Flare ups, anxiety and depression

Deep down I know the answer to this but just after a bit of reassurance and to see how many of you feel the same. One of the first signs of a flare for me is anxiety and depression. Can't cope with the simplest problem and my head feels on a different planet, feel so sick with anxiety I can't eat and feel the world is against me. It does lift eventually when the flare goes but whilst I'm feeling like it I feel like I'm going mad! Always feel like I need to take something as it gets so bad but then it will ease again so not sure if any antidepressants or anything would help. Does anyone else feel like this?

Jo x

30 Replies

  • Me too and anti-depressants have helped stabilise my mood Joanne. Might take some experimenting to hit upon the right one for you but well worth it. The figure for chronic depression/anxiety in lupus battlers used to be c. 20% - not sure what it is now. You are definitely not alone! Hugs x

  • Hi Tigerlily. Thank you for your reply. I have gone to go to the doctors so many times about it then just try and push through it. Do you mind me asking which ones you take? I tried amytriptiline a while back which made me so groggy and more anxious.

    Jo x

  • You're welcome! I had a truly dreadful time with this initially so know how you feel. Dosulepin, which is a different tricyclic Joanne. I couldn't tolerate amytriptiline either. It's been around since the 1920s, which I find reassuring! Will probably make you feel drowsy at first so taking it in one dose before bed is sensible so that you wake clear-headed. Takes a fortnight before you see any results so worth persevering for a few weeks at least. The drowsiness wears off completely in 2 - 3 months. Some lupus battlers suffer a degree of inflammation of the brain - which sounds really alarming - but the "text book" results of which are anxiety, depression, panic attacks, phobias etc. This does not appear to be widely known, let alone understood, by many doctors (in my experience). Dr. Hughes explains it beautifully and reassuringly in an excellent pamphlet he wrote about SLE and the brain some years ago. Unfortunately my copy is in the attic but I'm sure it must still be available via Lupus UK. Good luck and let us know how you get on. x

  • I took my first one this morning as the doctor told me to take this one in the morning but an feelings so tired and drowsy. Hope this wears off! If it carries on I could ask him if I could take it at night.

    Thanks for that fab info. My consultant was explaining that to me too. Definitely makes sence!

    Big hugs xx

  • SSRIs (which setraline is) have to be taken in the morning Joanne as they apparently otherwise interfere with sleep so you probably can't switch to taking it before bed, odd though that seems. They work in a totally different way to tricyclics and I don't have any personal experience of them so can't comment further. What I'm really really pleased to hear (quite apart from you being listened-to, treated and possibly starting to feel better) is a doctor who knows his stuff and was able to explain what's going on. Yahoo! Finally, we're getting there! x

  • Yeah the doctor said they could interfere with sleep, so funny though as I could have slept all day after taking this morning! Haha.

    Thank you so much.

    :) x

  • Hi , have u tried st.johns wort for mild depression which u can stop anytime or valerian for anxiety it works really well u get both from herbal shops or h olland+barrett .check with gp if u need to otherwise good luck x

  • Please speak with your GP if you want to try St John's Wort. It can increase sensitivity to sunlight and interact with warfarin. There are other potential effects, but these are important for people with lupus to bear in mind.

  • Thank you for your replies

    Jo x

  • hi jo , ive been on anti depressants for 7 years now and only got my lupy diagnoises 4 years ago im on citalopram ,i was very warey at first but they do work they do help with moodiness, the butterflys and anxiety, i was on 60mg at one time im now down to 30 mg i used to be embaressed about it , but my friend said how can you be , your body attacks it self that in itself is alot to take in without all these meds and no cure/side effects lupus tricks , research yourself it may help

  • Hi, I hadn't thought about the depression signaling a flare, but maybe it does for me too, I go through feeling quite manic and often compose rants about everything which is wrong with the world and my family - which I have mostly learn't not to act on ! but I also feel like I am either crazy or the rest of the world is! Then I get exhausted etc then often sick and migrane and so on..... no you are not alone! hugs xxxx

  • Thank you so much! Have an appointment in the morning with the gp, think I will give anti depressents a go, citalopram seems to be the most popular one. Feel better for hearing from you all.

    Jo xx

  • Hi Jo, I usually get a temperature and then feel depressed prior to a flare up coming on. Like you I have asked if I need anything but the depression lifts (usually as the flare progresses) and I don't want to/or need to yet take another med. For me meditation helps, relaxing CD (not noisy), peace and quiet etc. It's a difficult one and like you I have thought about anti-depressants at times but in between the flares I'm ok. It would be interesting to hear how you get on as I never say never with this condition as things change daily. Take care xx

  • Interestingly, about 6 years ago, I had the weirdest lupusy thing happen (a massive swollen eye... Not eye ball, just around... Looked like a pirate). Someone said maybe its an allergy, go home, take 2 Benadryl and see how it works. Stupidly, I did. Stupidly because it couldn't have been an allergy... It was only one eye. Funnily, while I was on the Benadryl (after feeling nausea and then falling asleep for 2 hours), I had never felt better in terms of inner anxiety.

    Found out by my GP that Benadryl has a similar effect as antidepressants and I have been on them ever since. Had no idea how anxious I actually was until I didn't have it anymore!!!

