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Hydroxichloroquine and anxiety

Hi all,

Well I can’t believe that this is happening all over again with my third medication. Started off okay but am now having the familiar anxiety attacks that I got on methotrexate and sulphasalazine. I honestly don’t know what to do as it’s helping my pain but I can’t bear feeling like this.

I know if I go to my gp, (I see a different one every time so I don’t know why I’m saying that 😩), s/he will say that it’s not the meds and give me antidepressants and tranquillisers . What on earth am I supposed to do? It’s one step forward and three back.

Has anyone else experienced this side effect and did it go away? What if I lower the dose? I feel so lost 😕

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Hi Sjhobey, I was on mtx and hydroxy too. However, always felt the hydroxy was more helpful when managing the pain. I found taking the mtx the next day I had an issue, the pain seem to awaken, all very odd. I now don’t take hydroxy as the dry eyes etc. Vitamin tablets did help me, as mentioned in an earlier post B12, B6 and D etc. Check with your consultant / doctor though. Wishing you well.

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Thanks, I just feel like everytime I try something new I’m back to square one. Also don’t feel like I’m being properly listened to. It’s so frustrating 😕

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Oh, I'm so sorry you are experiencing anxiety with the RA meds. We all react to meds differently and I think mental/emotional side effects are the worse. I suffered hallucinations with prednisone so I do sympathize with you. I hope your doctors can find the right meds for you soon.

Sue xo

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hello Sjhoney ,

I think these medications are quite well known to cause anxiety as a side affect? I would say to try and give your body time to adjust to taking the medication?

I would suggest if you find the side affects too unpleasant then you can discuss it with your rhuematology dept. Mine has a patient helpline which I can ring if I have any concerns They are the experts on these medications. Maybe you could try reducing the dose and see if this helps side affects settle down?

I have experienced anxiety as a side affect while taking hydroxychoroquin and baclofen and I too feel i cannot discuss the issues with my gp as they do seem very quick to offer antidepressants? It is completely your choice if you take them. if you feel a medication has too many negative consequences for you then you can ask what are the alternative options available?

Best wishes xx

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Thanks for your reply. I really feel so lost and confused. I’ve decided to half the dose and see how it goes but I feel like I’m waiting for something bad to happen! I don’t see my rheumatologist til March and as far as I know there’s no helpline or fast track. This site has been so helpful, it’s also reassuring to know that I’m not alone.

Thanks again 😊

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Hello Sjhoney ,

If you are very unhappy with you medication and the side affects you are feeling why not try contacting your consultants secretary and explain your problem? March is still a long way away? Good luck. The rheumatogists know that everyone reacts differently to medication and it can take a while adjusting?

I hope you find some solutions?

good luck xx

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Hi,

That’s a thought, I may try that or see if they have a cancellation system, like a hairdresser 😄

At the moment I feel that I’m just being thrown different meds with very little explanation! The only side effects I was told about were nausea and stomach upset, I’d happily swap them for this 😩

Thanks again xx

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You are never alone now. I'm glad you are reaching out to us,. Please know that whenever your scared, their is always someone to talk to. This site was my lifeline when I was first diagnosed.

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I can't say I've ever had anxiety taking meds, which isn't helpful I know but my mindset has always been that they're prescribed to do good not harm. Just wondering if this is a sort of mental block, that you're more worried about possible side effects (which you may or may not have) than the meds actually doing good? You're recognising they're anxiety attacks, but are you also able to determine why you're having them? Do you think talking to someone on the NRAS helpline would help? Sorry for all the questions! For what it's worth I don't think anti depressants or tranqs are the answer, that's indicative of your GP not knowing what's wrong but prescribing anyway, not good.

Have you discussed this with your Rheumy? I wonder if it is something he has come across before he'll be in a better position to help? I hope whatever route you take it helps, my concern is if you're not able to tackle it you'll be the same with whichever treatment is prescribed. x

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Hi!

I see where you’re coming from but I so want these meds to work, and the thing is, they are helping my pain and inflammation so much.

