I slammed the door as hard as I could and that’s just not me, losing my temper is not something I do, or not before HCQ.
I feel so trapped - if I don’t take the drugs I could damage my health, but taking the drugs I’m no longer me. I know my physical health should come first, but I don’t know who I am anymore, I have no confidence and my fuse is so short that even I don’t know when I’m going to burst, it’s as much of a surprise to me as my partner. I’m not sure that my relationship is going to survive this personality change. I feel so alone with this and totally helpless. Before HCQ I didn’t have arguments, I could always take a step back, a deep breath and use perspective.
After I’ve calmed down from losing it, I feel really ashamed and embarrassed, I know that I hadn’t been reasonable and I feel so guilty that my partner has to experience this behaviour.
He says that if I can’t manage my mood swings, I needed to go. It’s fair enough, he shouldn’t have to put up with this. I just wish I knew of a way to get by on this drug, I’m helplessly watching as I fall apart, along with my relationship.
I sought help from a lupus clinic in London, but I was told HCQ is the least toxic and the only one I should be taking. When I tried to explain that I was struggling I was told that most people find it difficult having a life-long illness. It was the rheumatology department who prescribed me HCQ, but I can’t reach them, it rings a few times and goes to voicemail. I’ve left messages but no-one comes back to me.
Any advice on managing mood/temper/personality change on HCQ would be much appreciated. Or just someone to talk to. I’m not coping and I just don’t know how I will on this drug.
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Divine_Frank
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Contact your gp you may need some antidepressants to help even out your mood.ive been on hydroxchloroquine for 2 years without any mood issues but have been on low dose citalopram since I lost my partner in an rta in 09 .hope you can get something to help x
Empathy...I had to stop taking it due to severe mood changes...despite coming out in an all-over rash with palpitations, my good doctor advised trying a half dose..then 100mg/day...all with the same result because it builds up in your blood over time
<sheepish grin> oh sorry, this was more than two years ago...the vertigo was within a couple of months of starting on HCQ back in 2016 and extremely scary it was too....I had low blood sugar too and nearly passed out one time when out a walk but happily I recognised what was happening from back in the days I did distance cycling and ate some of the hound's Gravybones...she was most perturbed and would have called an ambulance if I'd had a phone on me! xxxx
Oh suzannah thank u..u have made me chuckle today!! 🤗😹 No disgusting bonios for u then!! 😹Personally I've never eaten dog food but I have to say I did drool a bit when spanielmadlady posted up her home made doggy biscuits!! 😹🌈😽😽Xx
Oh! I had stacks of those in my pockets and used to eat them at break time with my friends at school - nice and natural snack for kids - I’ve never had a filling in my life! I still do pick the maize flakes out of the feed sack to nibble on, old habits and all that! 😂
Big ones, little one’s whatever was in the dog treat box! I used to eat the doggy choco drops too. I must say that the minty fresh modern day doggy Dentistix don’t appeal.
Forgot to say, the 6.5mg/kg dose should be based on 'ideal' body weight ie 400mg daily was too much for me at 5'6" and around 60kg....and the Royal College of Ophthalmologists now recommends 5mg/kg
There are 300mg tablets available from one manufacturer now (and how long did that take them...) xxx
Thank you so much for your comments everyone, really helpful and so lovely to feel understood and listened to. Means a lot to me x all the best to you all
I can relate to drastic mood swings n the slamming of doors..this was just after I was diagnosed with lupus in 2017. I'm on hydroxy but I wouldn't say that the mood changes were related to that..I think in my case it was my grief reaction to having an incurable illness.
There r recognised stages of grief n everyone goes through these ..it's part of the healing process..anger is one of those stages.
U have received a diagnosis recently n u have to give yourself time n space to work out the emotions surrounding this life changing news.
The main thing is to try n harness the energy n use it positively I found anyway..I started writing my feelings down..anger..lots of swearing..why me? etc!! 😡😠🤬 It really helped me to get it off my chest without causing too much disharmony between me n my hubby!! 🙄
Give yourself space n time to adjust to this new way of living..it's tough but it's not impossible n u r not alone 🤗🌈😽😽xx
Hi, I would get a second opinion if you can re. alternative available therapies. Also - maybe look for some counselling help for you and your partner who is probably trying to come to terms with your diagnosis too, sounds like he needs more information to be able to understand and know how to help you - especially when your down?
