Depression: Hi everyone. Getting to the point where... - LUPUS UK

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Depression

joannebond360 profile image
40 Replies

Hi everyone. Getting to the point where I think I might need anti depressants for depression. I get severe bouts of it and anxiety mainly around flare ups. I get stressed easily which I don't think helps lupus. Think it could be a bit of a vicious cycle! Would love a little break from it and to be able to relax. Can't watch tele or read and have no interest in seeing friends and family and think the world is against me. Does anyone take anti depressants and do they help? If so which ones?Tried amitryptiline for a time for pain etc and they made me worse and into a loonie!

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joannebond360 profile image
joannebond360
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40 Replies
Manolo33 profile image
Manolo33

Hi, I take citalopram 20mg daily. A relatively small dose so can increase if needed and decrease when ready (if ever). They have been great, they just take the edge off my anxiety and boost my mood enough to have to put less of a 'game face' on. I have stayed on this dose because I still need things to feel real - so I do still have some anxiety and still have pangs of wanting to live in a dark cave - hermit style - but can manage these with other coping strategies such as relaxation techniques.

Hope this helps. Donna :-)

joannebond360 profile image
joannebond360

Thanks Donna. Read a lot about that tablet, might have to give it a go! :) xxx

Loopylooby profile image
Loopylooby

Hi Joanne. Depression is how it all started for me when I was a teen. I was initially put on 5mg of citalopram and this helped to take the edge off. Even though I had a prescription I didn't file it for ages because pre lupus I didn't like taking tablets. I eventually started giving the citalopram a go. Stayed on it for 3 months then took myself off. 3 years later I was in a bad place again and was put on 20mg. Have never looked back! Have been on them 5 years now and after lupus flare my dosage has gone up to 40mg. On paper it sounds horrific for that length of time and having just wrote that I've shocked myself a bit but taking them gives me a quality of life I wouldn't otherwise have. My advice is give them a go and see. It takes 6 months for them to work to the max. Good luck x

Loopylooby profile image
Loopylooby in reply to Loopylooby

I should also add that I see a counsellor once a week to offload due to stressful job. Talking therapies are great but they get worse before they get better as you dig up your demons. There is no way I could have coped doing that without the medication to support me. There is a common stereotype that taking anti depressants means you are weak or inadequate or not able to cope and you should just pull your socks up - I used to believe that but looking back I've never heard anything so ridiculous! Get all the support available and grab it with both hands!

daisyd profile image
daisyd

Citalopram is wonderful, I wish I had been put on them years ago. It took just two weeks before I noticed a difference.

Lesley-chard profile image
Lesley-chard

Hi

Anxiety was one of my first symptoms worse than the depression. I took citalopram and they were really good. But after a few years they stopped working and now i take sertraline which is even better.

Hope this helps

Lesley

Malteser profile image
Malteser

Don't resort to anti depressants please, its not a fix for depression. I would opt for St.John's wort for a few weeks, and in the meantime, get yourself to a therapist who will help you, of if you don't feel like making the effort, call the Samaritans line. Anti depressants are hard to come off, and it will become a vicious circle... trust me, I have been down this route.

mstr profile image
mstr in reply to Malteser

Hi Malteser, not an expert on St John's Wort but I'm guessing that before going on them it would be wise to have a discussion with GP to ensure it won't interfere with any other meds. Also am unsure of how St Johns Wort works when in any sunshine.....again would that interfere with lupus patients sensitivity the sun? I would be interested to know this if anyone does?

Malteser profile image
Malteser in reply to mstr

Of course mstr, it goes with saying, that anything you are about to take, you check with your dr, and /or do your research. However, be aware, that most dr's are against herbal remedies... I have not had any reaction while being in the sun, while on St.John's wort, while taking both prednisolone and warfarin, so thankfully I can take this herbal remedy in SMALL doses, only when I absolutely need to, I take it in tincture form, mixed with water. I too would be interested to know if anyone has taken any herbal remedies ...

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply to Malteser

I would advise anybody to discuss taking St John's Wort with their consultant before starting it. The UK Government's Committee on Safety of Medicines published a warning in 2000 about using St John's Wort because it can have dangerous effects if you are currently taking certain treatments, including but not limited to Warfarin and oral contraceptives.

St John's Wort does also increase sensitivity to sunlight, which could lead to worse lupus flares.

Malteser profile image
Malteser in reply to Paul_Howard

As I said, yes, you do have to discuss this with your consultant, and I am lucky I can have them, which to me is far better than more pills ( chemical) to swallow, which incidentally gave me an internal haemorrhage for long used of steroids... in fact only was in hospital as of late... sometimes you have to be your own doctor too. How many people actually research the meds our consultants give us? but just take them as God's Law?? many I can assure you.

mstr profile image
mstr in reply to Paul_Howard

Thanks.....I thought I had read that somewhere previously too.

nanaber profile image
nanaber

I would say if you need them take them. Saying don't resort to anti ds is like saying don't take insulin for your diabetes. My first symptoms were anxiety and as some else said pre lupus I had no time for medication. I take 75 mg of Effexor it's the starting dose and I've been taking them for the past 6 years. I have no intention of coming off them as I have no intention of coming off and of my lupus meds.

