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LUPUS UK
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Hydroxychloroquine and anxiety

I just wondered if anyone else has had a similar experience.

I am 12 weeks into my hydroxychloroquine treatment for possibly Lupus (still no definite diagnosis).

I have struggled with anxiety and depression since my teens and have been medicated for it for 18 years now. It doesn’t go away completely but I usually manage.

So my question is does hydroxychloroquine cause anxiety? or make it worse? Anyone else had this?

I’m feeling so much worse than usual, it feels like my antidepressants have stopped helping. Actually I’ve had a few episodes that are the worst I’ve ever experienced.

No improvement from the hydroxychloroquine yet but I guess it’s early days.

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Hello AmyG6500,

Sorry to hear that, it's a really nasty thing to deal with. As far as I can see, mood changes are given as a side effect of HDQ in a few people - the figure on drugs.com is between 0.1 and 1%.

Since you have a long history, I wonder how the latest situation fits with how you've experienced periods of anxiety/depression before? Adding the uncertainty of a new auto-immune disorder to your list of 'things to worry about' is stressful and anxiety making in itself! Also, what other meds you are taking (or have stopped taking?) and whether there might be interactions? The interactions checker here is quite handy drugs.com/drug_interactions...

Sorry I have no clear answer, but no doubt others will be more helpful x

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Thanks whisperit, the drug interactions checker is a great idea.

It shows a moderate interaction between duloxetine and hydroxychloroquine.

My duloxetine dose hasn’t been changed in years.

The potential is for the duloxetine to increase its effects, rather strange because it feels the opposite.

I had wondered if the autoimmune problem may have been the root of the anxiety because my anemia and hair loss started in my teens too. That was only treated by putting me on iron tablets for the last 20 years. I may never know.

You are right though, the added stress and uncertainty has probably not helped. And the all consuming fatigue makes it harder to deal with the anxiety and depression with cognitive behavioural therapy techniques, I’m just too tired! x

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Me too. Are you still doing the B12 injections (was it?) ? Goodness knows how all this plays out inside our bodies - I've spent so much time trying to figure out the possible combinations of illness, drug effects and feedback mechanisms that might explain symptoms, especially relating to extreme fatigue, but in the end, so much of it ends up with 'dunno'.

Duloxetine was suggested to me by a good GP for sleep problems, but then discounted by a neurologist, but neither really offered a clear rationale; more like,' try it and see what happens - or maybe not'. x

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I think ‘dunno’ is the answer to most autoimmune questions!

Yes I’m still on weekly B12 injections. They really do help with some symptoms.

So much of it is try it and see! Duloxetine does control the anxiety and depression to an extent. Doesn’t help sleep though, I had 6 months of insomnia when I started on it. That’ll help the fatigue!! 😳😳

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Please discuss this with your GP hopefully this will help. The hydroxychloroquinine should be helping after 12 weeks.

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I’ve been given the HDQ for fatigue but if anything that is worse.

I have digestive trouble but that’s partly because I already have GERD and my anxiety affects it. It is worse since starting the HDQ.

I haven’t seen a GP for over a year and it wasn’t the GP that prescribed the antidepressants.

The thought of battling through the system to get a GP appointment with the only one who’s taken me seriously fills me with horror. Maybe I should though.

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I had an adverse reaction to HDQ - all-over pin-prick rash and palpitations - within hours of reaching the full dose of 400mg (I had tapered up to it over two weeks as I seem to have hypersensitivity to some pharmaceuticals - and quinine). My rheumie said I HAD to take it, but after a couple of weeks on 200mg, I felt suicidal - with no underlying depression - and stopped it.

It's the same class of drug as Lariam, the anti-malarial issued by the MOD:

dailymail.co.uk/news/articl...

HDQ can have serious psychological side-effects, and some...the list on drugs.com is much lengthier than the UK equivalent (on the Professional tab):

drugs.com/pro/hydroxychloro...

Your GP may not be familiar with HDQ (mine isn't) - call your Rheumie's secretary and ask for a call back or quick appointment.

If you get the all-over rash, stop taking it and see a doctor!

Wishing you all the best xxxx

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Wow! That’s a scary read. I haven’t had suicidal thoughts or a rash.

