Rheumatoid arthritis hasn't responded to steroids, what now?

[itseasybeingcheesy]

I've just had my first appointment with consultant on Monday. He said that he wanted to start me off with a steroid injection that would give me at least two weeks of no symptoms, possibly more, and see me again in 6 weeks.

Steroid injection hasn't made any difference at all and I don't really know what to do. I'm going to go back to GP I think and ask for some stronger pain relief to take at home as ibuprofen isn't touching it however I don't know whether to contact consultant and ask to be seen sooner than six weeks or not. I don't think I can bear 6 more weeks like this. My hands are so stiff and sore it's a real concern that I'm not going to manage my baby's car seat buckles much longer.

Any experience or advice to share please?

You poor thing.

Ask for an earlier appointment (good luck with that one).

You could discuss alternative treatments with the consultant. Maybe biologics would help.

You should contact the consultant ASAP. I had the steroid injection and it did nothing for me.

Thanks both, I'm trying to get in to see the GP tomorrow and my hope is that I can get him to write another letter to consultant and then follow that up with a phone call. I've already waited 6 weeks for my first referral so this feels like a real let down, I was really hoping for some relief.

@Jojoanna what did you look at following steroids not having an effect?

@ParsleyPot what's biologics? I'm a total novice with all this.

My yd has the same issue. Steroids have helped in the past, but now they no longer do anything. She has JIA (since aged 9 and now it's called RA as she is an adult).
Can you get referred to your hospitals rheumatology dept as they will have more knowledge of what drugs to try. There are lots and you may need to start with something called Methotrexate.
I hope you get some relief as arthritis is awful.

Biologics are new-ish treatments for autoimmune conditions such as rheumatoid arthritis.

They're expensive and come with risks of side effects, so they're not routinely offered as first choice of treatment.

They're also more effort to take as they usually involve an injection or infusion (drip into the arm).

But they're often game-changers and bring about remarkable recovery.

NICE guidelines (NHS guidelines) give strict rules about who is eligible. Often people need to try cheaper, easier (and with fewer possible side effects) methods such as steroids for a while first.

Hope you feel better soon.

I was given oral steroids by my GP until the consultant sorted out my medication . Don’t suffer in pain !

Thanks I'm definitely going to go back to consultant. He was a bit dismissive of me too. I had a sprained wrist at the time and he asked me if the support bandage I was wearing was "just for effect". But then I didn't really know what to expect of the appointment either.

I was put on Sulfalazine and given steroid tablets whilst the sulf got into my system.

I think the guidelines are that you can't go onto biologics until they've tried other drugs like sulfalazine and methotrexate on you.
I can't go on methotrexate for various reasons but my sister had great results on the combination of the two above. I've just been put into one of the biologics as the sulf doesn't seem to be working anymore. Still early days though.

Good luck and keep demanding some action, there are loads of options to try so you shouldn't have to live in pain all the time.

Have they not started you on medication too? In my experience steroids are given to tide you over until meds kick in. As above I've had success with salfasalazine and methotrexate

@grandmasterstitch the doc wouldn't give any other medication as he said that methotrexate wouldn't be suitable as in breastfeeding (which if pain carries on like this I'll end to start medication) and also because of my age and having just had a baby he said it could be that I'm having one large flare that will subside and symptoms might fade completely. I'm not sure how much of that I believe but I did think the steroids would have worked so was happy to not have to give up breastfeeding at the time. Baby is 7 months so would consider weaning after speaking to the BFN to see if methotrexate is a definite no no.

