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Biologics

Hi all.

I hope your all safe and well and enjoying this beautiful sun.

I'm Amy, I'm newly joined and really just looking to hear about other peoples experiences of RA.

Due to an extreme escalation in my condition I am starting biologic medications this week and am nervous. Can anyone in the community share thier experiences, good and bad about these medications please?

Thanks x

Comments

  • BettyMacBettyMac Posts: 157

    Hi Amy

    Welcome to the forums!

    Biologics do feel like a big step but I have to say they’ve given me back my life.

    Yes, there are downsides and risks but I’d rather deal with those than the destructive inflammation that made me so depressed, lost me a profession I loved and made my life a misery.

    There are lots of us on here who are on biologics and I’m sure they’ll be along to tell you about their own experiences

    Good Luck!


    ps - the mods may decide to move this conversation to Living with Arthritis

  • Amy79Amy79 Posts: 19
    Hiya. Thank you so much for your reply.

    Can I ask what you've experienced as the downsides of the meds?

    Do you have reduced pain and better mobility?

    Hope you dont mind me asking :@)
  • BettyMacBettyMac Posts: 157

    Hi Amy

    Before going on Benepali, I had disrupted sleep due to pain, was having to take paracetamol and ibuprofen a couple of times a day and was constantly suffering rebound pain if I tried to do anything physical. I was also pretty depressed with it all.

    So, yes - for me almost no pain, though still a few wee niggles in my hands. My feet are totally better and I can walk distances again. I no longer get the tendon and muscle pain that accompanied the actual joint pain. Apart from one PIP on my left hand, I have good mobility of all other joints. My shoulders are good as new!

    The downsides are increased susceptibility to infection - and delayed healing. If you google the name of the drug, you should be able to find the insertion leaflet which lists all the risks.

    I have to get my husband to do the weekly injection for me. I can manage the methotrexate one ok - but the Benepali has a different mechanism and I developed a wee bit of a phobia about it. Just me being daft!

    Travelling with these pre-filled syringes is a wee bit of a faff. They shouldn’t go through the scanner at the airport so you have to carry a letter from the hospital - and you have to keep them at a certain temperature.

    I have to avoid the grandchildren when they’ve had live vaccines or have stinking colds. I didn’t pay enough attention to this last year and ended up with the worst flare of asthma for thirty years plus a chest infection! One of the other people on here - either Stickywicket or Dreamdaisy - had some great tips which I followed. I was carrying hand gel long before it became “fashionable”!

    I always have the annual flu vaccine and now I make sure my pneumococcal one is up to date too.

    I’ve also noticed that things take much longer to heal. A wee insect bite is inflamed for a few months and leaves a scar.

    We all have to make your own decisions on this. For me, taking everything into consideration, I have far better quality of life now than I did a few years ago.

  • Amy79Amy79 Posts: 19
    Thank you.. honestly your message is so helpful. I will also be on benepali weekly and have the nurse coming tomorrow to start it off.
    I really appreciate your message as it helps me to feel connected to people who know.

    I also wake every night in agony and am rattling from the many mg's of paracetamol and Naproxen I take daily from 3am onwards.

    So hearing about other peoples experiences is so helpful.
    Thank you :@)
  • BettyMacBettyMac Posts: 157

    You’re very welcome, Amy 🙂


    Here’s a link from this website for more info

    https://www.versusarthritis.org/about-arthritis/treatments/drugs/disease-modifying-anti-rheumatic-drugs-dmards/

    Hope tomorrow’s visit goes well. The nurses are super!

    Betty

  • Amy79Amy79 Posts: 19
    Thank you Betty ;@)
  • BettyMacBettyMac Posts: 157

    Just wondering . . . How did the nurse visit go? Are you getting on ok?

  • Amy79Amy79 Posts: 19
    Hi Bettymac.. I've only just seem your message.. been working so much. I'm a Child Protection Lead for education, so very busy.

    It's actually the most amazing thing I've ever experienced. 2 hours after my first injection I started to have a notable positive change in my pain. In 24 hours I had a 60% reduction in pain and swelling and now at week 3 have a 80%-90% reduction in pain, I have so much more mobility and no longer wake at night crying.. it's so incredible, I keep crying with amazement and joy. Cant quite believe it!!

    How are you? Was this your experience of starting biological meds?

    Amy x
  • BettyMacBettyMac Posts: 157

    Hi Amy

    I’m so pleased that the meds are working really well for you!

    I had a broadly similar experience. As I said, it felt like I had my life back again.

    There’s a small risk I may end up paying for it in the future, viz a vis side effects, but I have enormously improved quality of life now and can make the absolute most of the time I have with grandchildren, husband and hobbies, covid permitting!

    I just wish the treatment had been available to me ten years ago. I wouldn’t have lost my profession or had to stop maintaining my previously high level of fitness at the gym. Amongst other things, the garden went to rack and ruin but, since biologics, I can now deal with that again and am enjoying my old plant passion. I’ll never get back my old fitness but at least the disease is now controlled to a point where I rarely need analgesia and can do most of the things I want/need to.

    For me RA seems to be a vicious circle, fed by pain, stress and depression on top of the effects of the auto-immune destruction and inflammation. Removing any of these factors helps, the major one being the auto-immune element.

    The beneficial effects of a good night’s sleep are life enhancing! A decent sleep and reduction of pain makes everything else so much easier to deal with.

    Several family members also work in education so I can appreciate how difficult your working life might be, especially with the added responsibilities of your post. It’s hard to imagine how all this is going to pan out if and when we ever get this damn virus under control.

    For those of us on biologics, pandemic or not, we need to be eternally vigilant about infection risks. I took a leaf out of another member’s book, way back, and have always carried and used handgels, and distanced myself from anyone with infections. It’s a new way of life but one gets used to it because everything else is so much better. In a nutshell, carry forward the pandemic precautions like using hand gel, increased hand washing, wiping the handles of shopping trolleys etc. And get to recognise impending infection in yourself, seeking early advice from your GP. My practice is brilliant; the few times I’ve had an issue, as soon as I say “immunocompromised” they fit me in to be seen pdq.

    I don’t know if you’ve investigated the Living with Arthritis part of the forum? There are lots of us over there who are well practised at dealing with biologics and would be happy to give you their slant on things.

    Stay safe - and stay well 🙂

  • Amy79Amy79 Posts: 19
    Thank you BettyMac.

    I really appreciate your reply.

    I will def explore that forum.

    I keep meaning to also check out Val's cafe, there are so many lovely people on this site with a wealth of tips and advice and stories. It makes all this so much easier.

    Stay safe and well xx
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