Just an increase in anxiety and depression (a lack of motivation for anything) and bad tummy trouble.

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I too suffered with Panic/Anxiety..a living nightmare to say the least..I also take medication which has helped a lot. I have been taking Hydroxy since last September/October? The medication hasn't caused my panic to attack me again. I did up my panic/anxiety med a bit though.....

So sorry you have to feel the panic again...My hope is that you will be able to sort it out SOON Xx

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Thank you! I’m already on quite a high dose of Duloxetine. I could up it. The GP is likely to say it’s up to me. It’s funny, it’s one thing to be consulted as a patient but having all the decisions left to you just adds things to worry about.

To try HDQ or not was up to me too. Because we don’t have a diagnosis yet. I figured it’s worth a try as nothing else would help the fatigue. I see the rheumatologist again in September. Hopefully I’ll know by then if it’s going to make a difference.

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The Hydroxy has not helped me at all with fatigue...But my small joint pain hands wrists foot is all but gone...a huge plus......And yes..there is no crystal ball to know what THE ANSWER is....I go with my gut feelings along with Drs advice Xx

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Hi AmyG6500,

I am sorry you are going through such a though time.

I don't know if my comment will be of any help, but I can only give my experience.

I have had lupus since my teenage years, although undiagnosed till I was 33 years old. I had many symptoms including depression as a teenager. I also had a lot of skin issues, which was put down to acne. so your question about whether your depression and anxiety could be lupus or autoimmune related is quite possible, as mine was. I also find when I am in a flare or lupus is not controlled adequately, because of nervous system involvement I get anxiety, panic attacks and agoraphobia. When my lupus quietens, these symptoms often subside. so there may be correlation between your depression, anxiety and uncontrolled immune disease.

The other thing is your hydroxychoroquine. I am hypersensitive to meds, they often cause all sort of reactions in me, one of which is severe fatigue. certain brands are worse then others. I can only take hydroxyl made by "Sentiva" the generic brands make me quite ill, with one of the symptoms being extreme fatigue.

Is the brand you are taking a generic brand and could this be affecting the way you feel presently? if it is a generic brand perhaps talk to your doctor about changing the brand. many of the lupus sufferers on this site will tell you they react badly to generic brand of hydro.

Perhaps once you get on the right meds you may start to feel better, which may help with some of the anxiety you are feeling.

All the best

field

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Thank you for this information. I have been ordering my hydroxy from a different source for six months and wonder if this different brand is what is causing these symptoms in me -anxiety, depression, agitation, lack of enthusiasm and fatigue. I’m definitely going to discuss with my doctor. Thank you for sharing.

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Hi field

Thanks so much for taking the time to reply to me. Actually your experience is really interesting. The more I read the more I think I’ve had Lupus since my teens but then I think, they can’t possibly have missed it all this time!! I’m 38!! Your experience suggests I could be right though!

I too had loads of skin problems that were put down to acne. I also had massive hair loss that was put down to anemia. The cause of the anemia was never investigated. I was put on iron tablets. When I stop them my hair falls out, the doctors answer was keep taking them then. 20 + years later I’m still on them. I also get ongoing hair loss I have always put down to stress or illness. (Broken leg, bad adult chicken pox) I have a monthly treatment from a Trichologist that helps control this.

I also have sun sensitivity and come out in a rash like prickly heat. I get flushing either side of my nose (although not a true butterfly rash) and ongoing itchy skin spots on my face. I was given antibiotics for acne for several years. I also have Reynauds. I remember kids in school being freaked out by my rubbery white fingers.

All this plus positive ENA/ANA with anti-RO but still no diagnosis! 😫

Actually the rheumatologist is of the opinion that the treatment will be the same whether I have a label or not so he’s not keen to give me one when my symptoms are mild. ??

Going back to the anxiety/depression, I was diagnosed with OCD and GAD (generalised anxiety disorder) at the age of 20. The symptoms started at 15 ish though. No matter what antidepressant I’m on I still have ups and downs and they don’t seem to follow a pattern. Maybe it’s a Lupus pattern that I’m not aware of.

My digestive problems always follow the same pattern, I thought it was the anxiety causing it.

