Update as promised!: I finally got an appointment with... - NRAS

NRAS

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Update as promised!

Huckleberryfriend profile image

I finally got an appointment with the consultant. Those of you waiting they are out there....I was offered at least 3 times for today after chasing yesterday. After the re-referral through rapid I got the appointment within a week which was amazing. They can't do any xrays of course, but they have re-tested bloods to confirm whether it's sero-negative or positive. She didn't like the drug combination I was on at all, and wants to get me off it asap as patients who get covid on it do very badly. So once I can taper off I'll be moving to Methotrexate. I've been given a diagnosis of Inflammatory arthritis, and she sent me away with a big fat leaflet on RA. Felt a bit weird if I'm honest as they didn't really do any tests, just felt my joints, asked questions, looked at the photos I'd taken before the steroids kicked in. Thanks to all of you that have answered my questions these last weeks, you've been a lifeline in what has been a pretty challenging few months. 🙏🏻

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Huckleberryfriend
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13 Replies
Boxerlady profile image
Boxerlady

Great news that you've got a diagnosis and will be starting suitable treatment soon. Your appointment sounds more or less the same as mine a year ago apart from a few X-rays - they go by symptoms (feeling joints and photos of swelling) more than anything else.

Huckleberryfriend profile image
Huckleberryfriend in reply to Boxerlady

It was good I took photos before the steroids kicked in. She put pressure on two areas at the top of my chest and both my kidneys -I wasn’t sure why.

Mmrr profile image
Mmrr in reply to Huckleberryfriend

She was possibly testing for fibromyalgia tender points by putting pressure at the top of your chest and over the area of your kidneys.

If they were not sore, excellent!

helixhelix profile image
helixhelix

Great! A good rheumy can spot RA by shaking your hand (not that they do that these days of course!). And they don’t hand our prescriptions for MTX unless they are sure, so don’t fret about not having an x-ray before diagnosis. But do keep it on your list of questions for next appt as you should have a baseline chest x-ray sometime soon.

Mtx takes a while to work, so a bit more patience needed. But it works great for the majority of people.

Huckleberryfriend profile image
Huckleberryfriend in reply to helixhelix

It seemed she did! Remarkable. Yes, she does want to do a baseline chest X-ray but for now had a good listen. I think patience is going to be easier now I know what’s happening :)

allanah profile image
allanah

Good news !!! Glad you got through and getting treatment !,woo.....😀

Huckleberryfriend profile image
Huckleberryfriend in reply to allanah

Yes, will feel better once the steroids are tapered off. I think she can get me down to 10 and then onto the methotrexate in a couple of weeks.

Just being diagnosed is such a relief. It’s not a disease anyone wants but now you know why. MTX takes time to work but continue to keep a diary so you can pin point any reactions no matter how small. Any questions someone on here will help.

I’ve had RD for 4 years and I still have massive support from people on here.

Huckleberryfriend profile image
Huckleberryfriend in reply to

It is a relief strangely. How I ever thought not being able to walk downstairs at 45 without hanging on was normal 🤷🏼‍♀️

in reply to Huckleberryfriend

I know what you mean. It creeps on slowly and you just don’t realise it had become the norm. Looking back I now realise I made excuses and hadn’t noticed how bad it had got just got on with it 🙄🙄

Mmrr profile image
Mmrr

A good outcome diagnosis and treatment wise, excellent.

Huckleberryfriend profile image
Huckleberryfriend in reply to Mmrr

I was quite impressed with her. She was efficient and clearly knew what she was looking for. Obviously didn’t want me there long after finding what dose of steroid I had been on 😩

janmary profile image
janmary

Good to have a doc who listens looks and examines the patient rather than relying totally on the ‘numbers’ - glad it went well and good luck with treatment

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