I have my first Rheumatology appointment on Tuesday w... - NRAS
I have my first Rheumatology appointment on Tuesday what do I expect to happen and anything you would say I should ask?
I think the consultant will ask you all the questions and do a full examination. If you haven't had bloods done already, you will have loads done then. Possibly X-rays too. You should ask what tests they are doing and about antibodies - if you have a positive Rheumatoid factor and/ or CCCP(?) not sure if that's right - the progression might be more aggressive than if they are negative. Also ask about your DAS - disease activity score - you can look that up on the NRAS site! Also ask about what drugs they are going to start you on and side effects. Steroids might be used as a short term treatment - usually work well and worth taking (or having if injected). Good luck!
Thank you Jane that was good to know. My inflammation bloods have been up now for 12 weeks so the GP referred me as I have painful hands and feet. They think I might also have irritable bowel too which confused my GP. So much going on I will be glad to find something out one way or another. Thank you 
Hi Rockpool60, Expect a thorough examination, ex-ray's etc. Don't let them force you into doing more than your capable of. Just say STOP!. Ask them as many questions as you like, what's causing this pain, what will you do to to treat it, what's the long term prognosis, even silly questions ASK! & don't give up. if you don't understand the big words? say so, it's your life & future that matters most. Be honest & tell them everything, how you feel etc Good luck, hope it goes well. Take care. Mike.
Thank you Mike I must admit I am quite worried about it. Friends have been negative saying it is just viral fatigue or the menopause so have begun to keep quiet on how rubbish and how sore I feel each day. I will take your advice thank you..sometimes I think the physicians forget that we are actually the person that this is happening too and through no choice of our own. Thank you.
Hi Rockpool, the first thing that alerted me to a problem too was raised inflammation in my bloods. This was noticed even before I had hand or foot pain as part of general blood tests for my thyroid and fatigue. My hands became painful a couple of months later and feet a few months after that. My GP did further bloods which showed I was positive for rheumatoid factor. When I finally got to see a rheumatologist the appointment only lasted about 5-10 mins and he discharged me without running any further x-rays or blood tests with a diagnosis of carpal tunnel and flat feet. Needless to say I was left in terrible pain and it took a further private appointment with a different rheumy a few moths later to get the correct diagnosis of rheumatoid arthritis. I'm telling you this because I knew at my first appointment that I was being fobbed off and didn't have the courage to stand up for myself. I didn't ask the rheumy why he was running no further blood tests or scans and allowed myself to be left in pain as a consequence. I know this is a difficult time and you will be feeling vulnerable but do go prepared to ask questions and take a list of your symptoms with you. I made sure I took no pain relief or anti inflammatories in the days before my second appointment so the rheumy could see just how bad I was. Even if you do get a positive diagnosis there are excellent drugs available to help you. I've been on methotrextate for 4 weeks now and am feeling improvement already. I've not had to take any pain relief for weeks and am adjusting to my new life with RA. Best of luck with your appointment and I hope you get some answers.
Paula x
Hi Paula, I had the same experience when first diagnosed. My GP said "Oh it's probably RA- take some aspirin - at your age you must expect it!" I was 59. I asked for a referral,but she insisted it was not necessary.Luckily I had a contact who knew a Professor of Rheumatology and like you I saw him privately and a week later I had the diagnosis of Sero Positive,Palindromic,RA. He then passd me on to a RA Consultant who specialised in my particular form of RA, and I have jogged along - ending up on MTX which I find extremely effective - for the last 12 years without too many hiccups. In Britain we are so used to doing what theGP tells us we are almost hypnotised into inertia. The NHS is changing and we have to become more pro-active where our health is concerned...Kathy
Gosh Paula you sound like you had a rough time with that first man ..cheek to dismiss you like that..how did he know how you felt or how sore. I will take your advice and certainly don't want to be fobbed off as I am fed up of feeling like this..I have had 10 weeks of blood tests with raised inflammatory levels feel like I have the flu every day..not pleasant. I will not let them off. Thank you for your advice x Take care too x
It's often really helpful to write things down in advance, as sometimes you forget. So think about when you had first symptoms, and what they were and how it's changed. How do you feel in the mornings, and what hurts. What things do you have difficulty doing, and so on. But hope it goes welll and you get a good rheumy. Polly
Hi Rockpool - I waited 4 months to get to see the rheumy only to be told it was inconclusive and then had to wait another 4 months to be seen again and told it was sero-neg RA (with a low positive rheumatoid factor). I have not seen the rheumatologist since and that was over 6 months ago. I realise that because I live on an island I am unusually isolated but even so this is not good and goes against guidlelines.
