Rheumatology nurse appointment disappointment - NRAS


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Rheumatology nurse appointment disappointment

Barb66 profile image

Just been to see the rheumatology nurse. I was in and out in 5 minutes and didn't feel I could ask anything. She just said well you're improving and it's only 3 months. Your inflammatory blood markers are down, so I'll see you in 3 months. I said when would the pain go and she said they were only interested in the inflammation and there was no magic pill, but if I was still not 'well' (and I use that term lightly) I'd be prescribed something else too. I said I'm still not able to go back to work and she said if I wasn't significantly better in a month she'd talk to the rheumatologist ... I feel very disheartened today

25 Replies

Did she give you a steroid jab? I always get one when I see either the clinical nurse or the rheumatologist. My gp can give them too.

Not sure that is right either. I have terrible pain and inflammation that's visible but my inflammatory markers are always normal. They shouldn't be judging your condition on just the blood tests

Jacey15 profile image
Jacey15 in reply to Frankiefarr

Frustrating isn't it. My ESR and CRP are always normal even when my joints are swollen and hot. I've seen a few clinicians that just go on blood results rather than how I'm feeling and how much pain and fatigue I have. I hope you have better news on Monday.

Barb66 profile image
Barb66 in reply to Jacey15

What would I do without this forum! Very frustrating Jacey. I feel like I'm being dismissed because of my bloods

Nickijk73 profile image
Nickijk73 in reply to Jacey15

Jacey15 that's exactly how my results are always looked at - even when I'm sat in a wheelchair because I'm so inflamed I can't physically walk without crying(or taking forever - why is it that they can't understand you not using a stick to help you get around? What part of 'my hands are so sore it'll only make them worse' do they not get?!😤) but I can totally sympathise with you on how frustrated you get,a lot of the so called specialists definitely need retraining in my opinion!!

Sorry,rant over x

Barb66 profile image
Barb66 in reply to Frankiefarr

Really? Really nice to know Im not alone. I feel I've failed the test!

I feel so lucky when I read stories like yours. I'm new to all this, I was fast tracked to a rheumatologist because that's what they do in my area.

I've got sero negative inflammatory arthritis yet I was given a three month course of steroids and now take hydroxychloroquine at my annual visit the chap I saw write to my GP saying he thought I might be getting sjorgens even though I've not got the markers for that either.

My pain has pretty much gone now which is really good, but I felt listened to which makes a big difference.

As she said its only 3 months and most of the RA meds to take time and so it is early days and its an unpredictable science as well. Be patient for a little while longer . xx

Barb66 profile image
Barb66 in reply to medway-lady

You are so right Medway lady. I'm so worried that people won't believe me

Nickijk73 profile image
Nickijk73 in reply to Barb66


Pls don't fret about what other people think or believe - it took me almost 3 whole years before the right drug combination kicked in for me (pls don't let that scare you) but everyone is different,with some reacting well to the first treatment they're put on,and others having to try many different ones,but in each case,because of the way they work,I usually give them about 6months each before I completely wrote any of them off - I know it feels like hell when you're going through it,but it will definitely be worth it in the end when you do find the right meds for you.... even now im in the midst of a mini flare due to a fall last week,but even though I'm falling asleep at the drop of a hat,and my fella(who's deaf in one ear) can be watching TV right beside me and I won't have a clue it's happening,it's still nowhere near as painful or scary as it was before it was under some form of control. Be patient,you will get there,just don't be too harsh on yourself in the meantime - that nurse on the other hand definitely needs a kick for her behaviour!! So much for the caring profession when they act like that!!

I'm lucky, my rheumy team told me not to worry. They said you can have it severely but your markers be normal. They said it's why we never go on blood tests alone

Barb66 profile image
Barb66 in reply to Frankiefarr

If mine had said that I would have felt ALOT better!

Exactly what my Rhumy told me. Bloods are not always an indicator of RA. I am Seronegative by the way. My Rhumy team are fantastic I feel so lucky.

