New to site..

Options
Amy79
Amy79 Member Posts: 19
edited 28. Nov 2023, 14:05 in Living with arthritis
Hi All. My name is Amy.

I hope everyone is safe and well. :@)

I'm new to this site but not new to RA.

I am 40 and was diagnosed almost 8 years ago. My condition has been controlled by Hydroxychlorine. Then around 8 months ago I started MXT. I was unable to tolerate so am now about to start biologics.
I'm feeling really scared and isolated. Now that my condition is so bad I am not able to function normally and am dealing with sometimes unbearable pain, I am starting to feel really low.

I have an amazing partner but she finds it hard to understand my feelings and my condition is also stressful for her to manage.

There are no support groups in my area but 8 would really like to chat and listen to people who are also living with RA and how you have found biologics?

Thank you xx

Comments

  • Brynmor
    Brynmor Member Posts: 1,755
    Options

    Hi Amy and welcome to our online Community. Good to see you join us.

    I'm sorry to hear you are experiencing high levels of pain. You can always tell us how you are feeling and we will understand what you are going through. If you need to talk to someone, you can also call our free Helpline on 0800 5200 520, or email helpline@versusarthritis.org (Mon - Fri 9:00am – 8:00pm)

    We have a wonderful website packed with information that can be helpful. Here is a page on explaining biological therapies and how they are used if some of the disease-modifying anti-rheumatic drugs (DMARDs) don't work for you:

    If you have any questions, don't hesitate to ask and please do join in across the Community.

    All best wishes

    Brynmor

  • Amy79
    Amy79 Member Posts: 19
    Options
    Hi Brynmor,

    Thank you for your response. I am hoping to be able to chat with other people experiencing the same things and hear about thier experiences with biologics.
    Really pleased I've joined. ;@)
  • chris8
    chris8 Member Posts: 57
    Options
    Hi @Amy79 apologies it's an late or mega early morning message (whichever way you look at it) :) I to am new here and also have RA so it's nice to see a new person I can hopefully chat to. There's a page on here called 'Val's cafe' that's where I most frequently visit and got to chat to a few other lovely, open and welcoming people off this site, hope you visit there and say hi :)
  • frogmorton
    frogmorton Member Posts: 29,487
    Options

    Hi Amy

    It's lovely to meet you. Shame there are no groups nearby to you - there are two near me, but i tried them both back a few years ago and felt out of place and a bit to young and I'm not young anymore 😁 I went with two other people 'met' on here though and they live close to me.

    Arthritis can feel very isolating, but this community was wonderful for me when I was first diagnosed and during times of trouble (youngest getting leukaemia for instance) too so supportive.

    When I first found it I bawled for weeks over the posts - they were so me! If you know what i mean.

    I also hang out in the café with Chris8 and some others we just chat mostly not about arthritis!

  • Amy79
    Amy79 Member Posts: 19
    Options
    Hi frogmorton and chris8... thank you both for your messages. I will def check out Val's cafe ;@)
  • Ziggy123
    Ziggy123 Member Posts: 17
    Options
    Hi Amy..your story sounds very familiar to myself. I'm was 34 when I was diagnosed with RA. It was unbearable some days..infact most days.

    I felt like I was constantly moaning to my wife..our partners experience this illness to, as nobody.. especially a loved one, wants to see there partner in awful pain.

    I was methotrexate for a year until I couldnt take it anymore. I lost so much weight due to the side effects. All I wanted was something to give me my life back. I cant even describe how annoyed and frustrated I was. Then I was put on sulphazaline, Along with hydroxquine hoping that would help me. Again no.. that lasted 6 or 7 months my anxiety level was through the roof and I was having panic attacks. I just couldn't see an end to this. Again I was taken off this and my rheumatologist dr told me about biologics.. I never heard of them, but they were very good and explained everything to me. I agreed to try a biologic called humeria that I inject every 2 weeks. That was almost 5 years ago and it has changed my life for the better. I still get flair ups now and again but my quality of life is so much better. And I dont have any side effects. The biologics worked for me. Hopefully they will for you Amy.
    good luck.
  • Amy79
    Amy79 Member Posts: 19
    Options
    Hi Ziggy123

    I really appreciate you sharing that with me, you have a very similar story to me.

    I am delighted for you that you are in a much better place and with much less pain.. yay. :@)

    I've certainly started to feel that low when my condition is so relentless. I'm ready to start the biologics but I guess having had so many horrible side effects with other drugs over the years, I feel anxious about these side effects. Of course I've done the research and am hoping for the best. I just want to feel like me again and be able to do the simple things that I struggle so much with.

    Your journey and the outcome is really inspiring. Thank you
  • Ziggy123
    Ziggy123 Member Posts: 17
    Options
    Amy please let me know how you get on when you start the biologic.
    I know your feeling low right now.
    For nearly 3 years I'd suffered myself.. pain and side effects mixed with feeling low and loss of confidence. I thought to myself there's never gonna be an end goal to all this. But Amy there is, they will get you on to the right bilogic that works for you. Plus there isnt the same side effects. I know its hard but hang in there the light will come.
  • Amy79
    Amy79 Member Posts: 19
    Options
    Thank you ;@)
  • chris8
    chris8 Member Posts: 57
    Options
    Hi @Amy79 and @Ziggy123 hope you're both well! How you finding this Amy? Hope you're liking it and it's a help :) I've been on approx a Week on here and wish I had joined sooner.
  • Amy79
    Amy79 Member Posts: 19
    Options
    Hi Chris8,

    Im finding it really inspiring. Its helping me alot to talk to others who know how it feels. I also wish I'd joined earlier but very pleased to be here now :@)
  • chris8
    chris8 Member Posts: 57
    Options
    Better late than never hey @Amy79 :) Good morning anyway, hows things? Did you try that 'Vals cafe's chat room thing out? I only mainly drop in on there when I'm on as I said :) it's certainly good though to chat to new people and more importantly those who can relate. Hope we chat more :)
  • Amy79
    Amy79 Member Posts: 19
    Options
    Hiya Chris8,

    I havnt yet.. I'm working from home and it's very busy (I'm a child protection lead).

    Had a bad night/morning with pain and mobility but getting there.

    Hope your doing well this morning?