I’ve decided to reduce the dose by half and see how that goes.

I also find my rheumatologist a bit vague, I don’t even feel I’ve had a definitive diagnosis to be honest! My last appointment was with a pharmacist which was much more helpful.

Thanks for your thoughts tho, they are much appreciated 😊

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Do you think that maybe part of this is caused by feeling disconnected with your Rheumy? I think maybe if I wasn't sure I even had a diagnosis I'd be able to come to terms with taking meds, even if I could see them working it would prey on my mind the necessity, does that make sense? It may be presenting itself as anxiety. As it seems your Rheumy isn't a good connector, doesn't explain things to you well, or at all, possibly if you find you had a more constructive appointment with your Pharmacist, is he the right Rheumy for you? I find it's important to have a good doctor patient relationship. Do you think you could ask to be referred to a different one, that's another option, there's usually more than one in a Rheumy department.

Do you ask for a copy of the report your Rheumy sends to your GP? If not this may help, at least knowing what your Rheumy proposes or makes of your current situation. I always have a copy sent to me, it forms part of the medical record I keep, I started it on day one so I have a full history of my RD journey to refer to. Maybe if you can start to do similar, I know it won't be from diagnosis but it may just help you keep track & as your Rheumy isn't being forthcoming with you at least you'll have some information.

I know it isn't me in your situation but I'd be wary of self medicating. Deciding yourself to take half the dose to my mind would mean half the effectiveness, you'd be less well controlled & could mean risking flaring.

Apols if the above seems too simplistic, it's easy for me to suggest these things when it's not me feeling the anxiety you must be each time you need to take your meds. x

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I think this is a very difficult one. Getting our heads round all this is such a challenge. Ive had some side effects from methrx & sulph all of which have mainly subsided within a few weeks, 6 to 8 weeks as I remember. The panic attacks with methrx and sickness with sulph were the worst, but generally have gone, however do still lurk at times. If that makes sense. Im not sure if I attrubute things to the meds that are not meds, so I try not to. My rheumy told me that if I get side effects they may well go, given time. Im now due to start Hydroxi and had put it off (will write another time so not to hyjack this link). I hope my experience helps . Im sorry that you are in this situation and would encourage you to have a frank conversation with your rheumy to help you progress with your feelings of being heard, or not heard.

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Hi,

It’s such a confusing time, I find it all consuming. I’m going to take a reduced dose and be vigilant, I don’t want it to get as bad as it did before.

I don’t feel I’ve engaged well with my rheumatologist, I had a much more constructive appt with the pharmacist.

It’s reassuring to know that the side effects may subside. They were so bad last time that I couldn’t continue as I wasn’t functioning on the most basic level.

Oh the joys! X

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Hi. I think it could be that you are associating taking these meds with anxiety, as in .. are they going to work..? This has manifested itself in your mind, as in now whenever you take them you get anxious which is a habit formed over time.

I would suggest a visit to your GP and ask for some CBT.

I also had quite bad anxiety associated with mainly life situations (RA/empty nest)..but also because I was on MTX which made me so nauseated and exhausted, making me lose confidence. I had 20 sessions of CBT which really sorted my head, I have a mild form of emetaphobia which didn’t help either.

I came off the mtx and my head is now (hopefully) more sorted as in the habit of feeling anxious has now been broken.

CBT gives you the tools to be your own therapist. I wouldn’t be so quick in blaming the meds as such. Do hope you get sorted soon as anxiety is a terrible thing and can creep up on you. But remember, we weren’t born feeling anxious, we learn it, so we can also unlearn it. Good luck TTx

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Hi,

Yes I’m keeping in mind that it’s a hectic time of year, huge build up to xmas, lots of socialising then the inevitable comedown.

It doesn’t help that this has coincided with menopause. The last year or so has been a bumpy ride.

I appreciate all your comments xx

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I agree re CBT. I have my final review next week. With the year I have had I truly am grateful to have had that input.