Tonkawoman69 profile image
Tonkawoman69

Hi ya,

Well I had to resort to anti depressents evenutaully but not just for depression it also helps with neurological problems too. So with having Hughes syndrome (APS) and also suspected MS/ nerve damage I think it helps. I had to up my dose as I was getting anxious and not sleeping. I am now being transferred from Citalopram to Amtriptoline not sure Ive spelt that right? This is because I have bladder issues and a prolapsed bowel amongst other gyni and neurological issues. I feel that it help keep me on an open keel and i do feel more relaxed. But I dont think my dose is huge that I am addicted. Depression seems to always be reported as a taboo subject but it happens. I am afraid we all go through stages of our life where we feel vunerable. I am afraid if you are a woman that has experienced childbirth then its sometimes part of the package with all out hormones etc. But sometimes we do need to except help and even if only temporary. Some illness can cause depression as its life changing. Sometimes we dont have a choice and adjusting to these illness is difficult. I feel alot more positive and deal with things better, but we have good and bad days. You need to discussed your depression with the doctor he might have different ways of helping and supporting you. Even going to groups with other people who understand. I find my illness cant always been seen from the outside. People think you are ok when inside your in pain. I hope this helps. You need to know your options. TC

Andrea

Kate-L profile image
Kate-L

I've had exactly the same symptoms as you Joanne. My consultant told me I should not take anti depressants, but see a counsellor instead. He told me 'talking therapies are much better than pills'. This could be because my Lupus has made me intolerant to so many drugs that he doesn't want to give me anything unless he really has to. I see my counsellor every two weeks now and although she seems very good and understanding, it hasn't done a great deal and I still feel, on occasions, that my nerves are shot to pieces. I've got a clinic appointment on Friday and am going to discuss the anti depressants with them again. I really hope you find something to help you very soon.

Rockhopper profile image
Rockhopper

Hi,

I was diagnosed with SLE and APS 13 years ago and was in a bad place initially whilst they got me stabilised. I was put on Fluoxetine - 20mg daily. It was just enough to let me live normally again without feeling too numb. I stayed on it for 6 years and then came off it without any problems.

Recently, more worries and anxiety about other family members made me realise I was heading for that downward spiral again so my GP has put me back on Fluoxetine. Again, it's just right for me, taking the edge off the depression without making me feel like a zombie.

Hope you get the help you need.

Good luck. Xxx

Malteser profile image
Malteser in reply to Rockhopper

If I am not mistaken .. that's Prozac isn't it? I had also taken them for a few years, weaned off, and thankfully discovered herbal remedies, but do research well.

Rockhopper profile image
Rockhopper in reply to Malteser

Hi, yes, Fluoxetine is Prozac. I've had no adverse effects and came off it without problems but I know it's not suitable for everyone. I did think about taking St Johns Wort but was advised against it because it interacts with Warfarin (which I take for my APS).

helenfirebird profile image
helenfirebird

I've been on and off Fluoxatine for the last fifteen years. I take them for three to six months until my depression settles and then come off them with no problems until the next time. The shortest time between prescriptions has been three years so they work for me like that.

joannebond360 profile image
joannebond360

Thank you everyone. Will definitely discuss them at my next appointment. When I physically feel ok and having a good well spell I feel fine but as soon as I'm flaring or feeling rubbish I feel bad mentally. So horrible. Think maybe when lupus symptoms are under control it might help me mentally too. :)

Bebe76 profile image
Bebe76 in reply to joannebond360

Your pattern does point to your depression being related to lupus. Depression is listed on LUPUS UK's website as a symptom. lupusuk.org.uk/what-is-lupu... Your rheumatologist might be able to help you determine whether your depression is lupus-related and whether anitdepressants would help if it is related to lupus. Take care!

joannebond360 profile image
joannebond360 in reply to Bebe76

Thank you for that. Will discuss it on Tuesday when I go to my appointment. :)

Take care too x

JJKANE profile image
JJKANE

Hi There, I have been ill for over 20 years with Lupus, FM , ME and OA. Depression and hormones all play a huge part in the conditions. I really dislike the fact not only is my body in pain but so is my mind and those around me can do nothing help.

I take duloxetine morning and night, amitriptyline, and try to practice meditation, which I must say as buddhist I do anyway , however when flare and cycle clash the depression sets in , I look different and feel different , and the worst thing is there is nothing we feel we can do about. The most important thing is to talk to a professional as they are not judgemental, trained in our condition( or the psychological effects ) and really help, the only trouble for me is the sessions exhaust me and ME then kicks in big time. Its all about balance and admitting that this condition does have mental health issues that tag along with it ...... do not be ashamed .....seek help .... you feel so much better.

