really struggling

I have been struggling with anxiety and depression for months now. I have had a lot of problems with not tolerating medication, methotrexate, leflunomide, and I have had steroids at different times. On Tuesday I had my first injection of Enbrel. Yesterday I felt so depressed and tearful can having Enbrel make depression and anxiety worse? I am on a steroid at the moment a very low dose which I am reducing. I spoke to the Dr earlier to say how bad I am feeling, she suggested increasing the antidepressant I am on, which they already did a few months ago. I thought she might suggest the need to look at whether it is really helping me or not. I have been on it since 2008 when I was first diagnosed with RA. Then she said I could go to the local counselling service. The psychologist at the surgery costs £60 apparently there is no counselling on the NHS. I went to the pain clinic 3 weeks ago and now have to wait a month to go again. I asked her if there was any support through a mental health team, she said she could write to them, which I guess means you have to wait weeks. I asked her if the drugs for RA can cause/add to depressive symptoms. She said it was possible. I have had times in the past when I felt depressed and anxcious so wonder with my nature and all that has happened with the RA getting worse, treatments not working and making me ill, and trying to cope, is it that maybe the way I am feeling just can't get better. There just doesn't seem to be any support for all the other effects of having RA. Maybe the Dr's just think well you've got a chronic disease what do you expect we'll give you drugs but the rest of it you have to deal with yourself. A year ago my rheumatologist actually said to me that he doesn't 'do stress'. I've got a book about RA and in it it suggests this team of people you should be able to access when you get diagnosed. Well that just isn't true, at no time has the rheumatology dept said right you've got RA this is the support you can access we will regularly check to see how you are coping with the impact of RA on all aspects of your life.. No one has asked me about how I am coping with the impact in different areas from having RA. It seems that unless you say you are desperate no one would think to ask. your family have to pick up the pieces and ask for help that just isn't there, or by the time there is any help things are acutely bad. Surely the hardest part for people when they are ill is to sort out things for themselves and they need to have people there to regularly check on there needs. Well, maybe some people have thoughts on this. thank you for listening and take care all you RA warriors.

12 Replies

  • Hi maywing,

    So sorry to hear you are feeling down, I do hope that the community here will be of help at this time. Don't forget that our Helpline team are here if you need them on 0800 298 7650 (Mon-Fri, 9.30-4.30) so do give us a call today if you get the chance.

    Best wishes,

    Ruth Grosart

    NRAS Digital Media Coordinator & HU Admin

  • I've heard that inflammatory arthritis can actually cause depression, not just because its effects are depressing, but because of the biochemistry of the disease itself. And many seem to find that biologics can really help with that side of things, though of course they take time to kick in. I so hope that Enbrel helps with your depression as well as physically.

    Did the person you saw at the pain clinic end up writing to the mental health team about an appointment for you? Even if you've got to wait, which is not great I know, at least you could get some quality support eventually through that route.

    If you are desperate, tell your rheumy. Or the rheumy nurse. Or your GP. Or all of them. I'm saying this although if I was really down I know I'd find it difficult to come out and say it. But that is something you can do, tough as it is to admit to feeling depressed and to ask for help.

    Incidentally, I usually tolerate drugs well but Leflunomide was the one drug that did make me feel a bit anxious I think. I really didn't like it.

    But whatever's causing your depression, you have a depressing disease and there's help out there somewhere. When resources are scarce it is, unfortunately, a case of 'he (or she) who shouts loudest ....' Please get shouting, it's horrid that you're suffering like this. Wishing you all the best.

  • I do believe that a lot of the depression has to do with either the constant pain, the diagnosis or the disease itself. Your mind is not good when your body is not good and vise versa. I finally went for treatment after being in so much pain for so long that I did not want to live anymore. When I felt physically better, my depression got better. I am not at 100% and I am not sure if I ever will be but I can have hope now that I might someday!! Hang in there, meds are trial and error and you might have to try something else yet again! I cannot afford anything but MTX and prednisone although I have prescriptions for all else.

  • Hi may wing

    I can totally get where you are coming from as my experience is the same. I've been diagnosed for 11 years now & I feel I've had a bad experience at hospital. My rheumatology told me he only deals with the active disease & not the damage its caused to my body. Over the years I've gradually got worse but it's affected my mental health over the last 4 months. So much so that Im off work. I recently started Rituximab infusion & was told I would need another following my next flare up. I had a flare up when I had the infusion & still am so how do you know?

    I found the occupational health nurse to be fantastic like she asks me how I am & seems to understand. Have you seen one? Got equipment for making life easier such as wrist splints.

    I agree we should be treated as a whole person. Good luck.

  • Pain is draining, not only to our physical health but to our mental health as well. In addition how you think will make the depression worse.

    I have noticed the difference since I changed my view of what I am unable to do to what I can do. I am unable to stand for any length of time to do vegetables for a meal, I can sit and do those vegetables for dinner, it may take me all morning to peel and chop with very frequent breaks and the longer it goes on the smaller gaps are for veg and longer gaps for the rest. The picture I have painted may not be to your taste but you can see what I am trying to say.

    In addition painkillers give us what we all call 'brain fog', again this does not help with our minds, and we all hate to have to take drugs and when they don't work or our body hates them that brings us down. We have to fight all the time, and you will get to a place where you are happy again.

    Just give the Enbrel time to do it's job, I am on Enbrel and once it got into the system and started to do it's job my mind became easier and that's when I started to think of what I can do now rather than what I am unable to do. We have all been where you are and some of us take that but longer to come out the other end.