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Hi

I experienced very bad anxiety with methotrexate to the point where I found it hard to go out. I also felt really nauseous on it. I then went onto sulpha and suffered with some queasiness but my rheumy suggested ramping it up more slowly, which I did and my queasiness went away. Unfortunately it wasn't strong enough to alleviate my RA symptoms so I was prescribed leflunamide in addition. I was terrified of taking this as I knew it stays in the system a longer time and I put off taking it for a while but I found I had no side effects at all! We are all different with our reactions to meds but I think anxiety can be a very real side effect and I would certainly talk to your rheumatologist about it. Hoping you find something that suits you soon x

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Hi Julia,

It does seem to be a common side effect but one that isn’t mentioned by drs etc? It’s such a difficult position to be in, I know these meds are there to help but I can’t live with such dibilitating anxiety. Rock and a hard place really 😕

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I'm not on hydroxi but just felt I needed to ask a question! It's too all of you who're upset with your GPs because they're throwing antidepressants at you instead addressing the pain issue. Have any of your drs actually spoken to you in regards to why they want you on antid's?

I've been on Amitryptaline for over 15yrs, it was given to me as an all encompassing helper. I was at work at the time, my Crohns was in a major flare resulting in panic attacks and night terrors, this in turn made my insomnia worse and I started to worry about everything. My GP was very helpful and told me that amitryp would, eventually, help all of my issues. Ease the depression (which is natural if you live every day in pain!), calm the anxiety attacks, help me sleep and by adjusting dosage would help with the pains. I started on 50mg, then after getting through the initial zombie hangover each time it was gradually increased to 150mg. Over time though some of the effects (especially the sleep side) seem to dwindle and being diagnosed with another 2 chronic conditions (making it 4 in total) and under investigation for neurological issues my anxiety was increasing. I won't say I wasn't depressed but it was a logical depression I could 'control'. My pain levels were off the chart, having been ill since a child I'm quite good at dealing with pain but with everything put together (and no job and virtually housebound!) I was losing control and hope.

I booked an appointment with a locum gp as mine wasn't available for weeks. I left that appointment in tears, my evaluation of that appointment (I may have interpretated it wrong, we all know the tricks our mind can play when I'm pain and stressed!) made me feel like a hypochondriac. She had basically told me it was all in my head, she wanted me to come off of my Amitryp (sending me into the panic that ruined the appointment!) And to start taking Pregablin and sertraline, which she informed me were both antidepressants!

I was a mess. The pain was real, I wasn't depressed enough to imagine my pain but found myself in my little black hole of doom and negativity. And I wasn't going to stop my amitryp or take the new meds! My hubby took me back to see my actual GP to 'complain'. He was great, I left him with a positive mind and a treatment plan to lower my amitryp and start sertraline and pregablin. He had taken the time to explain things. The amitryp had obviously stopped doing me so good. Sertraline was given, yes as an anti-d as 1 aspect, but in correct doses worked wonders on anxiety and panic attacks. But COULDN'T be taken in levels I needed with the level of amitryp! So the latter had to be reduced.

The pregablin is initially designed for depression. The area of the brain that controls depression also controls things neuropathic. So me, with neuropathy and other pains, would benefit at a certain dosage!

So yes on the outside, it looks like I'm the biggest sad sack going, popping high doses of 3 different antidepressants every day...... But i can now walk sometimes without a stick and I haven't had a 'big' anxiety episode for months!

It may benefit you to go back to your GP and enquire as to why they're so quick to throw antidepressants at you especially as you do have a diagnosed painful condition! They may be just what you need to help! Xxxx

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Hi, that’s some story!

I feel with gps, (I typed it wrong there and it came up as god! 😄), that they’d rather have you on antidepressants than jumping off the nearest bridge. The particular dr I saw is one who I’ve never liked, not for personal reasons, just difficult to engage with someone who seems only vaguely interested in what you have to say. He would ask how I was feeling then immediately turn to his computer and type in my response! All a bit ‘computer says no’! I came away with enough medication to open a small chemist.

I’ve just read an article online which stressed the importance of your dr/rheumatologist engaging with you from the start and realising the life changing diagnosis you have been dealt and the resulting treatment. I feel this was sadly lacking in my case.

