Confused and struggling: Hello, I haven't posted on... - NRAS

NRAS

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Confused and struggling

Jaynes profile image
Jaynes

Hello, I haven't posted on this site for few years as R.A has been going ok. I take hydroxy every day and naproxen when required. About 4 months ago my hands flared along with terrible pain in my wrists, feet and knee. I went to my GP and he sent me for an xray on my knee which showed arthritis, he said I had to just live with it. I finally rang nras advice line last week as hands, wrists and knee are still painful and I am struggling to walk and cant cope with it anymore. I have been given a phone appointment for next week with rheumy. My consultant retired a few years ago and I haven't seen anyone since. I am just wondering on whether the hydroxy has stopped working for me due to having pain for so long now and whether I should try different pain relief. Apologies for the long post but looking for advice on maybe what to expect from the phone appointment. Take care everyone.

13 Replies

That’s rubbish treatment. Just because your rheumatologist retired doesn’t mean you are magically cured does it?! 🙂

Have you had any blood tests done recently? If so, how were your inflammation levels?

If you haven’t had any, you could ask your GP to get some done before you speak to the rheumy - that way you’ll be able to paint a more accurate picture of what’s happening (and avoid waiting for another rheumy appointment to discuss the results).

As for the phone appointment, you’ll need to outline your history quickly and then explain what’s happened recently. It’s also best to go in with a plan of what you’d like the outcome of the appointment to be.

- Do you want to discuss other DMARD and pain relief possibilities?

- Do you want a short course of steroids to help you through this bad patch?

- Do you want some MRIs to see the level of inflammation in your bad joints?

- Do you want some physiotherapy (for when the flare passes) ?

Personally, I’d want all of the above in your situation. And I wouldn’t be shy asking for it 🙂 Best of luck x

Jaynes profile image
Jaynes in reply to LoneEra

Hello. My doctor done a blood test in December to check for gout in my knee, that was negative but he said my crp was raised. When I made my rheumy phone appointment they asked me contact my doctor for bloods to be done. The results are being sent to rheumy clinic so I dont know what the results are until my appointment. Thank you for all other suggestions, they will certainly help me.

Cal48 profile image
Cal48 in reply to Jaynes

You should have copy of your blood results and get to know your CRP and ESR numbers so you can see how high these inflammatory markers are. You may need different meds.

Jaynes profile image
Jaynes in reply to Cal48

Hello, GP said crp was raised but didn't say what it actually was, I will certainly ask in future and keep a record of it. Have had blood done ready for my phone appointment so will ask then. Thank you.x

Hi Jayne, Definitely time for a rheumy review/chat and I feel they will suggest a blood test to see how the Hydroxy is doing re controlling inflammation levels. If the rheumy did suggest another med then that’s a better option than getting damage to your joints if your current med isn’t working enough and you keep taking it, but wait until you’ve seen the rheumy and discussed. Rheumy will get you back on track. Main thing is you’ve done the right thing to make an appointment by phone to start with. We can’t advise which painkillers to anyone on here as it isn’t allowed for us to do so. I’m sorry your GP sounded rather dismissive .. just live with it. 😢 I’ve had numerous GPs and one or two rather odd in 26 years of RA and not one has ever said that, so sorry to hear this. They should be organising pain relief for you in the interim. Good luck with your phone call and hope it’s soon. 💗 Micro heat pads always relieve my joints and hydrotherapy but that’s stopped due to the pandemic but hope it opens soon for people once safer. x

Hi jaynes. I would be expecting at referral ASAP with a new consultant. It sounds as if you need a full review of your RA and medication. Don’t leave it hun this RA is a real b...th 😩. The sooner your seen the sooner they can sort you meds out. GG

Good grief, you should not have been left 2 years without a consultation. RA does not go away, it is a chronic condition you have for life and it needs treatment. Rant over.

I would strongly suggest your current treatment is not working and when you have your phone consult you should ask about a different treatment plan. This should not be a problem.

Good luck and I hope you soon have relief from the pain.

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Morning. Sounds like you need an up-to-date MOT. Make a list of everything before your phonecall with the rheumatologist. Your meds obviously need changing. My RA Outpatients has been shut since last April because of Covid. Your GP unfortunately has limited knowledge, but should still be giving you a yearly meds review.... Good luck at your consult x

When a GP that I had not seen before told me that my joint pains (in a flare) were 'to be expected' at my age, I exploded at him and asked him to look at my records. He spent a bit of time reading them and then said 'Shall we start again?'

So I forgave him, but did feel that someone less assertive might have gone away without any help...

It is difficult because we often know a lot more about our condition thatn th GP.We may not be medically trained but daily life with our symptoms, side effects and trial and error with treatments/therapies does give massive insight.

I aim for assertive pleasantness, usually do my reliable research, (eg. NHS site ) then present more solution options.

The clue is in "General Practitioner" therfore not specialist. 🙄

Sometimes I can't help reply to things like " just got to live with it " do you have this? Do you have a loved one living with it? No ah so theorectical observations on your part then.

Fortunately I manage to get away with such responses using humour.😜

All the best.

😊

I would like to say all the advice you have been given is excellent. You should be able to get your blood results , actual numbers, from either the secretary or the receptionist. Keep a note of your results. I don’t know if your drs have access to patient access which is a website with all your information about you from your gp visits blood tests medication etc which is linked to your go surgery where you can look at the trend of your results. As suggested write down what your problems are so that when you have your consultation you don’t forget anything. Be prepared

Hello, just wanted to give an update on my post. Had my phone appointment and rheumy nurse who was very understanding and helpful said my inflammation markers were very high, 43. Hydroxy is no longer working for me so going onto sulfasalazine and steroids to hopefully help in the short term. Feel a bit apprehensive with the sulfasalazine but hopefully it will work and help with this constant pain. Thank you all for your helpful comments. X

J1707 profile image
J1707 in reply to Jaynes

Good you had a positive outcome 🤞🏻this works for you x

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