    I am fighting myself at the moment as I have been diagnosed with Diabetes this week to add to my woes, but mine is more anger, as I have lived with the threat of this for years and changed my diet but still it has arrived. I visited Podiatry this morning and as she says, you were fighting a loosing battle, as people with Psoriasis have the potential to get this disease. I said I know that's why I am angry. I can only conclude it's because I no longer am able to move and do as much as before.

    Sorry this was not meant to turn into rant and moan, but to encourage you. Take care. xx

  • I'm so sorry that you are feeling so low, I have suffered from depression for years, and this wretched disease makes it worse.

    I know from experience how difficult it is to ask for help when you are so low, withoutally when you have been put off before. But it's true that the squeaking wheel gets more oil! It sounds as if your gp is less than helpful, but you need to insist that you need help, and if he can't or won't, then referral to a mental health team would be a good first step.

    Counselling is available free on the nhs, waiting lists are often long, but you gp can refer you. I have had psychotherapy myself, and it heped a lot

    NRAS have a great helpline, sometimes it can help just to talk to someone, and they can also advise you how to access appropriate treatment

    Please don't give up, there is help out there, the shameful reality is that you often have to fight for it. But it is worth fighting. I'm lucky in having a brilliant gp, I don't think I would still be here without him.

    I do hope that you get help soon. Do keep in touch luv M x

  • Hi - I too am struggling with possible drug side effects - every drug I take seems to give me too much grief so I know exactly how this makes you feel. It's horrible. I don't suffer from depression per say but I am on another anti-depressant and I do have counselling from a charity that was set up to help people with drug and alcohol problems. Increasingly this charity are picking up the people who our local community mental health team will not take on because their depression is secondary to a chronic illness. My GP was happy to refer me and it took a while to get my first appointment - a few months I think. The counsellor is good and fits me in for extra slots if she gauges that I'm not doing so well or suffering from another drug. She lets me off load about my medical stuff and drug issues and I find this really helpful. She also advises me well sometimes about what to say to consultants and how to handle this whole medicalisation of my life better.

    Have you checked out to see if there are any NRAS groups in your area or self management programmes for people with long term conditions? You might find this very helpful while you wait for counselling to start?

    My drug latest is Duloxetine which I'm taking with Naproxen. I've just moved up to the next dose today and I feel numb mentally (zoned out) and physically which is a bit scary. I've had a very sore tummy for weeks now and am barely eating as I seem to have lost my appetite and am terrified of making my tummy pain worse. And yet somehow I've put on a few pounds and looked this up and seems weight gain is a side effect as well as anorexia. I promised my GP I would give it another week - it's not meant for depression in my case but for progressive small fiber neuropathy - cause as yet unknown. We are running out of options he says and this depresses me in itself. I'm not on any RA drugs currently because I couldn't tolerate the three DMARDs I tried. I feel full of inflammation (ESR was 55 a few weeks ago) and yet my joints are all okay. All this takes a huge toll on my daily life so I completely understand how frustrated and fed up you must feel. Hope the Enbrel starts to work soon - hang in there.

    Twitchy x

  • Sorry to throw another factor into the equation but for me it is also the anti-inflammatory drugs that can cause depression. I am OK with normal ibuprofen but some others have a very negative effect for me - Naproxen, Fenbid and Diclofenac. Do you have a rheumy nurse you can speak to as they can usually help better with rheumy effects which can include pain and depression than a GP. Some hospitals have a number on their website for a helpline. Farm

  • Hi Maywing, I totally understand where you are coming from and it is very hard to access help. I believe everyone is entitled to a course of talking therapy on the NHS. You shouldn't have to pay £60 for a session. Also, there are lots of voluntary organisations that offer support with a sliding scale of fees that suit your budget. You may have to wait for a while but hang on in there. I had to argue for support as I was interviewed and told it wouldn't help me. My GP was very good and tried again and argued on my behalf. It is a scandal that mental health services are so poor in this country and underfunded in the NHS.

    As for other services, again, I agree with you. Five years in suffering with RA I am finally getting some physio, hydrotherapy and alternative treatments. This mostly because the drugs haven't worked for me and they recognise things are very hard. I think you have to be persistent and insistent. Best of luck and keep on trying.

  • Hi

    Sorry to hear you're struggling, I know exactly how you feel. I was in the same position as you and my GP signed me up for a course of CBT which was free. Google NHS Choices for CBT and that may give more information although it does say that it's not free in all areas but you may be able to find some online free resources.

    I'm just waiting to start on Enbrel so I'll let you know if there are any addition effects.

    Best wishes

  • This is the first post I've read on the internet that I've really connected with. I understand how you feel completely. Sometimes I feel like the medication takes more of a tole on my mental health then the diseases themselves. If you would like to vent more, please free to chat to me :)

  • Hi maywing,

    so sorry to hear that you are struggling so much. As Ruth_NRAS suggests, please do give us a call on the helpline if you need to:

    0800 298 7650 Monday - Friday 9.30am - 4.30pm

    In 2010 the Government announced plans to make psychological therapies more widely available on the NHS and if referred these are free. I have put a link to the section on the NHS website about this:

    However, as we all know these things do no always happen. I have put a link below to a list of helplines for people who are struggling to cope with mental health:

    But please feel free to call if you need to.

    best wishes

    Beverley (NRAS Helpline)

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