Biologics and flare ups: what do they mean?

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Hello,

I have quite a specific question related to biologics and wondered if anyone might have experience / knowledge. I finally started the biologic Amgevita 6 weeks ago, after getting diagnosed with RA in October 2022. No other treatments had worked for me at all. With the biologic I felt an improvement after 2 weeks. Plus, the swelling in my wrists was visibly, significantly reduced. This period of feeling better lasted 10 (ish) days. Then, I had a terrible flare up and was in bed and barely able to move for a week. The small improvements I had experienced disappeared and the swelling has returned. My blood tests show an increase in CRP etc, after a significant reduction.

Basically, I wondered whether this indicates that this biologic may not work well for me, or whether this is a normal part of the process? I'm feeling depressed about the possibility of waiting further weeks and months without feeling any better... and having to plan/navigate life and work with my current levels or pain, fatigue and immobility. The treatment journey feels totally endless at present.

many thanks to anyone that can share their experiences!

Comments

  • jamieA
    jamieA Member Posts: 724
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    Hi @nellooo

    I've been on Amgevita since July 2021. In my case I felt an improvement after 3 weeks and it continued. However I still get flares but they are nowhere near as severe as my condition was in early 2021. I was a bit taken aback a couple of months after starting Amgevita when the senior rheumatology nurse said to me that it was good that the first biologic worked as they had 7 to choose from. I've recently completed the Nuffield Health Joint Pain programme and another person on it had PsA like me but was now onto his 4th biologic so it seems that for some people it is trial and error.

    Sorry I appreciate that's not what you want to hear.

    Just a thought - I think there are two different injector pen sizes - 20mg and 40mg. Are you on the higher one? I am.

  • CarylW
    CarylW Member Posts: 274
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    Hello @jamieA

    I hope that you get more replies from people with experience of biologics, but in the meantime, this information from our website may be helpful.

    It must be so disappointing to get a flare up after things had been so much better for you. Let us know how you get on.

    Best wishes

    Caryl

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

  • nellooo
    nellooo Member Posts: 16
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    thanks @jamieA it's really helpful to hear your experience. The whole treatment process still seems so mysterious and opaque to me 😓

    Do you still get flare ups often? Do you have any sense of what triggers them?

    I am on the higher dose. I definitely had a positive response to Amgevita in the beginning, so I'm hoping it will return and I won't need to try others...

  • jamieA
    jamieA Member Posts: 724
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    Hi @nellooo

    I'd fully agree about the process being like a black art. I know everyone is different - but there still seems to be no set pattern to the way things are done. I'm still on 3gms sulfasalazine daily, 10mgs MTX weekly with the other 6 days of folic acid and 40mg Amgevita bi-weekly. In February I'd asked the rheumatologist to reduce my sulfasalazine as it was the first drug I was put on in 2020 and it didn't work then. I'd met two other people on biologics who only took biologics - no DMARDs. I really wanted to reduce my drug intake if possible. She agreed to reduce it to 2gms and I subsequently took my worst flare since the Amgevita had kicked in fully in September 2021. The rheumatologist had explained the 3 drugs working in combination provided more treatment than each individually - what she called 1+1+1 is greater than 3. I've had a couple of other flares when I've missed my medication due to being ill or after covid boosters but they've been nothing like how I was in early 2021. I was in hospital 4 times in 2020/21 with the effects of PsA - that included 3 times when I also had pneumonia. I haven't been in hospital since with the effects of PsA so I know the biologic is working. I still get joint issues and OA has developed in my hands, knees and feet but I'm able to walk my dog 50-60kms a week.

    If I'd suggest one thing to you is not to be reticent with the medics if things are not working for you. I felt both my GP and first rheumatologist were less than helpful and I ended up having to be more forceful with them. I eventually asked to be transferred to another rheumatologist.

  • nellooo
    nellooo Member Posts: 16
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    @jamieA thank you for sharing that. It's helpful to hear about the details of your treatment journey, even though it sounds like it's been complicated and not-easy. The hospital admissions sound like an absolute nightmare. I'm glad that your mysterious cocktail of drugs is working for now, and keeping you well. I am slowly and unhappily realising the ongoingness of these treatments and arthritis symptoms. I'm also still taking hydroxychloroquine and MTX even though neither seemed to do anything before, and I find the MTX makes me feel even more horrible and tired than I normally do. I definitely miss feeling like a healthy person - and taking loads of different drugs without any clear sense of their efficacy compounds this.

    I actually had a synovial fluid biopsy for research purposes, and the clinicians said that it *might* help to determine which treatment would work best for my RA (but in the future, as it takes a long time to be analysed and for the results to make their way back). For now, as you say, the treatment seems quite haphazard -- mine was made 1000% worse by insane NHS waiting times.

    I will try to be forceful with my clinicians and healthcare team - thank you so much for the advice and sharing your experiences!!

  • Lambourne
    Lambourne Member Posts: 21
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    I have RA in my hands mainly but it can flare in shoulders, it came on very suddenly and frighteningly, I was put on Methotrexate but the relief was marginal. I have been on adalimumab (Idacio) for about 6 months and it has been amazing, I still have an occasional flare but they only last a day or do and are nowhere near as severe as previously. I guess I am lucky in having found a biological that works at the first attempt. Keep at it, you might need to try something else.

  • nellooo
    nellooo Member Posts: 16
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    @Lambourne thank you! thats great to hear. How long did it take to get relief from your symptoms after starting injections?

  • Lambourne
    Lambourne Member Posts: 21
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    Sorry for the delay - I had relief from my symptoms within a couple of weeks of starting the injections, hope you do too.

  • Kagoza
    Kagoza Member Posts: 2
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    I have osteoarthritis , worst in my hands, it is very depressing having to ask for help to do anything that demands a grip. Even driving causes great pain in my fingers, I am very limited in pain relief, morphine and derivatives don’t work, just make me ill. Because I have CAD, nsaids are also not allowed. I get a lot of burning type pain in the skin, different to the joint pain, the area actually feels hot, I think there is nothing to be done.

  • Chris_R
    Chris_R Moderator Posts: 800
    edited 2. Jun 2023, 17:20
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    Hi @Kagoza

    Welcome to the online community,thankyou for telling us your arthritis journey,its good you are posting.

    You write that you have Osteoarthritis worst in your hands. and you are in great pain in your fingers medication doesnt touch the pain,you also have a burning type pain in the skin and the area feels hot.

    Here are a few links that may help

    Hope these help in some way.Please keep in touch and tell us how you get on and do go to the forums and chat to others.

    All the best Christine

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

  • nellooo
    nellooo Member Posts: 16
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    @Kagoza I'm sorry to hear this - it sounds really tough. I can understand how miserable-making and exhausting the constant pain is. Sending solidarity! I hope that you can find some relief somehow... I've started doing these free counselling sessions where I moan about stuff to a stranger for an hour twice a week. They don't help the symptoms but they help me a bit with the mental stress of my condition. Do you think that could be useful for you?

    sending all my warmest,