from the drug, I have to stop. It is ruining my life :(

kimc profile image
kimc in reply tosophiecr

Sophiecr, are you on plaquinel and lexapro? and you say they're working for you...

What's the cortisone drops and taper are you talking about...I don't quite know about them?

sophiecr profile image
sophiecr

Yes, I take 400 mg Plaquinal a day, heart and blood pressure medicine plus Lexapro for the anxiety and low moods we get when in a flare. The cortisone I take is a corticosteroid liquid called Zamen drops ( here in Latin America) but available world wide. My rheumatologist recommended drops rather than the standard pills for more flexability. When I reduce the amount of cortisone I take too rapidly, it triggers a flare. My doctors have me lower one drop a month, am just about off it after 15 months of cortisone.

I have nerve involvement and essential tremor, so before bed I take a Primidone tablet and lovely Rivotil drops (again for dose regulation). My neurologist prescribed these for tremor but he noted many lupus patients have trouble sleeping and the Rivotil give me a solid 8 hours and calm demeanor. Took a while to get the right mix....nice docs.

victoriaserwinski profile image
victoriaserwinski in reply tosophiecr

I have been on prednisone for 11 years now. Be careful of what they give you and don’t tell you the effects of her being on prednisone for a long time. I may never be able to get off of it, zone that your body produces can no longer process it after you have been on prednisone for eight years.

mariearmstrong profile image
mariearmstrong

dr gave me an anxiety pill for under the tongue. I take it before bed and it also helps me to sleep. balances out the steroids and im guessing, the Plaquenil, because I had weird issues before with Plaquenil and this time I don't. I know they can be addictive so im careful, and I respect them, I try to skip if I can, but between anxiety from pills helping me to live better, and addicted to nerve pills, I choose all the above and lead a calm life

Onslow315 profile image
Onslow315 in reply tomariearmstrong

Hello,

I started on Zoloft about 6 weeks ago and it has helped me a lot. I also am listening to a meditation recording at bedtime and have had some therapy which provided 'tools' to help me with my thoughts. Doctor said that the therapy + meds provides best results.

I asked Doctor if my anxiety could be due to Plaquenil. She did not think so. I read about so many people having anxiety while on it. Guess we'll never know for sure.

Thank you for sharing your experiences.

Wishing you good health and a Merry Christmas.

Regards from sunny Florida :)

Amy

Cheech1 profile image
Cheech1

I have only been on plaquenil a few weeks and I was just telling my husband this morning that I am having slot of anxiety the last few days. I feel nervous all the time. Like something bad is going to happen. Shaking hands. I was a do suffer from high anxiety but have had it under control for years with effexor. Not any more apparently.

M2323 profile image
M2323

Yes!!

I feel out if whack ... super anxious and hyper vigilant since I've been on hydroxychloroquine

(Plaquenil). I asked Them if could be med. Said unlikely.... then I got second opinion and come to find that it is very possible!!

I thought I was going crazy.

Am on Zoloft 25mg for 12 wks now.... waiting for some relief

in reply toM2323

Hi M2323,

I was wondering if you had to get off of it. I also get night anxiety and weird dreams on HCQ. I was wondering if I waited it out a bit longer, it might pass. My Dr wants to try me on Cellcept, but that has even more side effects.

Svandyk95 profile image
Svandyk95

Hello,

I was prescribed this medication August 30th 2018 for rheumatoid arthritis? Why I put question mark is that I don’t even know ..so I have only been on it a month and the first dose created massive headaches went to the pharmacist he said go down to one dose so I did that everything was good .. for a week or so and then bam .. this week I’ve been having panic attacks every single day and night throughout the day just a huge mess.. went to the doctor and got off of it.. probably going to try something else cause holy I can’t handle it anymore lol

Sunshinedays100 profile image
Sunshinedays100 in reply toSvandyk95

Hi! I am having similar anxiety/panic issues from Plaquenil and just stopped taking it. I have also been on it about 1 month. How long did it take for the symptoms to go away once you stopped taking it?

Thanks!!

72Debsie profile image
72Debsie in reply toSunshinedays100

Hey, just wondering how you went after stopping the Plaquenil. I have recently started it and dizzy, crying, nervous and anxious!! All this happened around the 3 week mark

newjobplease profile image
newjobplease in reply toSunshinedays100

I also am having panic issues from Plaquenil. I stopped taking it. How long did it take for your symptoms to go away once YOU stopped? Thank you for your feedback!

Tiras profile image
Tiras

I take prednisone (5mg a day for 5 to 6 years) and your symptoms you described, can be some of the side effects from prednisone? Do you by chance take prednisone also?

Wishing you the best!

Onslow315 profile image
Onslow315

I don’t take prednisone. I have no knowledge of side effects.

Sorry I couldn’t have been helpful.

Warm Regards :)

Djlr profile image
Djlr

Plaquenil causes "hearing" problems too- not talked about very much.

I have several friends that have noticed it and I have been diagnosed with early hearing loss - not hereditary.

Ototoxicity - ringing and hearing loss

ncbi.nlm.nih.gov/pmc/articl...

Just talk to rheumatologist and see octologist to get it checked and a baseline for your hearing/ringing (tinnitus) concerns

🦋💜🦋

Also:

Anxiety 😳Sad for us💜

That's all we need on top of the fatigue, pain, etc......& our Lupus Fog💜💜🙄

rxlist.com/plaquenil-side-e...

One day at a Time .....🙂Being proactive, learning, and asking our doctors "thought out questions as we work with them on all our Symptoms "

flairup2020 profile image
flairup2020

I was on Plaquenil for a few days and I had severe anxiety attacks, couldn't breathe, I stop taking it and was better. I told my reumatologist and he kind of scoffed at me and told me to try again. I did and same thing happened. So, I just stopped and I stopped seeing him as well,

I was telling him that bad nutrition as something to do with AI. He scoffed again and just wanted to push pills not looking into the root cause.

I like the Wahls protocol from Dr Terry Wahls and the Paleo diet.

newjobplease profile image
newjobplease in reply toflairup2020

Hi... I also took Plaquenil for a few days before stopping. I've had my first experience with a few panic attacks. How long did it take for your anxiety to leave after stopping the drug?

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