I have never been seen face to face but was diagnosed with RA during lockdown based on-
Severe symptoms of fingers locking, nodules appearing on the back of my Achilles tendons, not being able to walk or make s fist etc.
A anti ccp reading of over 500
Already have another autoimmune disease , ulcerative colitis
Grandmother had RA
I started on pred and then methotrexate and go for regular bloods which have all been fine. Symptoms reduced as well and can live a fairly normal life. My only worry is my knees. They don’t hurt as such but look swollen and dented.
Just wondered what happens generally at a face to face appointment and how long it usually lasts. I read it takes 3 hours? Also my appointment is in a few weeks and it will be cold . My knees are the source of the topic I want to discuss so do I go in wearing shorts but then I will look ridiculous in this weather ?!
I’m nervous because the RA nurse can sometimes be quite rude so am feeling the nerves as well as to what she will say about my knees.
Thanks all x
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Fenella34
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Face to face appointments usually last no longer than 20mins. They will generally examine your joints, especially hands. If you want your knees examined, you’d be best wearing a skirt or dress, or loose fitting trousers that can be pulled up. The appointments aren’t really much different to the phone consultations. They will ask about how your current meds are managing your symptoms. They may say they want further blood tests, scans or ultrasounds but they are organised for a later date.
Are you in the UK as generally RA meds are prescribed by a Consultant not GP or nurse? Just wear whatever you want, how does it matter as trousers can be dropped down or pulled up same for skirts. Three hours, crumbs you’ll be lucky to get 30 minutes ! But if you add in tests then it will mount up but likelihood is that it’s be appointments to get done, not done on same day. Try not to worry as getting diagnosed is the worst bit.
I am in the UK. My GP didn’t prescribe methotrexate, the hospital team did. To be honest because I also have ulcerative colitis, my gastro team helped get me seen by rheumatology much quicker then if it hadn’t been the case.
Do feel a bit more reassured now so thank you everyone. I am glad it isn’t a long appointment as some have said it was and they had to give samples of blood and urine as well as then being told to go for X-rays during that same appointment? I can deal with a twenty minute chat so hopefully that’s what it will be with any follow up x rays arranged for another date
Good advice from all. Take a urine sample with you - get a pot from your GP surgery - saves time at your appointment - and as the others have said, loose clothing, something to read while you’re waiting and a written list of questions to ask. Always worth taking someone with you if you can as you come out of a first appointment in a whirl and will forget what you’ve been told as it’s all so new.
Do not put up with rude nurse - it’s your body, your life and she/he doesn’t live with it. Report her/him straight away - it’s unforgivable. I am a retired Practice Sister and would have sacked any of my team who were rude or abrupt to any patient. All the very best of luck!
Thank you. Hopefully I won’t see her or if I do, she will be polite, if not, I will report her.
I didn’t know about the urine sample. I guess if you can’t “go” at the appointment, you just have to provide it another time?! My GP is extremely hard to contact so don’t think I will get it in time.
This isn’t really a new patient kind of appointment as already been diagnosed almost four years and had phone calls. I guess they just feel that they had to see me as never been seen in person.
I get asked for urine every time but I just produce one when there. You can pop in to your doctors and get a pot without speaking to doctor or use any clean sealable container. In September when I was hospitalalized they were getting urine samples 2 or 3 times a day. I asked them if they were selling it on some black market . 🤣
I don't know why I have been reading that the appointments could take up to 3 hours? Hopefully it won't be. It's easier for me to not worry so much if I know I will be only in the consulting room for 30 minutes or so. I should have said in my first post, but I am terrified of hospitals and am going alone. I never thought I would be in this situation at 38 with 2 chronic health conditions but I know I am better off then some.
All my appointment letters say to allow 2 hours, but I’ve come to the conclusion they are covering their backs in case they are running late. Most appointments last about 10 minutes. Occasionally, usually if there is something specific I raise, they last slightly longer but never more than 20 ish minutes. Sometimes they request extra tests such as blood tests or x-rays but I can choose if I want to do them the same day or at another time.
As for clothes, just wear something comfortable.
I totally understand where you’re coming from. I was diagnosed at 32 and have always had to attend hospital appointments by myself. I often take a list in with me of things I want to discuss as I often find if I don’t we end up focusing on the first thing I mention and then when I get home I kick myself for forgetting to mention something else . I write my list in priority order
I can sympathise with you. I also was diagnosed in lockdown without being seen. Or heard actually. It was all via text and email. My symptoms were also locked up and twisted fingers.
My first face to face probably took an hour. Had X-rays and was prodded a bit.
Firstly, I woiuld say don't worry. Whoever you see is there to help you and wants to help you. You will certainly not be there for 3 hours. I would say 20 to 30 minutes unless they do tests there and then. He/she will lead the questions but if you have anything you want to ask them, write it down and take it with you. If you forget to ask, it's too late afterwards and very frustrating. I have done it myself. I hope you have a good consultation.
