New and confused!

[VickyHU]

Hi everyone, I guess I am looking for comparisons or reassurance really. I was diagnosed with RA in March this year after a debilitating flare up last December. I am still trying to find the right combination of meds, started Sulfasalazine in March, added Methotrexate in August and more recently have added Hydroxychloroquine.

I recently had an ultrasound scan on my hands as that's where the swelling and pain has been consistent. I also am experiencing quite bad pain to top of back and neck however my consultant has had a look (with her eyes - no scans/x-rays) and says it's Osteoarthritis in that area. Anyhow, yesterday she called me to confirm that the ultrasound came back clear and that my RA is in "complete remission"; when I asked why are my hands still painful and swollen she said that it is likely to be wear and tear and to keep my hands warm at all times.

I guess what I would like to know is, with RA is it normal to be in pain and joints be swollen whilst in remission? Also, are you mostly pain free when on the right meds?

Thanks in advance ☺️☺️

[AgedCrone]

I’m afraid it looks like your rheumatologist was right & your hands & neck pains are the result of Osteoarthritis.

I was diagnose with RA 20+ years ago & for years had no particular trouble with my neck or my hands, but now they are my main problems.

Have you ever had any sort of neck injury or neck surgery? My OA is apparently the result of surgery on my neck, after a car accident, way before I was diagnosed with RA.

[VickyHU in reply to AgedCrone]

Hi there, thanks so much for your message and I hope you are well.

I have never had either a neck injury or surgery, in fact never had any surgery anywhere. I have sat at a desk most of my working life so maybe that has something to do with it?

Do you take any meds for your Osteoarthritis? I am so new to all of this, have focused on reading books regarding how to reduce inflammation through diet and exercise for RA so know nothing about Osteo I'm afraid.

[AgedCrone in reply to VickyHU]

I only take painkillers occasionally, but mainly I rely on physio exercises for my neck,& in fact the neck damage compressed nerves in my neck which travel down my arm and caused a carpal tunnel problem, which I recently had operated on and I thought it was 100% success, but now it turns out because the nerves were compressed for so long, they are playing up again and I might need some other sort of surgery on my wrist.But I will only opt to go for that if I’m in a lot of pain not just because it’s awkward.

Obviously speak to your Rheumatologist, but I did find the Physiotherapy was a Great help on my neck. But you have to keep doing it …you can’t just go along and do it once ..it’s a lifelong exercise. ..but well worth it.

[VickyHU in reply to AgedCrone]

Thanks so much for your advice, my friend had a carpel tunnel op last year so I sympathise, she was in agony with it bless.

I have a local physio who helped me out before my flare up - who knew I’d probably had RA for a while, it just hadn’t flared! I’ll pay her a visit I think, although I haven’t actually officially been diagnosed with Osteobso maybe that’s something I need to chat to my GP about.

Thanks again, you’ve been really helpful, and I hope you manage without an operation on your wrist. 🤞

[Annscottie]

Hi Vicky. Like you I was diagnosed with RA in March. I was started on prednisone and then gradually built up sulfasalazine intake along with hydroxychloroquine. The prednisone dose was slowly reduced until I stopped taking it in May. I have been very fortunate that these medications worked for me and, apart from early morning stiffness in my fingers, I am pain free in all my joints. ( My toes aren't sore but feel strange!)

I was told at my last monthly rheumatology appointment that I was in remission.

I don't know if any of this helps to answer your question apart from the similarities in time and medication and the fact that I have no swelling or pain.

I hope that you manage to find something to help manage your pain.

[VickyHU in reply to Annscottie]

Hi there Annscottie, thanks for replying, that's great you're pain free! It's funny as my toes feel strange too - almost like little shots of pins n needles in certain toes, however only lasts a split second repeatedly when walking sometimes! If that at all makes sense ha ha!

Thanks again, keep well.

[KittyJ]

Welcome to the group Vicky😊 If you have damage to your joints then you can be in pain even if your RA is under control. Have you been given any pain meds for your OA? My joint damage is from RA not OA and is a constant despite my meds working well and I take pain meds most of the time. You could self refer for physio and they might be able to help you with exercises to do for OA ( sorry it’s not something I know a lot about but this is what my husband did, he has OA) I hope you get some relief soon but do keep talking to us for support.

[VickyHU in reply to KittyJ]

Hi Kitty, thanks so much I’m so glad I joined already!

I haven’t been officially diagnosed with OA, my RA Consultant said I had it when she had a feel of my upper back and neck. Maybe I need to chat to my GP about it. Will definitely think about physio too, thanks.

As far as I’m aware I don’t have any joint damage as yet from the RA, and from what I’ve learnt in this group it does sound like it’s leaning more towards OA I suspect.

Thanks again for your kind message and I hope you keep well.

[KittyJ in reply to VickyHU]

You’re welcome, keep talking, it definitely helps 🤗

[oldtimer2]

I had been dismissed as 'Osteoarthritis (OA) pain' (they make it sound as if the pain is nothing when they say this!) but happened two years ago to see the specialist nurse when they were particularly bad. She consulted with the rheumatologist, and after the tests I started on adalimumab (Imraldi). Within two weeks this so called OA disappeared, I could use my hands again better than I had for many years and others commented on how much better my hands looked and how less swollen they were. So....if you feel the condition is being incorrectly dismissed, go on complaining.

[VickyHU in reply to oldtimer2]

Thank you so much, apologies for delay in replying. Keep well.

[karenf-NRAS Administrator]

Morning Vicky

If you would like support, information or just someone to talk to, our NRAS Helpline is open every weekday from 9.30 am to 4.30 pm, nras.org.uk/helpline/, 0800 298 7650. Or you can take a look on our website nras.org.uk.

[VickyHU in reply to karenf-NRAS]

Thank you Karen 🙏🏼.