I won’t go into it but it was a litany of misdiagnosis and complete lack of communication.

And so it goes on...😩

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Hi,

A mild anti-depressant is not a bad thing. It is pretty well known that some of them are also recommended for arthritis pain. I take Cymbalta. It helps with my pain and my mood a lot. It started as purely antidepressant, but was soon approved for arthritis pain.

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Hi, I’m already on a maintenance dose of antidepressants due to several depressive episodes since my 30’s.

I feel I have had a lot to take onboard over the past 2yrs. Menopause and all that entails, so much more than just flushes and mood swings! And now this RH diagnosis which has had a huge impact on my life. This is depressing in itself but the anxiety that seems to be a result of the meds I’m prescribed is a double whammy! It’s been suggested that I’m anxious about being anxious but that is not how I see it. I have started each medication with a positive attitude and for the first few weeks all is well. But then my heart sinks (and thuds) when the first signs appear.

I had a very difficult 2017 but am determined that 2018 will be better. X

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Never occurred to me that my plaquinel (sp) could cause anxiety. I do have times where I’m really anxious and I sometimes wonder if it’s not in my physiology as it happens regardless of my meds.

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Hi there! I just came across your post and have read most of the comments and it occurred to me...could your anxiety be caused by your menopause and not the meds? I’m only suggesting this due to my own experience with menopause...i began having anxiety once I entered menopause. I was five years into menopause when I was diagnosed with RA and of course with that diagnosis comes a lot of unknowns as well....just a thought....hope you can get some relief! 🤞🏻

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Hi, thanks for your response. I’ve been mulling over the anxiety thing and all I know is that once I’ve stopped the meds for a few days I start to feel better. Anxiety has never been a problem with menopause for me, I would say it’s more irritability.

At the moment I’m still taking steroids and have started taking turmeric capsules. I see my rheumatologist at the end of March so by then I’ll know more about how it’s all working out.

Thanks again! X

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👋 Hi... just wondered how you were doing now? Have your side effects subsided at all? I really struggled to find medication that suited me and I totally neglected my mental health at the time in the first year of my illness. I was just desperate to find the magic medication that would give me back my old health and my old life.... Just wondered if you knew that some Rheumatology depts have a helpline run by specialist nurses? Sometimes you might have to wait a couple of days to hear back from them but it might be worth investigating as it can feel like an eternity before you get back to see your Rheumatologist?

On another note, I know the loss and shock of this type of illness can be so upsetting. I so wish that someone had sat down and talked me through some of what to expect mentally as well as physically. It was only 2 1/2 years in when I started to feel some support or understanding in dealing with the emotional aspect of a chronic illness diagnosis. Even if your anxiety has been triggered by your medication, then it is 100% worth seeking out some kind of mental health support system sooner rather than later. It can be a long haul to finding a good balance of medications and knowing you’ve got access for emotional issues of being ill too, can be a huge help. Good luck 🍀

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Hi, thanks for your concern. I’m doing pretty well at the moment. I decided to go back on hydroxichloroquine but I’m only taking half the dose. I feel my rheumatologist just hands me pills without any real explanation. You’re so right about getting your head round a diagnosis such as RA. It’s such a lot to take on board, not least the toxic drugs involved. I’ve also started swimming a few times a week which I’m so enjoying, makes me feel in doing something positive. Also doing aqua aerobics classes which is great, feels like such a work out!

So, all in all, I’m good! Going on holiday next week for some longed for sunshine!

Take care S x

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Ah that is great!! The sun will do you good I’m sure. Are you flying? Don’t be disheartened if the tiredness of flying wears you out a little, I’m sure the sun will be a massive lift especially at this time of year.

And great that you are able to keep a little active too!! I definitely think more movement helps. Good news all round. Take care and have a fab break away x

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Thanks! I don’t mind if I get tired, I’ll be snoozing on my sun bed 😴 😄

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Bliss!! Enjoy ☀️☀️☀️

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