For what it is worth - After 18 months of taking HCQ, I decided to try not taking it 3 months ago after forgetting to take it one day and waking up the next day feeling unusually well!
Thought I'd see what happened if I continued not taking it.
(My rheumatologist has been poor/not interested monitoring my dosage level - started out with 400mg a day, read the Royal College of Opthamologists report 5/kg and calculated I needed less than 300mg - only 200mg tablets available so Rheum. suggested alternating daily 400/200 mg - not great for the even pattern my body needs - so I decided to stick with 200mg per day.)
In my case, since stopping HCQ I feel so much better!! Brain fog and that particular type of fatigue that is really hard to describe both lifted. Also muscle weakness and vertigo - which I was beginning to get - have gone and my mood is fine now - I did find I got pretty low sometimes, a wave of sadness and crying would just sweep in.
I am concerned that without medication, my particular variety of lupus - undifferentiated connective tissue disease - will cause internal deterioration I am not aware of - but my rheum. consultant has agreed that the side effects of medication are not worth the possible benefits for me for now so I do feel lucky! I am also seeking functional nutritionist help privately - why is there so little NHS interest in looking at gut health which is so key to the auto immune system??!
Sending you lots of empathy and I hope you can get the answers and support you need soon.
Very interesting, I was diagnosed with Lupus eight months ago. During those eight months I lost ten pounds, had memory fog issues and have not noticed any improvement in joint inflammation. In the last 2 months after being increased from 200mg to 300 mgs a day then my skin started getting darker and darker, to the point that my neck now is significantly darker between black and gray, so my doctor said to stop taking it cold turkey and wants to see me in two weeks. I didn't agree on removing it completely so I went down to 100mgs a day, at least until the day I go back to see him and see what he says..
I have also noticed my gums bleed almost every single time I brush my teeth which was an occasional thing before, my hair is falling off more than before and now get up 2 or 3 times a night to go to pee, even though I don't drink much water after 6:00 pm, it seems I urinate more than what I drink, what is that?
My bed doctor says I don't have lupus, that I have undifferentiated connective tissue disease, so with this other reason I think I might be better off without it and ride the disease until something else comes up, I'm 57 years old so i wonder if it's best to sit and wait for changes and maybe define what i truly have or all doctors agree on my diagnosis.
If anybody else is in the same boat, please contribute your information. I'm very confused with all this new decease.
Thank you for being in this forum.. it does give us hope..
Have you looked into nutrition/gut health to help? Also - are you female? - if so menopause could also be a contributing factor! I find UCTD is quite an unhelpful diagnosis - lets my rheumatologist off the hook, have asked for a referral to a lupus centre of excellence (are several around the country) to get a more exact diagnosis but hasn't come through yet - Covid etc.
Interesting you mention gut health Sewh, I have been incorporating Kefir with 12 live active cultures and I have noticed a nice change in my digestion..
I've tried to make appointments to other doctors now but it's hard with the pandemic. by the way I'm in USA, it seems UK doctors are doing better than ours, since now you have the med in 300 mgs. we only have 200 and 400mgs.
I'm post mesopause at 57 but i did notice all the joint problems started during it.
What are your main complaints that lead you to the diagnosis?
Great that Kefir seems to have helped, I've found it beneficial too - although a nutritionist friend recently told me that it can be good for some and not for others! All so complicated because we all have individual gut profiles.
Tricky with the access to doctors - the pandemic is causing appointment problems here although for me it hasn't been great anyway - before pandemic had 2 rheum. consultant appointments 'postponed'/cancelled, just had one recently after an 18 month gap.
The symptoms that sent me to my GP 2 years ago when I was 57 (!) were rashes - vasculitis and hives. She sent me for a blood test which revealed inflammation and other abnormalities. I was then sent for a variety of tests - heart, kidneys, MRI, bones - to check and hopefully rule out anything serious - the NHS was really good in this respect. In the meantime, I was working as a primary school teacher - 55-60 hours a week in a highly toxic environment! I think I hit a perfect storm of menopause/post menopause, over-work and prolonged stress and my body just had enough!
I went to the GP in August 2018 with rashes but by October after returning to school my digestive system was bad, I was experiencing severe fatigue, my mood was really low and I had to take sick leave. I was diagnosed with Lupus in November 18 and prescribed HCQ - with no discussion of dose level and side effects etc. - and since then my diagnosis has been altered to Undifferentiated Connective Tissue Disease. My main symptoms now are rashes and neutropenia - I have a really low neutrophil white blood cell count because my immune system is knocking them out. Since I stopped taking HCQ 3 months ago my muscle strength, brain fog and energy levels are much better. I have given up teaching - which I loved!- but stopping has also made a major contribution to my improved health.