Oh you're breastfeeding! That's such a tough one. I had to stop feeding my son at 4 months so I could go back on meds as I was really struggling. It was hard and I felt dreadful but I'd known I wouldn't be able to continue so I was prepared. I found steroids useless too, at most I would get relief for a week and they won't do another one for at least 6. I hope you get some relief soon, have you got anything like naproxen?
It can be very easily managed once you get on the right meds so you won't be in pain forever. Do PM me if you need to chat, my son is 2 so I've been through it recently

If you are still BF it does limit your choices somewhat on meds, generally steroids is it.
I find I got more relief from oral steroids than injections. Pain relief will also be limited by the BF

You may need to just consider stopping, it will make no difference to your LO but they will notice if you get so ill you can't look after them. RA treatment is a long game unfortunately relief is rarely instant.
DMARDs like MTX slow down disease progression but don't necessarily provide pain relief except that they calm down the disease. You will probably need to take pain relief too.
Biologics are only offered if you've failed on several DMARDS first.
As you are BF look at supplementing pain relief with heat / cold packs (usually personal preference as to what works best), warm baths and maybe try a TENs machine, they no longer work for me as you get used to them over time but it might work for you know.
If the consultant was dismissive perhaps speak to you GP about your concerns they can advocate for you.
I got rid of a crappy consultant with the support of my GP (funnily enough because his attitude was shitty when I had my first baby and that was the last straw)
I've had RA for over 20yrs and had two babies whilst being treated for it so I understand how hard it is. However I would say talk to your GP, talk to your health visitor (they may be able to help if you are struggling with baby - I had a fab one with DS1, shit one with DS2 so know this doesn't always work but it's worth a go)
Get yourself onto a RA support board - arthritis care has a good one and there are some on FB too

Flares have peaks and troughs and when its on its way to a peak (at their worst) they tend not to work as well as when they are on their way back down the trough (subsiding).

Tens machines can work well, my yd uses hers. She also uses Tiger balm, the orange one as the white non staining one doesn't work as well.

This is great advice thank you all. I've made another GP appointment to try to get some naproxen short term and have left a voicemail for the rheumatology department to call me back so hopefully they'll be willing to see me again sooner than 6 weeks.

Although BF is a valid reason for delaying DMARD treatment like mtx - age and having a baby 7mths ago aren't
I was diagnosed and started DMARD treatment at 19
Having a baby is often a trigger for RA, they think it might have some connection to hormones (for some people with RA pregnancy can switch RA off too) however it's usual to treat as soon as you can to slow progression ASAP as once you have it, it doesn't just go away.
Post birth flares which are common in all RA sufferers who have babies are typical at 6wks after birth but to still be in one at 7mths would suggest it isn't a post birth flare just a flare.

@wonkylegs that's really interesting. The consultant seemed to be saying to me that he almost thought it would go away if we just used steroids for a while and that it was hormonal. I had the feeling at the time of being slightly fobbed off but this being unknown territory to me I didn't say anything. I'm pretty concerned about lasting joint damage as it is. Should I be pushing them to start me on something to treat it rather than just manage symptoms? I've been experiencing this for about 6 months now.

Although I'll be very sad to stop BF if it comes to it I'll stop in order to start a treatment that works.

@itseasybeingcheesy I can't believe he would say that. RA is a chronic incurable disease. It doesn't go away. It can be managed but it certainly doesn't go away. And long term steroid use should be avoided anyway. Push for a second opinion

@grandmasterstitch I will thank you, I'll chat to GP about what he said today as well. He was pretty breezy and blasé about it all and it was a really quick appointment.

My dad has RA and has been following a strict anti inflammatory diet and it does seem to help. He’s also on methotrexate so it’s hard to know what’s doing what but he says he can feel a difference in his joints and notices more swelling when he eats something off the diet.

It’s really restrictive though - he can’t have any grains or pulses, any nightshade veg (potatoes, tomatoes, peppers, aubergine), any nuts and seeds, any dairy. Some other things are banned too like egg whites. Rice was banned at the start but he tried and seems to be ok with it. You get the picture!! Certainly going to be difficult to follow with BF. But once you are off BF it may be worth a try.

Tbf my friend was diagnosed with RA after being bitten by a horse fly , she was given steroids and when it calmed down after a good while they reduced the intake she has only ever had one flare since which was managed by steroids. She attends yearly check ups.

Oral steroids

That's really interesting @Jojoanna it would be great if that was the case for me. It been over 6 months like this so I'm not so sure though. Honestly though a big part of that is me putting off seeing the GP in the first place for the first four months. Since then it's been waiting lists etc.