Struggling to cope physically and mentally with my arthritis

Sophie98
Sophie98 Member Posts: 27
edited 11. Feb 2020, 07:18 in Living with arthritis
Hi,

I've had extended oligoarticular JIA since I was 9 years old. I was on various medications until I was 18 ( I went into remission). It relapsed just after my 21st birthday in February 2019. Due to having to be referred back to rheumatology and complications I wasn't able to start medication until the end of September 2019. I was started on tocilizumab which I had never had before and it failed, sulfazalasine was introduced to try and help it along but it didn't work. My gp now thinks I have a stomach ulcer due to the fact I was on ibuprofen all day every day before being prescribed etoricoxib in October. The etoricoxib can't be stopped either because even one night without it leaves me in agony and unable to manage. I'm back in at the hospital on Thursday to discuss switching the tocilizumab to abatacept. I've honestly never felt this low in my life and even though I've dealt with the arthritis before I just keep wondering whether this is just going to be the way my life is now. My dad has also had arthritis from a young age but whilst we talk about the facts and what's going on physically, we're not ones to talk to eachother about how hard it is mentally. I guess I'm just writing this to talk to people who understand what it's like cause even though I'm surrounded by people who are there for me, I feel so alone.

Comments

  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Sophie98

    It’s lovely to meet you and welcome you to the Versus Arthritis online community. I am so sorry to read your story and how much your JIA is affecting you both physically and emotionally. It’s very upsetting to hear your medication is a) not working well enough and b) past medication may have caused extra issues for you.

    Arthritis can feel very isolating, as you so rightly say, even for those of us surrounded by support. It is good to have your Dad who understands the practical stuff, the pain and physical struggles. I wonder though, whether you both might worry about burdening one another with the emotional part of it.

    The members of this community are here for each other wholeheartedly ‘getting it’ and without any need to feel guilty for our feelings. Coming here and unburdening ourselves to those who understand can be an amazing support like no-one else in our lives can be.

    I’m not going to try to teach my Grandmother to suck eggs by posting you lots of links to information you no doubt already know, being an old hand, but it might be an idea to take a look at this:

    https://www.versusarthritis.org/in-your-area/

    Just pop your postcode in and you’ll see what Versus Arthritis activities are nearby (comes up in alphabetical order ATM sorry). There might be stuff going on which could help such as courses to help deal with long term conditions.

    I would also like to give you our helpline number:

    0800 520 0520 in case you want to have a chat to someone. It’s open Monday to Friday 9 am until 8pm.

    https://www.versusarthritis.org/get-help/

    Please do keep in touch

    Ellen
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Welcome Sophie, and I'm sorry to hear you've had to go through so much at a young age.
    I would wholeheartedly second what Ellen says
    Coming here and unburdening ourselves to those who understand can be an amazing support like no-one else in our lives can be.
    Just getting things 'out there', rather than endlessly churning around inside the head can be quite a relief, and there are many wonderful 'regulars' on here who can be relied on to offer virtual hugs, and messages of support - I speak from experience as a grateful recipient of that care on several occasions!
  • N1gel
    N1gel Member Posts: 93
    edited 30. Nov -1, 00:00
    Hi Sophie, Ouch!

    But you express yourself well, that's a start believe me, it helps to understand things. Writing, or anything creative is good for distracting yourself.

    I did some Cognitive Behavioural Therapy last year and I now understand that it's my thoughts (about the future) are leading me along a certain track to emotions I don't want. So if I catch myself having those thoughts I imagine myself getting off that train and back on the platform.

    I'm no psychologist so I can't recommend this for someone I don't know but it might be worth asking about CBT.

