I’m new to this forum

[Isla-baby]

hi folks, new to this forum.

basically was referred to consultant some 6 years ago and started on NSAID naproxen which I had been taking for a while prior and which seemed to be holding pain control quite well. Declined to start DMARDs at that point as a bit scared of side effects and have managed with NSAIDs until last year. Was admitted to hospital last June and was taken off naproxen and put on etoricoxib because of evidence of past stroke on scan. Last year was a roller coaster. Now have been diagnosed with AF and on apixaban and bisoprolol and am only allowed paracetamol or co-codamol which isn’t managing the pain. Have discovered my rheumatoid diagnosis is on my records as suspected even though at time of referral to consultant bloods were positive for the rheumatoid factor. I’m frustrated because I can’t seem to get clarity and my recent bloods are reported as normal. I’m struggling to manage the pain. I try to keep my hands moving but the poor grip and pain is annoying. Any advice or tips going forward?

[KittyJ]

welcome to the group Isla-baby, I hope you find it useful until you have a definite diagnosis RA or not. You can have a positive RF and be healthy, usually other tests are done as well if it’s suspected you have RA, did they do any other tests/scans? Do you have swelling of your joints, you just mention pain in your hands, is it anywhere else too? NRAS do some good publications that you might find helpful and give you some ideas of what to ask when you next see your consultant. Hopefully you’ll get done definite answers soon so do come back here to ask any questions you may have. We can’t give medical advice but can help with our experiences that may help you.

nras.org.uk/publications/

[Isla-baby in reply to KittyJ]

Thanks for all your advice and support.

My thumb joints are both swollen and feel as if they are on fire at times as are my knuckles although they aren’t swollen at the minute. I’m going to try and get back to see my GP and see if he’ll refer me back to the rheumatologist again.

[Mmrr]

Welcome to the forum.You don't mention which medics are looking after your health issues at the moment.

It does sound as if you need a rheumatologist to assess your situation. It might be worth asking for?

Do let us know how you get on?

[helixhelix]

it aounds as if you need to get referred to a rheumatologist to get further forward.

You say recent bloods were reported as normal - but what blood tests did they do? If you are on anti-inflammatories this can mask inflammations, and routing tests don’t normally check antibodies. Get a copy of yoir results to see precisely what they say.

It is possible that you have inflammatory arthritis, but osteoarthritis can be very painful too! However you need a specialist to check and diagnose properly.

[stbernhard]

Hi Isla, I can't help you directly, but it might help you if you contact the NRAS help line on 0800 298 7650 if you can't find an answer in their publications library. Good luck.

[Isla-baby in reply to stbernhard]

thanks for this - will follow up.

[Isla-baby]

I know they did the inflammatory markers test again - is it CRP, and The rheumatoid factors which were raised before but apparently they are within normal range again. I think if I could get the pain in my hands and feet under control again I would be more content. I think I might just have to keep pestering the GP which I hate doing.

[GordonEdin in reply to Isla-baby]

Just to add a few thoughts (as someone who was diagnosed with RA and put on DMARDS some 14 years ago).

If you were offered DMARDs six years ago then it seems likely that the consultant did think you had RA or a similar auto-immune disease.

If it is RA then blood tests aren't definitive either way. The consultants tend to go on the overall picture. RA tends to cause symptoms that come and go with "flares" where lots of joints swell up (painfully), you find yourself stiffening up all over (especially after being in bed or after sitting for long periods) and you quite likely have flu-like symptoms and tiredness as well.

They will also X-ray hands and feet to check for characteristic swelling and erosion of joints (and progression of disease).

I found it very useful to keep a diary of symptoms and take photos of any dramatically swollen joints. By the time a doctor appointment comes along, the worst symptoms may have subsided so having documented evidence of what is happening (and when) can be really helpful.

It does sound like you might want to ask to be referred back to Rheumatology - even if only to rule out RA.

If they say that it is RA and suggest DMARDS again, then you should probably try them. These are the only drugs that actually control the disease and prevent more damage. They have worked for me. Last time I had any stiffness or took any pills other than methotrexate was about 12 years ago.

NSAIDS are far from being without side effects (notorious for stomach bleeds) and the other non-DMARD option would be steroids - which can work very well initially but have big long-term problems.

Best of luck!