Back on steroids.

Woofy
Woofy Member Posts: 360
in Living with arthritis

Been having a bad time recently. Hospital think a flair, so back on the old happy pills again for three weeks. I hate taking them, but second day in and they are already working.

wish they could find some Arthritis drugs that worked as well.🥹

Hope everyone is as well as can be.

Comments

  • frogmorton
    frogmorton Member Posts: 30,026

    Shame isn't it that they are so very bad for us long term @Woofy but I'm so glad you are being given a reprieve and send you some ((()))

    I am ok thanks for asking

    Take care

    Toni x

  • Emmasknackeredjoints
    Emmasknackeredjoints Member Posts: 146

    @Woofy sorry ur in this mess, I find the 20mg preds for 4 5 days works well but the steriod injections work within 2 days.

    Why do they give you tablets and not the injection to save the stomach upset.

    Sorry if stupid question I'm still new to the hell hole we all live in

  • Woofy
    Woofy Member Posts: 360

    Hi Emma.

    to be honest I didn’t need much persuading to go on them again. I had some boxes still in date, so the. Rheumatology nurse said take them. I do tolerate them quite well. As I do Methotrexate. I’ve only just had my Mex increased in the last two weeks, and the nurse did say if I didn’t get on I could have injections. Two days on steroids and I am feeling less sore, and my mood has lifted. I hate taking tablets, but as I am in a flair up, I’d have eaten elephant poo if it meant I’d be pain free and get some sleep lol.

  • frogmorton
    frogmorton Member Posts: 30,026

    No idea Emma perhaps it is better and spreads the effect out? Maybe it's cheaper/ easier for them to prescribe? Not sure but I know it's not something you want to be taking long term even if it is a 'wonder drug' at the time.

    perfect for flares.

    Love it Woofy: 'I'd have eaten elephant poo if it meant I'd be pain free...'

    Brilliant i think we all agree with that!

    Toni x

  • Emmasknackeredjoints
    Emmasknackeredjoints Member Posts: 146

    Apologies if thatcame across wrong way. No offence meant.

    I'd eat elephant poo 😂🤣

    I know that feeling very well, although maybe some salt and pepper first to take the edge off.

    For people who do not have IA they would never understand that level of pain , something that makes this site so helpful for us all.

  • jamieA
    jamieA Member Posts: 837
    edited 2. Apr 2024, 08:48
    https://community.versusarthritis.org/discussion/comment/720296#Comment_720296

    Hi @Emmasknackeredjoints

    I think the answer is cost. I think most if not all tablet DMARDs are out of patent so what we get are generic drugs costing pennies to supply. I think MTX costs the NHS about 6 pence a 2.5mg tablet and Sulfasalazine about 10 pence per 500mg tablet. I think the MTX pens are about £17 each to the NHS. Hence the hoops we have to jump through to get adalimumab at £3550 per patient per annum.

    Remember these drugs were not initially designed to treat inflammatory arthritis - it was just something they found by chance. MTX was initially developed for use in chemotherapy. I remember reading somewhere that Hydroxycholoquine had initially been supplied to soldiers as an anti malarial drug. Funnily enough I had to take my labrador to the vet last week as he's had an upset stomach. The vet said that if the latest probiotic didn't work he'd next prescribe Sulfasalazine - when I queried that and told him I take it for PsA he said it's the very same drug.

  • Emmasknackeredjoints
    Emmasknackeredjoints Member Posts: 146

    Hi @jamieA wow the tablets are so cheap I didn't realise how cheap. I'm aware of the 3.5k for adalimumab, the nurse made it very clear to me how much I was costing the NHS and that its a lot of money the NHS is spending on me so I need to be grateful. ( disgusting attitude really as other patients with different conditions cost more and do not have a nurse belittling them as to what they cost the NHS)

    How's your flare up? Feeling any better

  • Mindful
    Mindful Member Posts: 8

    Hi @Woofy ,

    I have only recently been diagnosed with psoriatic Arthritis. initially, they put me on 20mg (4 tablets) to wean off one tablet every 2 weeks. Within a week I had become pain free, regressed and hit rock bottom again. This time I'm on 30mg (6 tablets to wean off 1 tablet every 2 weeks) and I can feel the regression exactly 5 days in. I'm terrified of being immobile again. The other thing they did this time was start me on Methotrexate but this can take 3 months ro kick in.... what are your views on biologic injections and can we get these on the NHS? I've had to go private so far as the wait for rheumatology referrals has taken 7months so far!

  • Woofy
    Woofy Member Posts: 360

    hi mindful.

    Thank you for your post. I am now down to 5mg daily this week of steroids, so they will be finished on Sunday.

    I am already on a fairly high dose of methotrexate, so I think the next stage is the biological stuff.

    My rheumatology nurse told me you have to go through a process with the meds. You must have tried at least two other Demards. I’ve tried Hydroxychloraquine and sulphasalazine, both of which weren’t good for me. Then the next step is biologicals along side methotrexate. Whether that be tablet form or injections I don’t know.

    The trouble is every time I come off of steroids the pain creeps back. I am lucky, we have an excellent rheumatology department here in the south west. We have to cling on to the hope that we will both find something that will work for us. I hope the Methotrexate helps you. It has helped me a little, but I’ve only been on this higher dose about a month. You are right they do take a long time to kick in. Keep me posted on your progress.

    Jayne

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