I’m on a brand of HDQ called Quinoric. I will discuss other brands with the rheumatologist when I see him. He’s not much of a listener though. Maybe he will have heard of other patients saying the same thing.

My tummy trouble is bad at the moment. Bloating, cramp, diarrhoea etc. I think it’s a combination of the HDQ and the fact that I have had to change the schedule of my GERD medication to accommodate it.

Thanks again,

Amy

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Hi AmyG6500,

I can relate to many of symptoms u discribe. I had a blood test when i was 18 which indicated i may have had an immune disorder, but was left, even though my mother had lupus, but when u r 18 u r not always aware enough to connect the dots. It sounds to me like your lupus is not being controled adequately. I was on hydroxy for years because my lupus was considered to be "mild" and stable, but it wasnt mild and not stable even though my inflammatory markers came back normal. It was active and causing damage and i was not aware of this. I have now descovered that i am one of those people who will have normal bloods even when i am in a massive flare, so bloods r not always accurate. Hydroxy alone is probably not controling your lupus adequately and hence why u r experiencing a lot of symptoms.

U need to change your current rhymy. I did and complained because my past rhumy dismissed me and my symptoms for years till it was too late. Dont sit and accept, fight for u because no one else will. Dont be afraid to tread on toes, u deserve the best life u can have.

X

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Thanks for your advice. Are you in the UK?

Do you mind if I ask what controls your Lupus? I thought HDQ and steroids were the only options.

A x

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Hi

Yes i am in the uk.

My lupus is very difficult to control because i am so hyper sensitive to meds. Currently i am on hydroxy and pred. I have reacted to everything else. Next thing they want to try is infusion with cyclophosphamide. I have had a lot of positive feed back from fellow lupies on this site in this regard and am seriously considering it, as my lung disease is progressed and my lung capacity is diminishing. My lung desease was discovered late because my rhumy was not listening to me about my symptoms for a long time until damage was well eatablished. Like u my rhumy just kept me on low dose hydroxy, which was not adequate.

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Hi, AmyG6500. I have lupus nephritis. When I finally found a doctor in Boston, he put me on hydroxychloroquine. Months later I suddenly realized that I could plan and do activities I had given up until then because I lacked the energy. The only side effects I noted were sensations of a tear running down my face. That has gone now. I would say it took 4 or 5 months to happen. Good luck. I hope your anxiety abates and that you get some peace.

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I have been on 8t for 5 years and have had no problems

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Hello, I went through exact thing with on got on that drug. Before I tell you my horrible experience I want to first say I'm still on it and I'm doing well. Last spring I was diagnosed with Lupus. I already had stage four Lymphoma and went through heavy chemo for it. they think Lupus caused it and I had Lupus for several years. Last summer was the summer from hell for me. I was horrifyingly depressed and I could clock the deep heavy anchor around my heart depression that got intensely worse after I took my Lupus med. It was awful. Every little tiny thing bothered me and depressed me. I can't express enough how horrible it was. I got on vitamin D3 and birth control to help regulate my emotions. I already was on Xanex and still am. It took about a year for the med to regulate but once it did and my Lupus was more under control life got a bit easier. Now that I'm doing better there is no way I will ever let my rheumatologist lower my dose. I don't ever want to go through such a horrifying experience again. I truly hope things get better for you

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Hi Amy. I an Nan and am sorry you are not feeling good. Hope this helps, as I have been taking 200mg of hydroxy since about age 25, except when pregnant. I am now 68 and just started duloxetine. For me the hydroxy prevented me for many years from getting worse. Now being older have more problems and a lot of pain in my joints. They gave me the antidepressant to help with pain. I have not had any big problems with either one of these medications. So I hope the hydroxy helps. We are all different and if you do not feel well, from taking it , please tell doc. God Bless You.

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Hi Nan, thanks for your reply. I’m glad HDQ worked well for you.

I understand duloxetine also helps with pain. It’s not why I was prescribed it but that’s a bonus I suppose.

Unfortunately I have lost faith in my doctors. It’s almost impossible to get a GP appointment and the Rheumatologist is quite dismissive. I must keep pushing. I just haven’t the energy.

