Advice on changing meds

Spuggy
Spuggy Member Posts: 6
edited 26. Oct 2024, 17:26 in Living with arthritis

Hi, I'd be really grateful for anyone's thoughts on changing meds. I've got RA as well as some OA and it took me over a year from diagnosis and four different meds before I saw any improvement in my condition. MTX and sulfa had side effects, adalimumab did nothing at all, but Rinvoq is now giving me some benefit. I've been on it since the start of the year, and it's helped in some ways, but I've still got persistent inflammation in my ankles (which a steroid injection helped for about maybe a week) and my feet are often sore, walking often painful, and I am leading a much more restricted life than I had hoped. Rinvoq also seems recently to be giving me high blood pressure, which I've never had before. Should I be looking at changing my meds? I'm scared at the thought of going through months where I'm back to how I was before the Rinvoq, when even sitting down was painful and my upper body also hurt (it doesn't at all now, and the Rinvoq has definitely given me more flexibility in joints in lower body too). Is there even a medication out there that will (eventually) give me my old life pre-diagnosis back?

Comments

  • Hi @Spuggy

    It is so difficult to make a choice when a medication gives partial relief.

    Three things to consider:

    1- you might have to go through a few to find one that works & each medication has to be given a good go of at least 6months. Let’s say 3 months for the initial initiating delays (nurse coming over to teach you how to self inject etc) - it’ll be 9-12 months per new med.

    2- as per NHS rules, you won’t be able to go back on Rinvoq as it will be put down as being ineffective and Rheumatologist can’t prescribe it again

    3- And most importantly your Quality of life. I’m on my 4th Biologics because my QoL has been very poor even on Orencia which was partially effective. My blood results also showed high levels of ongoing inflammation despite increasing MTX dose and taking low dose steroids daily.

    I have high hopes that Rituximab is working 🤞🏽as for the first time in years the swelling/pain is improving

    But these past few years were terrible

    I’m sorry there isn’t an easy answer but hopefully you are able to judge what is best for you.

  • Spuggy
    Spuggy Member Posts: 6

    Thank you so much, Tired Warrior. I hadn't realised that there was no chance to go back on Rinvoq if it turns out to be the best option for me (even if it's nothing like as good as I'd hoped). I hadn't known that it was possible to take steroids longer term either although I guess that there are drawbacks there as well, and I do understand that there are no easy answers or easy fixes. I'm sorry you've had such a rotten time - I really hope Rituximab is the right one for you.

  • Along with medications, it might be worth requesting a referral to physio/OT

    There might be aids/splints that you could use to help yourself

    Also I have found hydrotherapy to be very useful. I’m a wheelchair user as even walking indoors has been very painful these 4 years but in a hydrotherapy pool I can do loads of exercises and for that 1 hour feel free as a bird. The water is between 30-33°C so soothing for the joints unlike ordinary pools (24-28°C)

    There might be other therapies you could consider too like acupuncture or hot wax etc (Rheumatology Physiotherapist would know better)

  • Spuggy
    Spuggy Member Posts: 6

    Thanks for another really helpful suggestion, @TiredWarrior. I spoke with my rheumy about physio at the last appointment I had, and they said that since the Versus Arthritis exercises I was doing were definitely helping, an actual physio couldn't offer anything better. But I've got an appointment next month and will ask about the things you say - thank you!