Etanercept

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Kirat8
Kirat8 Member Posts: 7
in Living with arthritis

I’m looking for advice about Etanercept. I have had RA for almost 10 years now and I have not yet been on a medication which has really worked at controlling it. I am currently living on steroid and painkillers (not ideal). My consultant wants me to start Etanercept injections. I’m sorry anxious and worried about making this change with COVID in the world. Can anyone offer me some pearls of wisdom?

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  • Anna
    Anna Moderator Posts: 968
    edited 14. May 2021, 09:25
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    Hello @Kirat8 and welcome to the online community,

    You’ve had RA for almost ten years and have yet to find a medication that controls it. Your consultant wants you to start on etanercept injections but you’re worried about making the change with Covid in the world.

    It’s understandable that you’re worried about making a change in your medication, especially after the year we’ve been through. It can take a while to find a medication that suits you, but who knows, this might be the one that will help control your RA. There may be members who use this medication and will share their experiences with you - meanwhile perhaps the attached information leaflet from Versus Arthritis about etanercept may help allay some of your fears. You can read it on here : https://www.versusarthritis.org/media/23536/etanercept-information-booklet-april2021.pdf

    You might be reassured to know that the injections come in pre-filled syringes so are completely sterile and safe, and after instruction, they can sometimes be self-administered or administered by a member of the family.

    Do let us know how you get on,

    Anna ( Mod)

    Need more help? - call our Helpline on 0800 5200 520 Monday to Friday 9am to 6pm


  • Davy
    Davy Member Posts: 7
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    Hi, I hope I can help some as I'm on a Etanercept called Erelzi.

    I've had RA for 5/6 years and went down the road of Methotrexate, Hydroxychloroquine and Sulfasalazine.

    None of them did much good, then I was put forward for biological treatment. I had to get tested for suitability. I then got "trained" to self inject with a pen and was given many pages to read when I got home. I take this once a week, but was told to stop for a week or so, if I'm compromised with any viruses.

    Been on this a few years now and I still have bad days and not so bad days.

    Hope this helps

    Davy

  • Kirat8
    Kirat8 Member Posts: 7
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    Hi Davy

    Thank you so much. Hearing the prospective of someone on this kind of medication is really useful. Have you experienced any side affects?

    When you say there are bad days compared to the previous medications which would you say has given you a better quality of life?

  • Davy
    Davy Member Posts: 7
    edited 14. May 2021, 23:20
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    Hi, I hope I didn't sound too negative about the Etanercept medication that I'm on. Compared to the previous medication, it is like night and day in some respects.

    Methotrexate: despite having some decent effect for my RA, it was giving me a high liver ALT count and even today, I'm still awaiting a biopsy on my liver, for the Gastroenterology dept. to explore further.

    Hydroxychloroquine: This caused mouth and face ulcers, as well as affecting my eyesight and my body just didn't feel right, so despite giving it a chance, I knew it wasn't for me.

    Sulfasalazine: This was the least effective medication for me. I found myself having to take more pain killers (co-codemel) and during an appointment with a Rhuematologist, he put forward the option of having a biological drug. I eventually stopped taking Sulfasalazine, after taking Etanercept for a month and that was mostly my choice.

    This was the first time in ages that I didn't have to swallow Dmards every day.

    Despite being on Etanercept, I've never experienced any side effects, but I still struggle some days with stiff knees, fingers etc. Other days, I might have sore elbows. To be honest, I get by knowing I have experienced terrible pain, so bad that I couldn't sleep. Having this medication has improved things significantly for me, because I'm only too aware of life without it. So I struggle with my joints a few days a week and a few days where it's better. I've already told my Rheumatologist, that I believe this is as good as it gets. He offered to try other biological treatment, but I declined.

    Another important point I should make is, I also suffer with Fibromyalgia and in the last few months, I have been taking Amitryptiline and Pregabalin daily. This has helped to reduce my muscular pains and I get a decent sleep.

    Another important point, is that I was put on the shielding list, due to the immunosuppressive Etanercept treatment with also having type 2 diabetes. I don't believe that shielding from Covid would have happened, with some other drugs like Sulfasalazine, but I could be wrong.

    Hope this isn't too long a post, because I can waffle on a bit.

    I also hope I've answered your questions correctly, as taking a biological drug is still a big decision and you may need to keep a good space in your fridge for storing the pens.

    Take care

    Davy xx

  • Kirat8
    Kirat8 Member Posts: 7
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    Hi Davy

    Your feedback is really useful and I appreciate you sharing. I hope you’re in a good place now. I wish you all the best x

    Kirat x

  • Brynmor
    Brynmor Member Posts: 1,755
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    Thanks @Davy that was a really helpful post regarding your experience.

    Best wishes

    Brynmor

  • Davy
    Davy Member Posts: 7
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    Thanks everyone, it's a lovely forum with lots of info and I'm only too happy to be a part of it ☺️

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