I am finding that distilling out what is usual for women in their 50s, nearly 60s (!) - muscle weakness, thinning hair, needing to pee more - from what is additional illness is tricky because I haven't been this age before - I don't know exactly what it should feel like! - and this auto-immune condition is so difficult to pin down.
Anyway - my diagnosis story - thank you for asking! Do you think your living/working circumstances are stressful? Have you had tests? One thing I have found useful is asking for printouts of my blood test results - so much info on the internet, I have found it really useful inform myself re. my test results etc. - have been able to ask the consultant really focused questions and get info. I wouldn't have normally got.
Gosh Morllse, that's a lot to deal with. Great that you're going with your gut on dosage though, I think trusting your gut instinct is so important.
I hope you get a diagnosis soon, even when it's not the best news it can be such a relief to have a label and give you the chance to better understand what's going on with your body.
Let us know how you get on at your next doctor's appointment in a couple of weeks time and warmest wishes
Thank you. I learned that doctors are not God, they sometimes follow the recommendations of pharmaceuticals and love to give you a pill and don't even learn the side effects or how to appropriately prescribe the mgs. Like in this case, I'm 105 lbs so if you follow the formula of 5 mgs. per kilo then i shouldn't be taking the 300 mgs a day, but it is so hard with the pill since it only comes in 200 or 400 mgs in USA..
So difficult to decide whether the adverse impact of drugs outweighs the health effects of coming off it, but happy to hear it seems to be working out for you.
I've just started therapy and seeking a functional nutritionist is a great idea. Echoing your frustration with the NHS and how basic it can be, it seems so odd to me that they can help with some symptoms (largely the physical - muscle aches, rashes) and yet the emotional symptoms are your own problem, despite the indisputable link between lupus and depression/anxiety, and on top of that the link between HCQ and emotional lability and suicidal tendencies...
Hi there. I can relate to what you are describing on HCQ, only for me it was constant tearfulness rather than anger.
I tried the drug in July and barely made 10 days on it because the change in mood was so sudden and pronounced. I also developed a fresh ulcer in my mouth or on my lips every time I took a pill. It was my partner who pulled out the patient information leaflet in the end and read that mood swing / emotional lability was common side effect.
I am confident that my reaction was due to the drug as it diminished then disappeared once I stopped taking HCQ. I received my diagnosis over a year ago, but have been struggling undiagnosed/misdiagnosed illness for at least 20 years beforehand. So I know it was not a firmy of grief, which of course does wash over me from time to time, but certainly is not the same feeling as the mood I had on HCQ- I just did not feel like myself at all on that drug and could happily have jumped off the roof. It was very hard to articulate to my otherwise wonderful GP, who suggested it might just be a reaction to coming to terms with the illness.
I have also since tried colchicine, which although it didn't stop me developing more joint swelling did not affect my mood or give me any noticeable dude effects.
I'm seeing my rheumatologist tomorrow and hope he has a way forward. Like you, I can't tolerate HCQ but my condition is deteriorating and I do need treatment. I feel as if I've somehow failed by not being able to tolerate this drug, as I know so many others who are on it and are doing really well and without those side effects.
I also think I have lost my rheumatologist's sympathy in that I was reluctant to start on HCQ because of my fears of side effects to the eyes. But I was deteriorating and had resigned myself to having to run those risks when I did start on the drug - just never expected it to affect my mood that way! As you say, I just did not feel at all like myself and it was a misery.
Do get a second opinion. You might be given another drug like mycophenalate that would suit you. My picture is complicated by a co-existing immune deficiency and I remain without treatment ( but with blood clots now!) for my condition at present.
Good luck and keep talking, even if it is just on this forum. No point denying how you are feeling, just better to vent safely and find a way through.
It's amazing how quickly HCQ can have an impact - I was the same as you noticing a dramatic shift in mood just days after I started on it.
Sounds like you've really been through it with such a long period of misdiagnosis, that must have been hugely frustrating.
I shall indeed continue venting! This forum is so brilliant, sharing insights like this and the vast wealth of collective knowledge as a result of lived experience, nothing like talking to rheumatology/dermatology who don't seem very clued up on lupus.