She is only interested in your blood markers? ...she is allowing you to suffer in pain for a month B E F O R E she talks to the rheumatologist?....That's absurd! I uderstand how fragile you feel when asking for help to curb your pain and you get ignored. Please understand your nurse is wrong, you need and you deserve to have your pain controlled. You are living in a 1st world country. Can you seek a second opinion and get a steroid jab?

I know how hard it can be i.e. Pain and inflammation , Ive had Ra,OA since 2014 and I'm still not controlled I've been medically pensioned off from my job and I'm on a Bisomar (Benepali) along with 20mgs off mtx having failed 3 dmards so I'm giving it another month and then they can try something else

I too had low inflammation markers but was lucky enough to have a rheumy who looked at the person, not the bits of paper. So I'm sorry you had a nurse with such a rubbish attitude. She is right, in that three months is not very long so you could find yourself much improved in another few weeks - but what a dreadful way to express it!

But don't worry about them not believing you - if they didn't you wouldn't be prescribed these drugs in the first place. I think it's more a reflection of there being too many patients and not enough staff, so everything gets rushed. And I don't thing many of the staff realise how important these appointments are to us, it may only be 5 or 10 minutes but we've been waiting for it for months! Don't be disheartened. Get a bit angry instead and tell yourself that you'll be extra assertive at the next appointment and sit tight until you get listened to.

I think they take too many on for their clinics so it's just like been on a conveyor belt. My rheumatologist said I was in remission. when I objected he said markers were down.I asked how come that is if I am in agony and my wrists swell up in pain that whatever I try do it just makes it worse.Plus some days I can't even use my left hand.They just bla bla bla and you are left open mouthed.

Thats exactly how I felt and as specialist nurse myself I felt even more disappointed in the way she treated me! To be fair we'd had a bit of snow and my appointment had been moved earlier so she could go home earlier, but Id waited three months for that five minutes!

I was very lucky to have understanding and caring people diagnosing and treating me all the way. On other occasions, not necessarily RD related, I just refused to leave a treatment room without having got satisfactory answers. I just insisted in a friendly way to at least be shown a way forward to give me more strength to help myself and not to feel abandoned. As was mentioned before, most NHS staff are overworked, stressed and sometimes may appear aloof and uninterested, but I think they are in the NHS because they care and want to help us. I hope your next appointment will be better for you. All the best.

Barb66 profile image
Barb66 in reply to stbernhard

I just don't know what happens to me as a patient. I'm a fairly senior mental health nurse and yet I become a complete ninny when it comes to myself. I think the anxiety and guilt of being off sick and not believed, turns me into a wimp! I shall save your reply to arm myself next time! Xx

I went to see a rheumatologist a year or so ago. He was looking & talking to my mother in law than me. Had bloods & x rays done.

Next appointment was with nurse who told me I didn't have RA but osteoarthritis told me to keep taking the co codamol & naprixin then discharged me.

I had nothing explained to me. Got a better service of my GP who explained everything to me.

That sounds horribly familiar. Great big gentle hugs Jan

OOOO !!!!! Just reading your disgusting experience made my blood boil. What an attitude for a rheumy nurse. I would have suggested she retrain or was obviously in the wrong job. Not being able to go back to work brings it's own anxieties of which she has no idea. Phone your consultants secretary and ask her to arrange an emergency appointment for you. Don't wait another month - please phone. You will be surprised what his secretary can do. Take care, thinking of you xxxx

I had a new nurse this last week- and my experience was exactly the same. My knee was so painful I was walking with a stick, and my hands were swollen and useless- yet she just said 'My blood results are fine'. I asked about steroid injections and she said they only did them for extreme inflammation and then 'the doctor has to squeeze the poison out before they put the big needle in' Really??? I felt totally dispirited...

Oh dear Jessica that sounds worst than my experience. What has happened to nursing care. I'm ashamed to be a nurse sometimes! Xxx

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