    Turned out my poor little girl also had it but it manifested itself through "ticks" which are turrets that cycle. I got her on meds too and they went away.

    We are now 6 years medicated and way more emotionally stable!!! She on celexa, me on Paxil, then cymbalta, and now ciprilex.

    Hope all works out well with you!!!

  • Thank you, you are all amazing on here. Everyone's replies really help, don't feel so alone :)

    It's hard to know what to do, I don't want another medicine to take but can't handle feeling so dark and desperate! It's horrible, don't look forward to anything and the anxiety cannot be helping with the lupus, like a vicious cycle! Just need a break!

    Jo x

  • Gp has given me setraline, does anyone have any experience with this anti depressent? Filled out a questionnaire and scored high for anxiety and depression :( doctor was very understanding. Just can't deal with more side effects from drugs! Will give them a go.

  • Well done Joanne for biting the bullet and speaking to the GP about this, it's not always easy talking about low moods and we really shouldn't be concerned about taking meds for what is after all another symptom of this illness. We tend however to think of the stigma attached to mental health and particularly depression, I hope the meds help and you don't have any side effects.

    Take care

  • Hey Slowmo

    Thank you so much. Feel so much better for talking about it with you guys in here and the gp. Taken the first tablet so here's too feeling bit better :)

    Jo xx

  • Doh ... answered before I read the end of the thread. Hope the setraline works for you Joanne!

  • Good for you Jo......your post will help so many too as it shows us it's ok to get help. if we had a broken leg we would have it in plaster so depression is just another illness. I really hope it works well for you:) xx

  • Hi mstr. Thank you so much. It really is a horrible thing to deal with. Talking to you all on here is such a great help.

    Jo x

  • Hi Joanne

    I am so sorry to hear you are suffering like this. I really hope the tablets help you, has your GP suggested counselling too?

    I have had some very dark times with my lupus over the years, & like you I know a flare is coming when my mood changes. I have also noticed that pre-flare I become very obsessive about apparently insignificant things which will go round & round in my head & drive me bonkers! Fortunately I can recoginise these symtpoms now, & work my way through them as best I can. Or just hunker down until the worst passes.

    I have multpile drug sensitives so anti-depressants were not an option for me, but counselling really helped. You will probably find that the people you speak to in this process only have a basic knowledge of lupus & all it's implications, but this can work in your favour. As you have to explain it all to them, you will realise that you are actually an amazingly strong person to live with all this.

    Take good care of yourself, Roobarb. X

  • Hi rooberb. That is exactly what happens to me. I become a completely different person, paranoid, real bad anxiety, think over and over Things and stupid situations that happend years ago. I can't talk to people or face anything, really dark place and am just filled with dread and panic. I also convince myself that I'm going to die or my children will, absolutely awful. I often think I will ride it out and know it will eventually lift but I feel absolutely desperate when I'm like it and it really can't help with the flare. I absolutely hate the fact that I have to take anti depressents but this particular bout was awful and I just couldn't cope. I probably will struggle on anti depressents as I am sensitive too to most medicines too, prednisilone makes me crazy! Just want to finally try something to see if it helps.

    Thank u so much

    Jo xx

  • hi joanne..

    hope that u find good relief out of the meds.i'm happy to say that atleast a few of us are scared of prednisolone,phew...i hope someone finds a better cure for our emotional and mental meltdowns along with our medicine bundles.

  • Hi Joanne, I'm on citalopram 20mg and it has definitely helped me with anxiety. Amytriptaline didn't work for me either - made me groggy and out if it. I have to watch as with citalopram and Diclofenac they act as a blood thinner which is ok as I'm not on any other thinners.

    Hope something works for you - plenty of us suffer from anxiety and depression with or without lupus.


  • Hi Donny. Glad they have helped you. Citalopram sounds like a good one. I lasted two days on sertaline, kept me up all night and felt absolutely awful on them. So sensitive to those sorts of medicines. Decided to go to counceling and try doing gentle excersise to do it naturally. I find if my lupus is under control so is my mind. Will just sit out the bad days and remember that there is better ones round the corner.


  • Hi

    Yes, I too get this and I am on antidepressants sorry to say but I have had this problem for years even with the tablets just hang in there and know that once the lupus settles down so will your head. Take care

  • Thank you so much angus. So horrible isn't it? We do have to put up with a lot.

    Take care too

    Jo x

  • Hi joannebond360, sorry for replying so late but seem to have missed your post previously. Just thought I would say that all my problems began with anxiety....well I have actually had lots of symptoms for years but the anxiety was so bad that I went to the GP 2 years ago and I ended up on Citalopram for anxiety related to PMS. A year later even more symptoms started emerging, antibodies showed up and now it seems the anxiety is likely to be linked to that. The citalopram has helped but I do find that flares are often linked to a low mood. I am hoping that treatment will bring the whole thing under control and my mood will be less eratic too.

  • Hi madlottie. Thank you for your reply. It is definitely linked to lupus activity for me, really monitored it over Christmas been suffering from flare ups all over Christmas and new year and been very low and anxious. It is one of my worse symptoms. Days I'm physically feeling good I am mentally good. Like you say once the lupus is controlled im sure the depression will be too.

    Here's to a new year and hopefully finding a treatment that works for us :)

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