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New to This drug, but I can tell you, I’ve gained weight on it, gained depression and anxiety. I feel more paranoid and the benefits that were helping in the beginning ( been on this one year) have now subsided ) I feel I either need more of this drug or a change to another one. Brand new here. I’m 51 and newly diagnosed with SLE. I can’t seem to feel rested . I can’t sleep at night. I have fibromyalgia and Thyroid disease. Hair loss is same and skin issues are a little better since being on this med. fevers and constipation are much worse. Migraines are back . Let’s keep posting and keeping in touch on this medication. I go in for my 3rd check up next month. I will be asking my Rheumatology team for answers. I’m desperate for feeling better and I hope you get answers soon as well! One thing I do know , diet is key! Check online for ( instagram is great ( just key in lupus warriors) and look for webinars on good diets ! Plant based and nutrition you can get on right from your local supermarket! Nothing overpriced! THAT IS KEY! I am going to do this change as well! I will have some more info next time I write with some names and links! 💔praying for you!

L.N

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Thank you MO3S50

I have heard that diet can help. I’m barely finding the energy and motivation to stick a pizza in the oven though. The thought of attempting to prepare a meal from scratch is enough to have me in tears. I must try to implement small consistent changes.

I’m gaining weight on it too. And losing weight was what was listed and expected.

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Oh Amy, I was losing weight for the first time in years b4 this Med! I was down almost 40 pounds! I’m so tired and bloated now 1 year later ! 16 pounds up and 3? sizes up! So bummed! I’m talking about foods like pomegranate seeds , broccoli, any easy whole foods! I can’t even clean my house anymore! I do the dishwasher and some laundry! ! I’m JUST starting to look into a diet change

I can do successfully and then the b12 shots.

I used to run a house with 3 sons and all their friends, a small salon in my home and decorate on the side!!

I have been so judged until recently when the word has gotten out what I have. Even with the diagnosis I find people Caring to much about me not going into a part time job!! It’s thrown me into a deep depression. But... with faith and peace of mind that I refuse to be bullied, I am pulling out of this funk! Why I am on here 🤩I’ll bring back info I find on some good testimonials for us to try!! Hang in there, your not alone!!!! I remember this, I have a family who needs me, and I am not the only one affected! This is what makes me get up and try harder...even though I just want to pull the covers over my head and sleep The day away 🤪 Naps are important though! Xx talk soon!

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Hi Amy,

So sorry you’re feeling like this. It does take quite a while for the positive effects of hydroxy to appear, hopefully you’ll see some soon. I found it took 3-4 months and has made a big difference but I stopped it twice in the early days because of the tummy trouble and mood changes - I felt very grumpy and panicky and I don’t normally at all. The only other time I’d had panic feelings like this was when I went to Africa and was on... malaria tablets! So I’m fairly sure there’s a link for me - but it did get better after a while and I don’t notice any side effects now (been on them 6 yrs). Try zentiva brand of you can, lots of people seem to get reactions to other brands.

It seems like you’ve had lots going on from a young age that a lupus specialist may be able to put it all together and see the bigger picture. Anxiety and depression are a part of these diseases for many people and if you notice yours fluctuates with your other symptoms it could be part of the wider autoimmunity.

What part of the country are you from? You need to find a rheumy who listens to you and helps improve your symptoms. So hard when you’re exhausted, depressed and anxious with all the other symptoms 🙁 but if they work with you and get the treatment right (and listen!) it could make a massive difference so it’s worth searching for the right one who will take a lot of burden from you and look after you. If you feel really bad mentally on the drugs you should get your GPs help too

X

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ThankYou so much. I’ve been off of here for a while. I’ve been up and down ! Out a couple times and then really sick. Finally my parent is taking me to a holistic “guru” who is very good in his field and a Wonderful homeopathic chiropracter. I’ll let you all know how it goes and if there is anything I can bring in here to help anyone ... you bet I will! Love and best of health and prayers to all of you! Xo 😘

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Best to Amy! I’m praying and sending you healthy thoughts!! 👩‍❤️‍💋‍👩Sorry I took so long to reply. I hope you have a healthy and wonderful week ahead. Take care. 😇🙏

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