On the first visit I was checked quite thoroughly and then asked a lot of questions relating to other aspects of my health. I had a chest x-ray re future use of Methotrexate and a blood test called an anti-ccp. My inflammatory markers were pretty raised and my GP gave me a print off of all my blood results for him to save time. Both times I saw him I went armed with questions and pain diary etc but both times he made it clear that he hadn't time for all that. He was polite and pleasant but brisk. Second time he put me straight on Methotrexate - but I had already emailed him some photos of my swollen knuckles and fingers and he said they were helpful. Like Paula the second time I took no chances and stopped all pain meds and NSAIDs 2 days prior to my apt. I also had my iphone set on record in my pocket which meant that I've been able to refer back to the consultation over the past 7 months which has been very useful!
There are other types of inflammatory arthritis that list IBS as one of the symptoms so make sure you mention this to the consultant as it could be very relevant. Good luck and let us know how you get on. Tilda x
Make sure to ask what your treatment plan is, and what you can expect from what is prescribed, there are no certainties with this condition, but a good rheumatologists should be able to give you some reassurance, what they won't give you is a time scale, but they should be able to get the inflammation under control.
Also, ask as many question as you like, nothing should seem too trivial? Be assertive, it your health and with this condition you must empower your self with knowledge. Time is of the essence.
Make a list, and check it over at the end of the consultation, to ensure you have covered everything. Ask them to repeat or go over anything you are not sure of. A decent rheumatologist will expect this from you. The most you will be expected to do is be compliant with whatever is prescribeD for you. Obviously, within reason.
Lastly, I would strongly advise bringing a friend or partner. Just as a second set of ears. My hubby was under strict instructions just to listen!.
The first consultation is all important and it will be normal for you to be anxious. In this day & age, the docs know that we have been on the Internet and that they will have to
Manage the knowledge & fears that result from all the information & opinions. I cried at my first meeting with my Consutant, I was in shock when I look back.
I realise now that everything she said then and has said since is true. You must have faith in your consultant, and try not to worry about allthe contra indicitions on med leaflets.
The very best of luck with your appointment,
Gina.
Hi, I type a list of questions I want to ask plus also list what probllems I have been having. I then print out 2 copies - one for the rheumy (consultant or nurse) and one for me. They are quite used to me doing this and if I haven't done 'my notes' they ask me where they are. They have said this helps them, it certainly helps me, I would probably forget most of my questions.
In between visits every now and again I type up what's been happening as by the time I get to see them I will have forgotten a lot (especially if it stops hurting) but could be relevant in the future.
Also, if they prescribe several items which may need to be repeated monthly (I think it was 3 items but may be wong on the number) you can get a pre-payment prescription thingy which covers prescription costs for about 3 months and covers not only meds. for RA but any other meds you may be prescribed. You get a form for this from the chemists.
Best of luck
Judi
Thank you Judi it is all very daunting at the moment. We get free prescriptions in Scotland so that is one good thing. Thank you and take care.
Unfortunately you don't say if your Rheumatology appointment is with a specialist Doctor, routine GP, or specialist nurse. (and a location with facilities dependent on which one you see.)
Wherever you go, and whoever you are seen by, go there with an open mind and answer honestly. Describe your best day and your worst day. What you can do, what you can no longer do. Remember, your brief is to help the Health professional to help you. Forget types of pills, procedures etc. at this stage. We all react differently to treatment. Focus on telling it like it is.
In essence, the Heath Professional may not have an immediate solution, neither might you. Together, though, you may both agree on a solution that is designed specifically for you.
For myself, I am part of a support team that is comprised of me, a GP and supporting staff, a Phlebotomist, a Specialist Nurse, a Rheumatology Consult and Registrar and my local Pharmacy.
Hello...thank you for your reply. I am seeing a consultant tomorrow at the hospital.I have mixed feelings about it all..the doc thinks it is Inflammatory Arthritis so that is why he referred me after 10 weeks of inflammatory blood tests. thank you again.
Hi, I hope everything goes well for you. Do let us know how you get on as I have my first appointment in a couple of weeks time. My wife has managed to get the day off so that she will be coming with me. Generally to make sure I don't forget anything!!
Good Luck.
Richard
Hi. Thank you I will let you know how I get on. My husband is coming with me. I was told to take a urine sample in a clean jar and a list of any medication I am currently taking. I only was referred last week and had an appointment 1 week later. Quite nervous about it all. Good luck too
Good luck for tomorrow, thinking of you.
Paula x
good luck from me too 
Hello everyone. I went to my first clinic today and the consultant was lovely. Asked lots of questions the had to undress so that my feet knees shoulders and hands checked and bent. Was sent for xrays for feet and chest. More blood tests for inflammation markers. Consultant spent time telling me about the condition and the drug that I would get and the side effects. I got a steroid jab on my bum. The nurse, podiatrist and physiotherapist will be part of the team. I felt very looked after and left with lots of things to read. Hope this helps the folks who are going for the first appt. xxx
I was just thinking about you and wondering how it went. It looks like you've had a thorough MOT and hopefully the steroid injection will be a big help. I take it you got a positive diagnosis for RA?