Wishing you harmony and peace and a pain free day

JJ Kane

joannebond360 profile image
joannebond360

Hi JJ Kane. Thank You for your reply. I will definitely talk to my dr about it. Very hard to live with. Love having my good days but hate the bad so much. Could literally be carted to the psychiatric ward :'(

Big hugs xx

joannebond360 profile image
joannebond360

Hi JJ Kane. Thank You for your reply. I will definitely talk to my dr about it. Very hard to live with. Love having my good days but hate the bad so much. Could literally be carted to the psychiatric ward :'(

Big hugs xx

luppychick profile image
luppychick

Sweetie am forever bursting in to tears for no reason, I cried all the way through the xfactor on Sunday, for no resason. My late mum bless her used to say we store up so much hurt its got to come out of us somehow.

Healing hugs x 2 Luppychick x

joannebond360 profile image
joannebond360 in reply to luppychick

Thanks luppiechick! I always cry at xfactor! Sometimes so hard to be positive when lupus is so negative.

Big hugs xx

Thaddeus profile image
Thaddeus

You have some very good reasons to be depressed, don't let anyone tell you otherwise.

But none the less, it pays to do everything you can to combat it.

Anti depressives do come with side effects for many, and getting a handle on your issues can pay dividends.

Exercise, relaxation, meditation and counselling can all help. A creative interest is priceless as is a sense of humour. Learning to juggle, or play the harmonic are the sort of thing you might try, the results are way beyond what you will expect.

And the right sort of company has a value beyond rubies.

Be well.

joannebond360 profile image
joannebond360

Thank you Thaddeus. What amazing advice! Would really like to try some counselling, think I bottle a lot up trying to protect my family and put in a brave face but it's getting harder and harder. Talking to a councillor rather than feeling like I'm putting on my family would be so benefical.

Take care :)

sandwiches profile image
sandwiches

I have spoken to a councillor instead of being on medication which i did not want to be. It was a big help to me as i have no one to talk to who understands the way that i feel. I had a transplant 3 years ago but everyone thinks you are alright after the op, but sometimes i have feelings of not wanting to be here. I try and pull myself together but some days i think "what's the point". i have no family of my own so some days can be hard. But there is no way i am taking any medication, i want to be in control ,lupus won't beat me.

joannebond360 profile image
joannebond360 in reply to sandwiches

I feel the same as you about medication, I am so sensitive to them all including prednisilone I think I would get all the side effects from anti depressants which would make me worse. So glad you found counselling beneficial. I too get those feelings, just get days where I fell absolutely hopeless and not worthy of living or getting better! It's good that we have this forum to talk and get advice. Everyone's advice has helped me so much. Thank you :-)

sandwiches profile image
sandwiches in reply to joannebond360

I hope everything goes well for you. Hope all advice given to you will benefit you. Sometimes it's good to talk, to get everything out. Hang on just like i am. Take care.

joannebond360 profile image
joannebond360 in reply to sandwiches

Thank you so much. All the advice has been amazing. Feeling more positive after talking to everyone. Take care and stay strong. Big hugs xxx

madmagz profile image
madmagz

Hi I am so sorry that life is making you feel so down but do feel that antidepressants should really be a last resort. Us lupies are already putting plenty of other drugs in our bodies and agree with both the points made above about St.Johns Wart and counselling. I have seen such great results from people having counselling that I have more faith in the power of counselling than I do in what drugs can do. I suppose I am a little biased it was medication that caused my SLE in the first place. I sincerely hope that you manage to find comfort from your fellow lupies here and I do know that stress does make my symptoms worse as I kept a diary from time to time over the last twenty years and found that I was hospitalised when live was going wrong - divorce, moving house and various other super stressful times. I do hope that you can get help maybe from counselling before resorting to more medications as some can be adictive.

Good luck what ever you choose I look forward to seeing positive updates,

Madmagz x

joannebond360 profile image
joannebond360 in reply to madmagz

Hi madmagz. You are right, I don't think I could tolerate any other medicine or any more side effects! Got enough going on. I'm sure how I am feeling is because of weaning off of steroids, felt like I'm going crazy! I agree stress does play a massive part in worsening symptoms and whilst tapering prednisilone. Thank you so much. Take care x

madmagz profile image
madmagz

Joanne something that I know has helped fellow lupies when they are tapering off prednisolone and been very effective is Manuka honey, I know a man who no longer takes any steroids and just has a teaspoon of this honey every morning. It is however rather pricey but for the benefits of it I would definitely say it is worth it. For Manuka with activity of +15 or more available in some supermarkets though I get it from Holland and Barrett as they include it in the Penny Sale sometimes so make the most of it, I also have a loyalty card and collect points to get money off if there is not a sale. It may help the way you are feeling I must admit I find it beneficial if taken straight from the jar not warmed up on toast or in porrige, so have a teaspoon a day.

Good luck and I hope you find something that works for you, take care

Madmagz x

joannebond360 profile image
joannebond360 in reply to madmagz

Oh wow! That sounds fantastic! Thank you so much. Holland and barat here I come :) will let you know how I get on. Xx

madmagz profile image
madmagz in reply to joannebond360

Great I'll keep my fingers crossed for you and hope you have the positive results that I know others have had.

Chin up and take care

Madmagz x

joannebond360 profile image
joannebond360 in reply to madmagz

Thank you so much. Getting some today. :) x

madmagz profile image
madmagz in reply to joannebond360

Fantastic all the best I'll keep my fingers crossed for you

Madmagz x

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