How much better should my RA medication make me feel?

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HG80
HG80 Member Posts: 10
in Living with arthritis

Hello everyone

I'm after some guidance of what my medication should be doing for me, please.

Diagnosed with RA 6 months ago, it's in my feet. 3 months of steroids and sulfasalazine had no effect whatsoever. I've now had methotrexate added to this, and just reached 3 months on that. Been reducing my steroid dose down to its current 5mg per day.

The methotrexate has certainly reduced the pain, it no longer hurts when I am sitting down. And I don't particularly feel much pain in my right foot any more. But I am still suffering with my left foot, particularly if I have been active for more than 3 hours in a day. I'd say, on an active day, it hurts about 80% as much as it did before I started medication. On a less active day it's about 50% as bad as it originally was.

Is this what I should be expecting from my medication or should it be doing more? I don't know if it's not quite working, or if my expectations are too high?

I have a follow-up with the RA nurse at the end of the month to see how the methotrexate is working and if I should end the steroids. I'd like to know other people's experiences so I have a benchmark to take into that session please.

Thank you!

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  • Grizelda
    Grizelda Member Posts: 8
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    Hello, I’m sorry to hear that you’re still in what sounds like a lot of pain. After living with rheumatoid and psoriatic arthritis for nearly 20 years, my opinion (and obviously I’m not a doctor) is that your drug regime should be providing more relief than this. Sulfasalazine had no effect on me but methotrexate was great, however I subsequently had to have it alongside Enbrel, a biologic drug. My consultant changed my script from MTX tablets to injections, to help my gut and because your body takes up more that way. This worked much better for me.

    It’s also really important to limit inflammation early on in the course of the disease, as this will help prevent it being worse later on. I would recommend that you share the above with your specialist nurse and emphasise that you’re still struggling a lot with it. I’m somewhat surprised they haven’t put you on a biologic drug yet as I thought that nowadays, early treatment with those was deemed a good idea. But this is are only an impression that I’ve gained.

    It also has to be said that consultants vary enormously. My first one was absolutely awful. I wasn’t someone who cried at the drop of a hat but he was so insensitive that by the time I left my first appointment, I was stifling my tears. I am now very fortunate to have had a superb consultant for many years. I dread the thought of him retiring!

    Good luck and I hope that you soon get more relief.

    Best wishes, Grizelda

  • HG80
    HG80 Member Posts: 10
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    @Grizelda thank you so much for your response, and sharing your experience.

    I'll definitely make sure I'm clear with the nurse at the end of the month, and see if there are other options that could help more.

  • stickywicket
    stickywicket Member Posts: 27,710
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    I'm not sure there's an answer to your question. Certainly, you've given everything a fair trial. i think your rheumatology nurse might be able to help a bit. In my all-too-long experience of RA, they go b blood test results much more than pain. The GP can prescribe pain relief. Being a natural optimist I'd say the steroids and sulf didn't work for you and the meth is just starting to kick in though it might be that the steroids actually did more that you realised and coming off them has allowed a bit of bite back. Steroids usually work very well for most of us with inflammatory forms of arthritis.

    I'm not sure there's a 'normal' in terms of pain relief but I hope you continue to improve.

    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • JenHB
    JenHB Member Posts: 131
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    I was started on MTX in March, and they have now added hydroxychloroquine to the mix. With me, it's been mainly my left knee which last month became very swollen so my mobility was severely restricted. I saw the consultant earlier this week and she drained fluid from the knee and put steroids in. This has made a huge difference and I'm hopeful that will keep the knee calm until the hydroxychloroquine starts kicking in. I think just going to the appointment and felt that they are doing something has also helped my mood.

    Hope you manage to get some answers

  • KO1976
    KO1976 Member Posts: 2
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    Hi, I 'm a nebee to Versus Arthritus and have been diagnosed with RA. I am currenty under CRH Rheumatology unit, currenty on Sulfasazine and 2 5mg steroids, still in pain in all my joints even my feet.

    My question is this. If Sulfasalazine is used to supress your immune system because my immune system is over active and killing off my good cells, why when I had my COVID and FLU injections, do these injections BOOST my immune systems seem strange. My RA started getting worse when I started my Flu jabs, and really escalated when the COVID jabs came in

    Thanks

    Keith

  • Chris_R
    Chris_R Moderator Posts: 794
    edited 3. Mar 2023, 22:12
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    Hi @KO1976

    Welcome to the online community,great to see you posting and chatting to others

    I dont know if you have looked at managing your pain in a different way.Here is a link that may help

    https://www.versusarthritis.org/about-arthritis/managing-symptoms/managing-your-pain/

    Hope this link helps in some way please keep in touch and tell us how you get on and continue to chat on our forum it often helps to hear what others say and may have some helpful advice.

    All the best Christine

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

  • Baloo
    Baloo Member Posts: 393
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    I think its such an important question to know what to expect from pain relief. I take paracetamol on the basis there will be less pain and more activity. I woke up the other day in pain, had enough of the pain straight away, took paracetamol and went back to bed. An hour later I got back up, the pain was still there, but there was also a level of comfort enough that this time I could get up and go about my business.

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