    I was diagnosed with a life altering illness aged 16 so I know something of what it's like at your age (that was a long time ago btw, and I'm still here!).
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Thank you all so much! I saw my rheumatology consultant today and we agreed to keep the sulfazalasine going but to swap the tocilizumab to abatacept and if that doesn't settle things down add leflunomide in alongside them so fingers crossed it improves. He did a steroid injection into my wrist and said that for the mean time we'll just have to inject the joints that become unmanageable. It's been one of the longest and worst flares I've ever had and he says I've been unlucky and it shouldn't have been this way. I really hope this works because I'm sick if my life and I really don't want to go on methotrexate again if I can help it.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Sophie,

    I'm crossing my toes for you :)

    Did you not get on well with methotrexate? I had a lot of trouble with the tablets, but I'm on injections now, which work better for me. I hope your flare settles soon; take care of yourself :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi Phee,

    I originally started out with a high dose of the tablets which was fine then got swapped to a low injection dose which was also fine but then when it was increased it started to make me sick. When I was eventually moved back to a lower dose of the tablets they used to make me feel really sick and I hated taking them. I was only 10/11 at the time and I think most of it was in my head, it used to take my parents 4 hours to get me to take two tablets. Ever since then I just can't stand the thought of going back on them.
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    I hope it works too and quickly. Flares are horrible things and the uncertainty about will-the-meds-work-or-won't-they just adds to the stress.

    I doubt meth would be suggested again but, if it is, remember that was then and this is now. You are a different person now to the child you were then.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Sophie,

    I'm sorry about all the sickness on the methotrexate. Your parents sound amazing, and I hope things improve soon :)

    Best wishes,
    Phee
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Hi, I got a copy of the letter that my consultant sent to my gp today. It says that methotrexate is an unlikely option which is a relief. I'm waiting for my specialist nurse to ring to arrange an appointment to discuss switching my tocilizumab to abatacept. I keep worrying that nothing will work which I know is stupid because there's a lot of other options should it not work but I can't help it. I feel a bit better now that there's a plan in place and we can start working towards that. Just got to persevere until then. Thank you all for the support, it feels good to talk to people who understand how it feels.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Yes, it's good to have a plan. I've changed medications over the years, and I've found it all a bit overwhelming at times, but at the moment I'm on a combination that works. Very best of luck with switching from tocilizumab to abatacept, and with coping with things in the meantime x
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Thank you!

    All the best to you too! My dad has psoriatic arthritis and he has good control at the moment and my JIA mimics adult onset psoriatic arthritis so
    I'm hoping for the same.
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Thanks, Sophie :)

    I got my psoriasis from one of my (late) granddads, but no one knows why the arthritis element turned up. I'm a bit of a black sheep in my family! I hope you're having a good weekend x
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Some of my dad's side of the family have dry skin but haven't been officially been diagnosed with psoriasis and none of them have arthritis either so we're not too sure where my dad's is from. Plus he got the arthritis way before the psoriasis. So far it's just me and him. The only useful thing is that we're on some of the same medications so if one runs out, the other usually has some spare :lol:

    Hope you're doing well x
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Spare meds... handy! :lol:

    Genes are funny things. Granddad had hardly any psoriasis; I've got off fairly lightly with the skin problems too, apart from a flaky flare-up when I was 5. My arthritis came 7 years after the flare, but I suppose you can never know when things start brewing...

    I'm a bit worn out with work lately, but I'm managing to carry on, looking forward to quieter times. I hope you're well too x
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    I've escaped the psoriasis so far so I'm hoping it stays that way. They only say my arthritis mimics adult onset psoriatic arthritis because of the way some of my joints are and there's been some tendons affected. I can 100% relate about hoping for quieter times, it feels like you're expected to go on as normal even when things are at the worst. It's true when they say the world doesn't stop moving even when you're not feeling up to carrying on as normal. I have two bottles of sulfazalasine at the minute, one is mine and one is my dad's because he has loads of the stuff :lol: . Swapping to abatacept is underway so hopefully will be sorted in the next 3-4 weeks. There is the worry that I'm running out of options since I'm on my second dmard and fourth biologic but they've mentioned that if this doesn't work that it might be worth restarting infliximab which worked well in combination with sulfazalasine a few years ago. Rheumatology nurse was like "we really need to get you sorted now" which I am fully onboard with! Really wish there was a solid deadline of when remission will be so I could feel like right I'll manage until then rather that just having to hope that something will work but that's life I suppose.