Paula x
Hi Paula. Thank you for asking Yes got a positive diagnosis for RA so getting put on a programme of tablets . Will pick up my prescription on Thursday from the docs and then start taking them. I am on 3 lots..Methotrexate, Sulfasalazine and Hydroxychloroquine. What are you taking? x
Sorry you've had a positive diagnosis but good that you'll now get the help you need. How are you feeling? It'll take you a little time to adjust, I was a bit in shock the first day and then a bit tearful for a week or so. If you need non family support pop a blog on the site or call NRAS, there's always lovely people with helpful words of wisdom. It sounds like your rheumy has been very thorough with both your consultation and your medication. I like is approach of going straight in with a combination of Dmards as this should get your condition under control quickly. At the moment I'm just on mtx. I also had the lovely jab in the bum which helped greatly. I've not suffered any side effects yet to the mtx and gradually stepped up to my current 15mg dose with weekly blood tests. It felt a bit scary starting the mtx as the warning leafet is a bit of a nightmare. Then again we'd never take a paracetamol if we worried too much about the enclosed leaflets. Good luck with your treatment and I hope you feel loads better soon.
Take Care
Paula x
Hi Paula..thank you for your kind words. It is all a bit daunting but the jab on the bum has reduced the swelling already my rings are loose for the first time in weeks. My consultant wanted to treat the condition aggressively to get it under management. One funny thing was I found out that I am double jointed or Hyper-mobility ha ha..did make me laugh.
I will need to chat on here as I don't want to keep going on about it to my friends and family. One friend is brilliant as she has Lupus so we can chat. Are yo still tired? take care x
My daughter in law has hyper mobility and it really is something to see her bend her thumb in totally the wrong direction lol. I find this site is the best for venting my spleen about all things RA related to save boring or worrying my family and friends. With the best will in the world they really don't understand what it is to have the condition. In answer to your question, yes I am still tired. I take my mtx Friday evening and feel pretty lethargic until Tuesday. I'm going to speak to my rheumy nurse at my next consult in June and ask if more folic acid may help as I only take it once a week on a Monday. To be honest though I can cope with tiredness to be rid of the pain. Make sure to blog and let us know how you get on with your treatment. Hoping to hear good things
Paula x
Hi Rockpool,
To echo Paula, I'm also sorry about your positive diagnosis 
Just want to say that I was on the same 3 meds as you all at March 2011, are you in Scotland? I am aware that this aggressive form of treatment is favoured here and from what I've experienced and read this can be a very succesful way of treating RA in the early stages.
I'm glad that I was given all three at once and thankfully very little side effects. My RA is under control and I'm 90% better.
I could go on but will not as you'll be getting your head round it all!
Take care x
Thank you...still a bit shell-shocked at all the information. I am glad to hear that you had not much trouble with the drugs. It will be nice not to have the pain. I am in Scotland and the consultant is specialising in early RA which is great. I will no doubt feel all the info sinking in over the next few weeks. Thank you and take care x
Be advised by what the doctors and health officals tell you and if they give you medication please make sure and take it. Do not take advice from your friends unless they are medically qualified. They might mean well but be weary.
Thank you ..I will do as it is all very new what to expect and what the norm is. My friends were well meaning but as you said..thought they had all the symptoms that I had plus kept saying it was my age !!
Thank you
Wishing you well with your treatment xx
Going to see the Rheumatologist in April can you work taking the methotrexate?
Hi Have you been diagnosed with hypermobility syndrome (genetic faulty collegen) as well? Basically that's Hypermobility with pain & other issues inc OA RA cronic fatigue & but not yet officially in criteria is "ibs" symptoms but you will need to see a specialist g.i. who knows about hms & the linked g.i issues, as not many do. If you haven't already please go to hypermobility.org/help-advi... I am a member. Website is being updated so new info is being added all the time at the moment the rhumy who diagnosed me with hms is the chief med officer (i had to travel to London). They are a great help without the site I would still be looking for answers as to what was wrong. Due to lack of Dr awareness it's badly underdiagnosed, most don't know there can be problems with being "double jointed" & I knew I was that when gp told me as kid, 30 yrs of probs later I finally get a diagnosis. I'm finally seeing a local rhumy in Aug (recommend by the websites local group leader as they know about hms as its usless if they don't know enough). So I want to help spread the word to help others suffering get the right answers. I'm knew to site as found it through your post on googling 1st rhumy appt info! & you happened to be hypermobile!! so don't know if you can send direct message. Gentle hugs x
Bit late in the day, but how are the meds going? I've got my first appointment with the specialist in a few hours. At 41 years old I'm a little nervous about my working life
What would you do? I am in desperate need of your opinion. 
