About to start on biologic adalimumab

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Sample
Sample Member Posts: 5
in Living with arthritis

Hello

I’m new to group (55F). Diagnosed with RA and fibromyalgia before Xmas. Have tried Methotrexate, Sulfasalazine and Leflunomide but all either elevated liver or awful side effects. I can tolerate and am still take hydroxychloroquine. NHS will start biologic in few weeks (adalimumab) and I’m very nervous! Worried about side effects and immune system. Maybe because I’ve had so many fails I’m scared this will be no better, and the pain and uncertainty are making me a little anxious! Anyone let me know their experience of this medication please. Thank you


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  • Ellen
    Ellen Moderator Posts: 1,628
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    Hello @Sample welcome to the online community.

    I see you are about to start taking Adalimumab and are understandably anxious having tried several other medications already without success.

    I will not bother you with information about the drug as l am sure you will already have been supplied with that by your rheumatology team, but have done a 'search' for you for recent posts which should be relevant:


    https://community.versusarthritis.org/search?query=adalimumab&sort=-dateInserted&scope=site&source=community

    One of our 'regular' posters @jamieA takes the same medication and may be able to give you some reassurance.

    Do keep posting and let us know how you get on

    Best wishes

    Ellen.

  • jamieA
    jamieA Member Posts: 711
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    Hi @Sample

    I know we are all different in how we react to our health issues and the treatments we receive so can only offer my experience. When I developed psoriatic arthritis rapidly in late 2020 I was initially put onto sulfasalazine which didn't work. The medics added MTX 3 months later and the combination didn't work. Nine months after the diagnosis the adalimumab biosimilar Amgevita was added. Within 3 weeks I could feel a difference and after 2 months I was able to hand back the elbow crutches I'd needed to let me walk. For the past couple of years I've been able to walk my dog 50-60kms a week - albeit with a limp as my left knee was damaged during that first year.

    So in comparison with how I was at my worst the combination of the 3 drugs has helped considerably. I'm not cured but I'm functional. On a scale 1-10 - 10 being worst - I'm probably a 2 or 3 presently. My discomfort has increased recently and I'm being tested to determine if my system is generating antibodies to adalimumab - which is something that can happen. At it's best I'd have said I was a 1. I'm very aware that my immune system is compromised and take the necessary steps to ensure I'm careful and don't leave myself open to infection. Make sure your GP has noted on your health records you are immunocompromised. I take my covid/flu/shingles injections.

    I hope it works for you.

  • Sample
    Sample Member Posts: 5
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    Hello @jamieA

    Thank you for your reply. Can I ask did you have flu vaccination while on adalimumab? I have few weeks waiting for hospital appointment when I’ll start, so not sure if I should get vaccinated now before I start or wait until after. Any advice?

    Thanks 😊

  • MaxA17
    MaxA17 Member Posts: 4
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    Hi, I've tried Salfasalazine and Methotrexate. Currently on Adalimumab jabs for the last 6 months. I'm in the middle of a severe flare and they've introduced Methotrexate back into the mix alongside the jabs. No noticeable difference yet. Really struggling with fatigue and pain. Going back to Rheumo on Thursday. Fingers crossed I can get out of this black hole!

  • Ellen
    Ellen Moderator Posts: 1,628
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    Apologies for hijacking your thread @sample I just wanted very quickly to welcome @MaxA17 to the online community. Lovely to see your first post is supporting someone else.😊

    I am very glad you've found the forum and hope you'll find chatting to others in a similar position to yourself useful. It can be very frustrating getting the right medication combination.

    Good luck with your appointment on Thursday.

    Best wishes

    Ellen.

  • jamieA
    jamieA Member Posts: 711
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    https://community.versusarthritis.org/discussion/comment/719914#Comment_719914

    Hi @Sample

    I've been on my 3 drug combination since July 2021 and I've had all relevant vaccinations since then - covid/flu/shingles. I'd asked my rheumatology clinic nurse about injecting adalimumab around the time of covid vaccines (since there was instruction to delay MTX for two weeks after covid vaccination) and she said there was no published guidelines but if I was stable either delay the adalimumab injection or re-time the covid vaccination to ensure there was time between them. As far as I'm aware the uk flu vaccine is not a live vaccine and I was given the Shingrix shingles vaccination which is also not a live vaccine. My first shingles vaccine fell on the day before my MTX and adalimumab and since I couldn't find any detail of issues I went ahead with my MTX and adalimumab the following day. I felt pretty rough for a few days afterwards. I'm due my 2nd shingles vaccine next week, the day before I'm due to take MTX and adalimumab so I'm going to delay my MTX and adalimumab for a few days after the shingles vaccination.

  • jamieA
    jamieA Member Posts: 711
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    Hi @MaxA17

    My rheumatologist describes the sulfasalazine/MTX/adalimumab drug regime I'm on as 1+1+1>3. The sum effect of the 3 drugs is greater than each drug's individual effect. I think the technical term is synergistic.

  • Sample
    Sample Member Posts: 5
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    https://community.versusarthritis.org/discussion/comment/719931#Comment_719931

    Oh dear that’s fills me with dread! I hope it’s better for me… good luck finding a more suitable medication for you, it is a bit disheartening with each failed medication but I guess we are lucky there are so many DMARDS to try. Stay strong 🤞

  • Emmasknackeredjoints
    Emmasknackeredjoints Member Posts: 120
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    @Sample hi there. I couldn't get on with sulfazalazine or mtx. So I take adalimumab on its own. The side effects are only tiredness for 2 days after the injection so compared to mtx its a breeze.

    However I don't feel adalimumab works as well as mtx.

    For me I've been told this is my last choice so I have to stick with it.


    I understand ur worries the risks with this are awful but I try to think living with horrendous joint pain is worse so don't think of conditions you may or may not develop.


    Good luck

  • Fif
    Fif Member Posts: 113
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    I started on methotrexate when first diagnosed and it did help, but my rheumatologist said it was suboptimal, so added sulfalsalazine. This didn't make much difference, so I was taken off and started on amgevita. This, in combination with methotrexate, has made a difference. The joint swelling has decreased and pain levels are low. I haven't experienced any great side effects, and although I'm quite careful with my diet l still eat a small amount of blue cheese etc. Try and give it a positive go. Hopefully it will work for you. Good luck.

  • MaxA17
    MaxA17 Member Posts: 4
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    @Ellen Thank you! My appointment went as expected yesterday - my Methotrexate has been upped to 8 tablets (20mg) so am hoping it will make a difference. Only time will tell!

    My fatigue may also be due to (very) low levels of Vitamin D. Been put on a high dose for 6 weeks.

    Happy Friday!

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