    All the best x
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Genes are indeed odd things. My mother's side of the family donated the eczema and asthma which plagued my childhood (this was back in the dark ages before steroid creams and inhalers had been invented) and my father's psoriasis which explains the onset of my PsA when I was 37. Neither parent was troubled by what they passed on.

    I am thankful that by the time I was sixteen medical knowledge had improved to such an extent that it was known why things 'ran' in families which enabled me to decide that the race had hit a dead end with me. There is undoubtedly a genetic aspect and indeed the junk can skip a generation which is all fine and dandy for that generation. It can also start out of the blue, without any genetic history, nobody knows or understands as yet the reasons behind that. In females pregnancy is a trigger - one of my friends was disgustingly healthy until she gave birth, within six weeks RA was roaring through her.

    When it comes to good health life is a lottery, one which the desires and wants of others force us to play. You don't know you've won it until you've lost it and in my case I was never in with a chance of winning. I often wonder what it would be like to wake up one day and feel as many of my friends do: refreshed, energised, pain-free. My conclusion is it's a terrifying prospect. :lol: DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Just to add to the genes conversation...

    I was first diagnosed with Stills Disease at 15. For years the docs tried to make it fit the PsA pattern because my Mum had psoriasis (but no arthritis). My body refused. It's now officially RA.

    We inherit a tendenct to autoimmune diseases not any specific disease. One of my sons is coeliac.

    DD I'm sure you'd cope with health as wonderfully as you cope with ill-health by applying your eminently sensible, but slightly adapted mantra of Adapt, Believe, Compromise Nothing :lol:
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    The genes conversation continues, as Phee ushers in one of the John Hopkins from the pathology department of the Johns Hopkins University. He reads from his clipboard as follows:

    "Clinical and epidemiologic evidence as well as data from experimental animals demonstrate that a tendency to develop autoimmune disease is inherited. This tendency may be large or small depending on the disease but, in general, close relatives are more likely to develop the same or a related autoimmune disease."

    I don't know much about autoimmunity; this just popped up when I googled 'tendency to inherit autoimmune disease'. It turns out that JH has a website dedicated to the uni's study of autoimmune diseases: https://pathology.jhu.edu/autoimmune  :shock: (quite a lot to read there!)

    Sophie, very best of luck for the swapping to abatacept. It's good that you already have an alternative option in case you need it. For some of us, the road to an effective treatment plan can be very long and full of wrong turns, unfortunately. It can be hard to stay positive during these times, but it sounds like your rheumatology nurse is keen to help, which is good too.

    m0150
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Thank you,

    Saw my Rheumy yesterday because my hip which I've had a bit of discomfort in for a while has become really painful. I was given another steroid injection to hopefully reduce the pain a little for the next week or so.

    He's decided on a different approach to treatment, instead of adding in meds one by one we're adding them all in now then once things are under control, weaning off some of the medications until we've got the balance of control on the least medication possible. Which means, I'm on sulfazalasine, I started leflunomide yesterday and just waiting on the changeover to abatacept from tocilizumab.

    He's also decided he wants an MRI of my spine and pelvis because he thinks there may be inflammation in those areas since I have hip pain which extends round the back. I have the HLA-B27 gene and what would you know, my dad also has ankylosing spondylitis :lol:

    Praying that this is the light at the end of the tunnel :)
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    I hope so too, Sophie. Please let us know how you get on.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    You're welcome, Sophie. Very best of luck with the latest treatment plan and the MRI x

    Ah, genes again. Well, I've just remembered that my dad, late granddad, and I have/had the same length of leg. We discovered that while shopping for recliner chairs. Happy memories there :)
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Good luck, it can take a while to find the right combination to control matters and I hope that this time it happens for you. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Sophie98
    Sophie98 Member Posts: 27
    edited 30. Nov -1, 00:00
    Thanks!

    I'll be sure to let you all know how it goes!