Depressed?: Hello. I’ve taken chloricoquine for a... - LUPUS UK


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Hello. I’ve taken chloricoquine for a year and a half now, 400 mg a day, when I was diagnosed with lupus, MCTD, sjogruens and several others. I have always been social and outgoing. Hearing my diagnosis I went through a grieving period but have now excepted my fate. However, I never really feel “up” anymore. I just go through the day and push myself to do the routine things I know I should or have to do. I feel flat. Sometimes I really feel down. I’m wondering if this is the disease, if I’m depresssed or it is from the medication. My rheuemy told me if I’m depressed see my regular doctor. I hate the idea of taking antidepressants but don’t know what to do. I feel like life is passing me by

22 Replies

I’m on Hydroxychloroquine 400mg and I understand what you mean. I feel like I’m just existing. I get up, go to work, come home, tidy, go to bed. I hate the feeling as I have a 9 year old. It was my birthday last week and instead of being upbeat, all I could think of was how quickly could I get rid of my guests. I used to be really positive but now I look at what could go wrong and have fixated on this one woman in work who has tried to use me for her own gain. I want to start swimming but I know she goes ( with her son who she is always trying to prove is better than mine) and I think I can’t be doing with seeing her. If it gets worse though go to your dr. Sometimes antidepressants also help with pain so try looking at it from that point of view. Hope you’re ok though xx

Imom in reply to Sarahd1609

Thank you for responding. Happy Belated Birthday. Last week was my Birthday, too!! My kids kidnapped me and wanted to party. I wanted to be home in my pajamas! I smiled and went with the flow.

Hello Imom,

It's really difficult to disentangle the reasons why we might feel unhappy and low when we have a chronic, debilitating conditioin like SLE. Leaving meds aside, it's clear that there are plenty of other things going on that provide good reason for it - coping with feeling generally unwell, the restrictions on daily life, a sense of loss, worries about the future and so on. As you probably know, the standard advice you would probably get from a mental health professional would be something like:

- adopt a disciplined lifestyle plan based on the '5 Ways to Well Being'. That means finding time in your day to do some (or preferably all) of 1. being social (i.e. interacting in person with trusted friend(s) 2. Do some physical activity (however small) 3. Practice mindfulness 4. Set yourself some goal to learn or practice some skill or new learning 5. Do something nice for another person.

- ensure you have a regular routine to your day, especially safeguarding sleep

- consider anti-depressant drugs only if the above has not helped and you feel very low for most of the time, most days

The research on anti-depressants seems to indicate that for most people with so-called 'mild' depression, they have a positive effect that is slightly better than placebo, so they are not a miracle solution. However, every little bit helps! Finding a sympathetic professional is important, and I would certainly consider asking for a referral from your GP to a primary mental health service. They will assess your situation and help decide what you think would be best right now.

Otherwise, you probably have seen the LUK post on this topic here?

I'll bet nearly everyone on this forum has experienced long periods of misery of one sort or another. We need to help each other out, so please do keep in touch and let us know how things are going x

Imom in reply to whisperit

Thank you. Hugs.

hi, I have been feeling exactly the same, I am either feeling sad or I feel nothing. I wonder if in my case 30 years of illness has finally caught up with my mind. I have always been able to find humour in my situation [even if no one else gets it] and this has helped me through, but for the last year I wonder what it has all been for. I can't plan ahead eg for a holiday because I may not feel well enough to go and then I'd lose the money. I don't want to be around people because they just seem to be overwhelming and noisy. people I know ask how I am but I see their eyes glaze over if I tell them. I too don't want to take antidepressants as I don't feel this would make things better because the reasons I feel sad or low would still be there and it would be just another drug to add to the many. I haven't been able to work either because I'm too ill or when my health was better because no one would employ me for whatever reason. I just exist, for what I don't know. got a doctors appointment myself this morning so maybe something may happen then.

louise-a in reply to suzannah16

Oh yes the eyes glaze know that one, Lou xx

Yeah ditto - I think why bother asking me when you are not interested in my reply - I only talk to 2 people who I know genuinely listen and are concerned. They too, have autoimmunity conditions in their families....

Yes I think the ones that understand often have experience of AI or other ill health issues. Some exceptions to the rule as always . Lou x

Imom in reply to Horsewhisper

My daughter really tri s to understand and help. I guess we are lucky if we have at least one person that does.

Imom in reply to suzannah16

I’d be interested to hear what your doctor says. I go next week to my Rheumotoligist but he doesn’t deal with the depression. I think nderstand everything you said and so relate! No one has a clue how empty we feel because we look the same as always. I. Don’t talk about it for fear of crying. I just smile and pretend I’m happy - maybe I’ll convince myself!

suzannah16 in reply to Imom

well doctors appointment was waste of time. she asked why I was there I said I got an e-mail telling me to make appointment. she said who with I said didn't say. anyway she asked, after I prompted her, if my meds were ok. I'm allowed one week off the blood pressure tablets to see if my BP goes up without them. she wrote me a prescription to change the brand of hydroxy to zentiva. and then more or less pushed me out. didn't get a chance to mention depression. took new prescription to pharmacy to be told they didn't think they would be able to get that brand but she would try, implied either government or health board wouldn't allow it. will try again at next weeks renal appointment. I don't have the energy to keep fighting for every little thing and it's all I seem to have been doing for the last 30 years

Imom in reply to suzannah16

I’m sorry to hear that. What makes that RX different? I live in USA and have been ordering my hydroxy online from Canada, shipped from the UK for a third of the price. The last batch I got is very bitter in my mouth when I swallow. I wonder if anyone else has had that experience. I think I’m going to try CBD oil before more meds for depression. I just don’t know if I can afford it. Gotta figure something out!! Hope you do too. Warm hugs.

I'm so sorry you feel low. I have been on antidepressants for 24 years and am going to stay on them. They make me feel normal, I still have ups and downs but the downs are manageable. You should definately see your GP. I'm not suggesting you should take antidepressants, I'm just saying that there is nothing wrong with them.

Just remember that everything changes and you won't always feel like this. I can't add anything to the excellent advice in your replies. I hope you feel better soon , take care xx

Imom in reply to kt11

Thank you. Hugs!


Hi Imom,

I'm sorry to hear that you have been experiencing a 'flat' mood. It is not uncommon to experience mood disorders such as depression when you have a chronic condition like lupus. It can either be a result of the diagnosis and living with the symptoms, or it can be a symptom of lupus itself.

If you would like more information and advice about support services that are available, please take a look at our article here -

Imom in reply to Paul_Howard

Thank you.

kfmeme in reply to Imom

thank you so much... I am having a hard time even wanting to respond I am forcing myself... has anyone gone through this??

Imom in reply to kfmeme

Yes, I understand and I’m sure others do as well. I didn’t post for three months. I just couldn’t bring myself to do it. I thought of responses in my head but it was too much of an effort to write it and too emotional to admit. I hope your meds help.

I am so thankful for this page. I have been so depressed as well and just had to go on antidepressants... This has to get better... I understand your depression. I was just diagnosed a few weeks ago.....

Imom in reply to kfmeme

I’m sorry that you, too, are having a difficult time. I hope your meds help. Keep us posted. Sending warm 🤗 hugs.

they stopped my meds because he found a node on my liver and in my lung. Now I am in a full blow out of pain....

Imom in reply to kfmeme

Oh no! I’m sending you a hug. I can imagine how you must feel. How are they going to proceed? Surgery? I will keep you in my thoughts and prayers.

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