I’m already on a proper medication regime so not waiting to start anything. This isn’t my first contact with them as had many phone calls and blood tests. But it is my first face to face meeting
Hi the examination only takes about 30 mn. They just test your mobility, see how far you can bend make fists .Just wear wide leg trousers so they can inspect your knees ,don't worry it will be fine ,they are there to help you ,so tell them everything that is worrying you
I feel really shocked you’ve had no face to face appointments. I too was diagnosed during lockdown and this hasn’t been my experience at all. You’ve had great advice and yes, they will examine your hands and feet and any other areas you highlight as a problem. It’s your chance to ask everything so write down your full history and all the questions relating. Try not to dread it, I am always so grateful and looking forward to my appointments as I know I’m being dealt with properly. I hope you bond with your consultant. This made a huge difference to me and she honestly changed my life. Hopefully yours will be a positive experience too.
please don’t worry the Consultant knows what he looking for. I have had for 20 years hospital in London and never had a 3 hour app. Think first one 1/2 hour now only 10 mins. Write down what u want to ask so u don’t forget. They very understanding x
Yes, I think in the uk 3 hours means 2 hours 50 minutes waiting and 10 minutes with the rheumatologist. I have never been asked to have a urine sample, and the first ever rheumy appointment they didn't even want blood tests because he had decided there was nothing wrong with me before I had even walked in. We sorted that one out with a formal complaint, and he finally admitted he had probably missed something and asked me to have a second opinion.
As this will be seen as a 'follow up' appointment it probably won't take too long. But you will have to be firm if you want other joints looked at because they do seem to only want to look at hands.
I hope it goes smoothly for you and you don't spend 2 hours and 50 minutes waiting!
Dear FenellaSurprised it has taken so long to be seen properly , it may not be the RA Nurse you have seen but together with the consultant and even another nurse. Just try and relax you are the priority of the meeting they are there for you to make you better not upset you. You can speak to her about it if she is like it again no one should feel uncomfortable about anyone who works in a hospital . I hope all goes well for you.
Wishing you good luck for the day and wear trousers much more comfortable than shorts in this weather
20 minutes ix the norm, don't worry about shorts wear what you want, consultant will look at your bloods , joints In knees and fingers ask about meds etc, nurses are usually really nice,good luck.
I think my first appointment took a couple of hours but a lot of that was spent waiting! I was weighed and measured, had bloods done, was sent for x rays on hands and feet and then saw the consultant. I also had an ultrasound on my hands and feet which was where they saw the erosion. I was given some leaflets about the different meds they were going to put me on. I was happy to have it all done in the one visit as the hospital is the other side of the city and takes a while to get to!
Overall, after consultation, blood tests and x-rays, time can mount up, but 3 hours is a bit excessive. I'm sure you'll be done and dusted within the hour.
Make sure you write everything down that you want to discuss and any questions you have and don't leave until you are satisfied they have all been answered.
My rheumatologist is lovely and doesn't hurry me, hopefully, yours will be the same. If you're not happy ask to be referred to a different one, but I'm sure it will be fine.
Go in the clothes you find comfortable. If you have to get undressed there are always nurses to help you, or your consultant might, mine does. Good luck! x
Hi Fenella. I was 21 when i was diagnosed with RA. (I’m 52 now). I started getting awfully painful joints. Just out of nowhere. I was kept in my local hospital for 5 days. They did loads of tests. I can still remember my Consultant, sitting on my bed. My mum next to me. (She was a nurse too). My lovely Consultant said. ‘We know what you’ve got young lady. You’ve got arthritis!!) My mum’s face dropped. I was relieved to get a diagnosis. At that point i had, had a bad flare up of conjunctivitis. Like glue in my eye. A very painful, red & swollen right big toe & a painful left shoulder. I was in agony. But so desperate to get home to my husband. (We’d only been married 6 months). I kept nagging at them to let me go. The Sister looked at my mum. She knew i wasn’t up to it. But they agreed. Then literally. Within a day of leaving. The inflammation spread to every single joint. I had aged 70yrs overnight. My new husband had become my carer. An awful time. I was using walking sticks. On loads of very strong anti inflammatories. Plus steroids. Felt like a zombie.
What made my diagnosis extra sad. Was. I had caught chlymidia. An STI. My husband was the only man i had ever slept with. When the Consultant told me this. I confronted my husband. We had a blazing row. This was in 1992. Before the internet was coming out of our ‘asses’. The old fashioned library was where you got your ‘info’ from. It was embarassing asking about STI’s. So now the internet’s great for things like this. My Consultant told me that these infections can lay dormant for months/yrs. Sometimes there are no symptoms. My husband denied cheatimg on me. Which i eventually believed.
My RA was later diagnosed as Uveitis. As i also ‘inherited’ Iritis. Inflammation of the Iris & Glaucoma. When i have Iritis i have to put loads of steroid eye drops in my eyes. I’ve had loads of steroid injections in my eyes, 2 catarracts removed. Steroid implants injected into my eyes. Loads of eye procedures.
I get angry that all these yrs later & forever i will be having 6 weekly infusions of Infliximab. All because of an STI.
But i’m also so grateful for the NHS & the technology!!!!
I always write a novel. Sorry.
When i read about you having 2 chronic conditions at the age of 38. It reminded me of my ‘story’. Good luck with your app. Most hospital staff are lovely & very sympathetic. I’m sure your app will be fine. Just expect a bit of a wait. Maybe take a snack with u. Bananas are useful. (Oo err). Xx
So sorry it has taken me so long to update.The appointment was as you all told me, fine. I was barely in there for ten minutes and the nurse was lovely. She was not shocked by my knees and said if they become really painful, then she will drain the fluid off but other then that it was all OK.
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