What Can we expect?

My recently RA diagnosed 15 year old daughter has finally had her appointment brought forward ( thank you James Cook Hosp!) we aren`t sure what will be done / asked at the initial appontment with the rheumatologist & was hoping sombody could allay Ellie`s fears ?! Will they want more blood tests? Will they finally prescribe somrthing to help the pain...1001 questions to ask?!

Much appreciated!

x

15 Replies

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  • She will probally have more x-rays,they will listen to her andsee what symptons she has. It might help if you compile a diary of how she is day to day until she goes back. You might want to do the same as it will help her. She will probally be started on painkillers not for certain. They should take their time with her and listen to what she is saying. Write down all your questions so you can get an answer. The more evidence you take the better for her.

    I can't tell you any more than that. I hope she gets on alright. Let us know how she gets on.

    Sylvi.xx

  • I'm 28 so the protocol is possibly slightly different from when I was diagnosed last year. However it might make it easier to know what other people had. As Sylvi very wisely suggested, keep a diary. I could not believe how invaluable this was as I couldn't remember one day to the next with the pain I was in. Nothing epic just a quick note of symptoms etc...

    My first appointment was around 2 hours, on arrival I had baseline evaluations (height, weight, urine sample - if you want to and can, pick up a bottle from your GP and do the morning of appointment - I just find easier at home!). I had all my joints examined, an ultrasound on my hands (which was clearly my doctor's newest toy!), a chest X-ray (for which I recommend clothes that are easy to change in and out of - I had to get help from nurse as i stupidly had not asked my mum thinking I needed to do myself) and an X-ray of my hands and feet - as these are usually where the first signs of any deformity - I didn't show any so don't be worried, it's just normal procedure.

    I was diagnosed there and then as had previously had all the relative bloody tests through my GP. I was given an appointment 1 week later to 'council' me on meds and I think I was started on steroids and MTX later that week.

    I think because she is young they will be quite quick in turning things around but don't be afraid to chase things up if you don't hear when you expect to.

    Good luck x

  • wow, you sound as though you had a very good first appointment. I had a ten minute appointment were I was given a prescription, sent for a foot xray and told to come back in three months. It was my GP who gave me all the support.

  • Hello,

    Pretty much the same as above but I was given a steriod injection that really helped my moblity, not sure if they would give it to a 15year old??

    But, just want to add that my first appointment gave me an answer to whats been happening, some hope (as I assumed I would be that bad forever) and best of all a goal..

    That was only a year ago but I look back now and since that day I've only got better and better (rarely need a painkiller now!) and I hope and pray it will be the same for your both you and your daughter :)

    xx

  • Hi, good answers above. As CptJen says a nurse will carry out a pretty basic medical i.e. height, weight and urine. The consultant will give her a physical examination checking joints and looking for any other problems, he may then refer her for xrays,scans etc and blood test.

    I know the units are very busy but I'd advise you to contact the unit and ask the procedure for children as it may be slightly different for under 18's, also, they may allow you to take her for a look around so it's not so scary when she attends.

    Beth xx

  • I can't really add to the above as some good advice given. But I just wanted to add my support and best wishes, no one deserves RA but it makes me so sad to hear of young adults and children who have it. Hopefully the consultant will hit it hard with the right drugs first time. very best of luck to Ellie. Have you informed the school yet. I would suggest contact NRAS and getting some information sent to your home address to take into school and discuss with her teachers. To make it easier for Ellie you may want to ask her if she want to invite her close friends around for a chat with you after your first appointment so you can explain what is happening. It could be hard for Ellie to try and explain without getting upset so I'm sure she would value your support with that. There will be times when Ellie gets angry and upset all you can do is be there for her. Best wishes Mel

  • The hospitals are all a little bit different, and I would hope that they would treat a 15 year old with extra care. However, as well as preparing for the best possible appointment as CptJen's above do also try not to get your hopes up too high in case you don't have as thorough a service. My first appt was more like Mel's in that it was short, and appointments for x-rays and ultrasound followed a couple of weeks later, and then only after that did I get the prescriptions (and then it took nearly 3 months for the drugs to start working). So although I really, really hope you come out of the appointment with a clear plan, and are started on proper treatment straight away, just keep in the back of your mind that it might take a bit longer still. Good luck. Polly

  • Yes I should probably have said that not all of my appointments have been like that!

    I think just being prepared and asking whatever questions you have - the are no stupid questions as you're not a doctor. The more you are able to ask, the more you'll probably find you get out of it.

    X

  • Hi, I just want to send Ellie (and the rest of the family) my best wishes - I am a lot older ha ha but my team at North Tees Hospital have been great and I'm sure they'll be the same at James Cook! I was examined, x-rayed and sent for bloods at my first appointment last September and had my diagnosis within a few weeks. As Ellie has already been diagnosed I'd hope that they would start her on a DMARD straight away. I was only told to keep up with paracetamol in the meantime but it is usually your GP who will deal with the pain relief side of things - you can ring them now - I was given Tramadol which was very strong but very helpful. Good luck!

  • Sorry, I have just realised we can send private messages on here - if there's any way I can help please feel free to get in touch and do let us know how it goes.

    Julie x

  • Aww thanks everybody, acually the Dr`s secretary rang this afternoon as they have a cancellation tomorrow.. so we are going tomorrow !!

    Ellie has read all your comments , school are allready aware , I actually work there & told them as soon as her results came through, they have been fantastic, as have her friends..(crude remark on Facebook from a prat in her year but only 1..she handled it brilliantly !)

    She has been off again this week.as well as pain in knee & now ankle..awful nauseau & cramps...that could be the Tramadol?

    So lovely people this time tomorow night she will hopefully have some meds, pain relief & medical advice. A smile back on her beautiful face is also a plus!

    xx

  • Yes, the nausea could be the Tramadol that's for sure. It's good to hear that school are supportive though. I hope the appointment has beena success - let us know how it went!

    Julie x

  • Well 3 hours at James Cook & a superb Dr. Rheumatoid Arthritis, Lupus AND Sjogrens Syndrome both diseases of the immune system) is the outcome.

    Ellie had more bloods done, was given a steroid injection & precription for the arthritis. We have appt for mri scan & eye dept as the Sjogrens can cause sight probs.Finally a answer to years of pain, granted not what we really wanted to hear but as she said At last someone who believes me Mum & iyt`s not `just growing pains` We`ve had a few tears & are wondering what the next chapter will bring, bu at lest she`s being treated!

    thanks all. x

  • Mixed emotions for you, as you say at least you now know. It must be really hard for all of you as someone who has RA I know what your daughter will be going through and as a mum I know you would do anything in the world to take her pain away. At least you have a good DR so it will make the journey a bit easier for you all. Good luck to you all. Love Mel

  • Hi

    I would echo a lot of what has alraedy been written but just wanted to draw you attention to the various sources of help for you and for your daughter, apologies if you have already accessed this:

    arthritisresearchuk.org/~/m...

    arthritisireland.ie/go/publ...

    arthritiscare.org.uk/AboutA...

    arthritiscare.org.uk/Public... - this is a dedicated area for young people including a helpline contact.

    The other charity involved in JIA is the CCAA and you can access their information and help on this link ccaa.org.uk/

    Very best wishes

    Lorraine

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