Good luck with the rheumatologist tomorrow and sending warm wishes your way
Thank you. Unfortunately rheumatology appointment wasn't the best experience yesterday. Trying to make sense of it now. When my partner and I tried to explain how bad and sudden the mood swing was, we got the feeling I was being doubted.
Been asked to try another brand of hydroxychloroquine before trying mycophenalate, which I was previously told I wouldn't be given because of my immune deficiency!
Also was told that the lupus-like vasculitis I have doesn't cause blood clots in the veins, or affect the veins. Am sure the other hospital told me it does. So bewildering.
I was recently diagnosed and had a very similar issue- I started getting a very panicky hyperaroused feeling while on HC and had to stop taking it. Had also gotten the same reaction from prozac that they gave me last year when they believed my symptoms are in my head, and had to stop it too.
Doctors believe my reaction is "psychosomatic" (aka, no clue) or that I'm having a nocebo reaction. Therefore I started homeopathy to get a placebo reaction so I can tolerate the drug...crazy right ? I'm meeting the rheum and a neurologist tomorrow to discuss further options. Also about to have an acupuncture session to see if it helps with this weird adrenaline thingy.
Just to say I'm on the same boat.. all the best to you !
Hey Frank ! I'm continuing with acupuncture because it's consistently been helping with all of my lupus symptoms since then (rhinitis, sinusitis, insomnia, back pain, panicky hcq side effects etc) since i started ! Idk if it's just me, but i strongly recommend it to everyone i know. Neurologist gave me inderall (propranolol) which i took for two days and it removed the jaw tension which was insane. Neuro kept up with the "it's not the meds it's you" story, (he actually said it might be an hysterical reaction to my antiphospholipid diagnosis but i honestly believe that's BS) but the rheum agreed meds don't work the same on everyone and agreed with me to stay plaquenil free and get antibodies checked again in three months. I honestly feel much better with acupuncture even though I hate needles so I'll see what's up by Christmas and continue without hcq !
All the best to you, get in touch if you would like to talk more
Amazing that you're finding things that work for you, especially when you hate needles! And good to know there may be a more natural way to manage lupus than just drugs. Warm thoughts, Frank
Hey Frank, to be honest I have to go back to Plaquenil this week due to extreme fatigue and sleep 12+, but my rheumatologist offered to try taking a small dose for only a few days see if it can control the flare maybe you can negotiate something similar, all the best !
I think HCQ exacerbated my symptoms initially. I have a high sympathetic drive from autonomic dysfunction and after starting a beta blocker, this feeling of anxiety quickly dissipated. I take Wellbutrin which is a stimulating antidepressant and if I take full dose all at once, I get this uneasy feeling that you describe. On edge. Same if I take even the tiniest dose of adderall anymore (I used to take 20 mg twice a day). I think what you are feeling is your body in overdrive. What is causing it could be any number of problems but please don’t think it’s in your head. It isn’t. It’s probably physiologic and unlikely due to HCQ. But I’d let your provider know that it came after starting HCQ. Maybe they can give you something to hold you over until the HCQ kicks in.
Hello ! I just read your comment and as i wrote above i also have been having a weird overdrive reaction to both prozac (they tried on me last year) and plaquenil - photophobia, crazy jaw pain, agitation, panic and rapid heartbeat and pain. The psychiatrist prescribing prozac must have thought I'm having a manic reaction and put me on antipsychotics which i took for a month, even though the initial issue i presented with (at my gynos) was low blood pressure and all my other undiagnosed lupus symptoms and she suggested trying a psychiatrist for antidepressant therapy. It was horrible. Now a year later i was also diagnosed with fibromyalgia on top of lupus and i was wondering if there is a connection between it and my weird and very similar reactions to prozac and HCQ, through a very excitable nervous system ? I took propranolol and it removed most of the problem in two days, but not the photophobia and weird feeling. Anyway it just sounds like you're having a similar reaction to mine so i thought I'd investigate a little, I'm still curious to figure out why it happens, and doctors favor mysterious freudian formations which to me sound like 20th century gibberish for now my rheum has agreed to not take plaquenil cause my symptoms are mild, but in case I ever really need it it would be nice to know what causes that crazy reaction in order to avoid it. May i ask, what is your autonomic dysfunction, how does it manifest ? Thanks so much ! All the best, mimi
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