First NHS RA appointment soon: Hi all, I'm new here and... - NRAS

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First NHS RA appointment soon

nicolacrafty1 profile image
17 Replies

Hi all, I'm new here and have suffered with joint issues for some time. Things came to a head recently when the pain was so bad in my hands at times (comes and goes frequently) that I was awake most nights of one week crying so I finally saw my GP. Blood tests followed and resulted in a rheumatology referral, I wasn’t surprised as I’d loosely guessed that was my problem from things I’d read and how it fit with my symptoms. My first appointment is soon and I just wondered what I can expect? Any insight would be greatly appreciated for this newbie.

Thank you

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17 Replies
Madmusiclover profile image
Madmusiclover

Aw. I hope you get some good treatment. They asked me lots of questions, looked at blood tests and examined joints etc. You might like to look at the resources on the NRAS website. I’ll dig out some links. There’s a good one on medications. Here you go: nras.org.uk/resource/newly-...

They also have a helpline.

nicolacrafty1 profile image
nicolacrafty1 in reply to Madmusiclover

Thank you so much for the speedy reply! Thank you for the link too, that looks most helpful - wish me luck 😀

Madmusiclover profile image
Madmusiclover in reply to nicolacrafty1

We all do! Report back won’t you?

nicolacrafty1 profile image
nicolacrafty1 in reply to Madmusiclover

I will, 20 June

janmary profile image
janmary

It might be a good idea to take someone with you - a lot of things to take in at a first appointment and its easy to forget both things you need to report and feel muddled about information given.

Welcome and good luck!

Flor1rence profile image
Flor1rence

hello I had my first appt few weeks ago and loads of questions asked blood test etc now going for many more tests, in agony most days. Good luck and keep us posted x

Haz58 profile image
Haz58

For your appointments write down exactly what is happening, where the pain/ swelling is etc, plus any questions you have now. Once you get in there you will forget a lot. As has already been said take someone with you. It's a lot to take in. Good luck. X

oldtimer profile image
oldtimer

There's a whole section on the NRAS website on how to prepare for your first appointment. Basically write a summary so you don't forget anything before and after. Wear easy to remove clothing. Be prepared for long waits.

Annscottie profile image
Annscottie

Hi. I had my first consulation in March. Like you was in so much pain. My GP had made referral. Had blood test and blood pressure taken. I took a list of other meds I am on and past 'serious' illnesses. I was given steroids as well as RA medication to start taking gradually. There was a lot of information to take in but consultant gave me NRAS booklets and VersusArthritis ones too. I am glad my husband came into the consultation with me as he remembered things that were said that I hadn't remembered. I have also found this site's members really helpful. It's a steep learning curve and a bit overwhelming but the care I have had from the hospital has been first class - meeting with rheumy nurse and on another occasion a physiotherapist.

Best wishes nicola. Hope all goes well for you.

Morning. Hope you aren’t too bad today.

First thing I would say is to get yourself a notebook. Write down and date any pain/ stiffness/ meds/ appontments/ rest/ sleep etc

Read all the NRAS leaflets, and if any questions arise, make a note of these (in your notebook) so you can ask them at your appointments.

It is good to have a record of things, as your memory won’t work as well. Your body is busy fighting 24/7, so your energy will go away..

Try not to be hard on yourself. A day at a time RA is your new travelling companion. It is not something you can defeat. Meds help, but these take time, so patience is your new friend.

I also recommend getting an IAPTS appointment to get some mental health support. It’s a lot to take in..

People on here are good for questions/ info, but everyone’s experience is unique to them, so don’t start overly worrying.

It’s a lot to get your head round, and that takes time. Be gentle x

Happy5 profile image
Happy5

Least you're on the road to getting diagnosis, treatment and support. I wrote down my questions so I could go through things with the specialist nurse.

All the best.😊

nicolacrafty1 profile image
nicolacrafty1

Thank you all so much, this is really helpful information. I’ll start on the nras material this weekend as well as making a list of symptoms/pains, etc and my question list 👍

Runrig01 profile image
Runrig01

Good luck with your appointment. I would also suggest stopping any anti inflammatory meds about a week before your appointment. So that they can see how your joints are, as nsaids will mask the inflammation. Have a think about how long the stiffness lasts, and what makes it worse, this can help indicate if it’s mechanical or inflammatory causes.

Angels54 profile image
Angels54

I only hope you get someone is good ,write things down as you may have questions you want to ask , hope you get sorted soon .👍

nicolacrafty1 profile image
nicolacrafty1

👋 Update Post!

So I 1st saw my consultant back in June and had bloods there with x-rays (hands and feet) and ultrasounds (hands) ordered. They were carried out July/early August and I saw the consultant again today for the results. It seems I'm not typical in that it's only affecting one side of me, which I gather is more common. The ultrasounds revealed 6 areas of inflammation and that with the blood results has confirmed RA. Steroids and methotrexate starting tomorrow (pharmacy didn't have them in stock today) and bloods every 2 weeks (I'm so difficult to get blood from so not looking forward to that!).

Overall, though I'm happy to get a diagnosis so I know I'm not going crazy!

KittyJ profile image
KittyJ in reply to nicolacrafty1

it’s good to actually have a diagnosis so you know what you’re dealing with and can work towards getting well. If you haven’t already looked, NRAS have lots of publications you can download on various topics that should help you. Any questions do ask here but bear in mind we can’t give medical advice but lots of practical advice on living with RA is our speciality. Welcome to the club no one wants to join 🤗

nras.org.uk/publications/

nicolacrafty1 profile image
nicolacrafty1 in reply to KittyJ

Absolutely glad to have the diagnosis so I know what I'm dealing with. Thank you for the welcome and yes I'll take a look at the publications (I did when I had the referral, but I'll look again more closely now 😊

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