Questions for a first ever rheumatology appointment on Friday morning?

I've finally got my rheumatology appointment on Friday in our local hospital. I haven't even been formally diagnosed yet of course, but does anyone have advice for me about essential questions and things I should listen out especially hard for? I'm very nervous that it will be a big let down and I won't like him - also that he might assume I'm coming from a position of ignorance when in fact I've done a lot of research over the past three months while while waiting in this horrible limbo! I don't know how - knowledgeable I should appear and I really don't want to get off to a bad start with him but equally the thought of having to sit through this much waited for appointment while he starts me off at square one and assumes I know nothing would feel like a terrible waste of time?

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And I have remembered that someone suggested that I get phone number of department and rheumatology nurses off him - thanks got that down on my question sheet! Also is an ESR reading of 56 quite high or just a bit elevated?- I believe that they can run from 0-150 or more so is this actually quite a low first ESR for someone with suspected RA?

[Hidden]

nras do some good publications.. mention level of pain . loss of movement.. etc.. ask about pain killers, dmards, steroids etc.. ie find out about drug treatment options!!.ask about occupational therapy. physio therapy(some hosp operate self referrals.. dont know about yours?.. so ask the question.. also would you benefit from/ need hydrotherapy.. have you a diagnosis??> ,If not ask for one etc,,,..

[helixhelix]

In hindsight the most useful question I asked at my first appointment was to ask about her approach to treating RA. She then told me what she would propose as first step & then how she would proceed after if necessary. Made me feel there was a grand plan (good for my confidence in her), and gave me opportunity to ask how I'd know if it wasn't working and who I should call (which really helped over next weeks). Also meant I could ask how I could help myself to get best possible chance of it working, which was useful in getting her views as to what was important (no alcohol more important than loosing weight to start with) but was also a good start in building some form of relationship between us.

[Hidden in reply to helixhelix]

Thanks that's really helpful. It will be interesting to hear this man's approach to treating RA early on in our meeting I think. My GP seemed pleased when I told him the name of the consultant I'm getting on Friday - said he's a friendly man and thorough. I'm a bit baffled by the no alcohol over losing weight advice as I have always expected the two to go hand in hand really. But then I've never been much of a drinker and am totally focused on trying to lose weight because that is definitely something I can do for myself. I was really very overweight indeed a few months ago but getting closer to normal for my height and build now I think. But I concede that I've never craved alcohol as much I have since RA first reared its head either!

I think I'm probably going to be quite disadvantaged by the lack of provision up here where hydrotherapy and other physio treatments are concerned. I don't think he'll probably even know what is or isn't available up here because he's coming from the mainland hospital in Aberdeen. But I suppose I can ask in the hospital or maybe the physio will be part of the consultation? Here we only have more than a small hospital with no dedicated rheumatology nurses or specialist team - but I am hoping I will get a phone number to be able to make contact with these people whenever I need advice. My GP friend tells me that anti tnf treatment is always administered off island but I don't suppose I'll qualify for that - not initially anyway.

[helixhelix in reply to Hidden]

I don't think she was saying either weight or alcohol - more that she was acknowledging that having RA is bad enough and takes a while to come to terms with, so don't try to do everything else all at once and beat yourself up if you can't manage it all. I didn't drink much, but it's odd how you want things when you can't have them.... (some people do have a bit with MTX, but I don't)

We don't really have any physio/hydro where I am (poor bit of London). I guess it depends on how bad you are, but I've found that following the exercise in the arthritis & exercise book has been ok for me. I think you'll have to gauge what's the most important to push for - so don't forget to think about your feet as podiatrist could be something you want to ask about as well if your feet are bad. But the most, most important is having phone number of someone to call if you have a problem. Do try to see if there is a specialist rheumy nurse you can be linked with, and try to get the consultant's secretary's number too. I've been very lucky with my consultant as she's prepared to talk on the phone - some won't. Good luck, Polly

[eve5]

Hi Tilda

I found it quite difficult on a visit to my gp recently to get into the conversation that I have, in fact, learnt a lot about RA since diagnosis a year ago, it would almost have seemed rude to tell him so as he was going over the basics with me. I guess the only way round it at your appointment would be to start off by saying that although you've not had a diagnosis yet you have been familiarising yourself with the terminology of tests, drugs etc and this is what you understand RA to be and what you really need from him is to analyse your personal results and experience and come up with an initial plan of treatment.

As for whether you will like him or not, I think anyone, doctor, dentist etc who is telling us something negative we're not going to like them as much as someone who gives us a clean bill of health. I see a necessity for a certain amount of self-managment with RA and I think you will become very aware of changes in your body and this website and the nras forum support this hunger for learning about the new us, why things are occurring and what we might expect in the future in terms of treatment and support but it also involves teamwork working with your rheumie. I do hope he doesn't disappoint you. Go along with your notebook, pencil and someone else who can hopefully pick up the parts you miss.

I hope it goes well.

.....eve xx

[sylvi]

Tilda, Have you a recording facility on your phone, if so record all what they say and then you can go back and hear everything they said. Also start writng anything that you think you want to know and take that with you as well.

Hope you get on ok. Sylvia.

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Thanks very much for your advice Polly, Eve and Sylvia (three of my favourite names!). I asked my GP for advice on whether to take a close friend, who will be driving to the hospital with me, into the consultation to do just as you mention Eve. My husband will be sleeping off a night shift and the appointment is for early on Friday morning and my friend suggested that she come in and act as back up with notes etc.

My GP thought hard about this and then told me he thought on balance I should go in on my own this time. His reasoning was that, although he knows the friend (also his patient) and knows she would be excellent choice, he thinks that it may alter the dynamic of this first meeting with consultant - which is going to be pretty important for me. He advised (since I was asking him) that having a third party might compromise both consultant and myself in building up initial trust. I pointed out that I might be in such a raffle that i might miss things and he said I should write down the questions I want to ask and then come back and see him (GP) when the consultant has written to him. He told me that this particular consultant usually writes within a week and is very clear and full about how the consultation went, so if I have forgotten stuff or not taken it all in then my GP should be able to fill me in later. I think he's probably right in his advice so am going with that.

I think it might be the same thing with leaving my phone on record Sylvia - feel a bit awkward about that and my phone is very heavily used so will keep buzzing all the way through - which will make me even more jumpy, but thanks for the suggestion - I may well try it on subsequent visits!

Thanks Eve for understanding my worries about appearing over informed to this man. My GP knows I've been doing a lot of research and is pleased about that but I don't want the consultant to think I'm a bit obsessed (although I am!) so I will do as you suggest and let him know that I've filled myself in on the basics, terms etc so he hopefuly doesn't waste my time or his on explaining stuff I already know.

Cheers to you all - I'm very nervous and excited to be this close to seeing a specialist at last!

Tilda

[Ailsa-NRAS Partner NRAS]

Ask our helpline for a copy of RAise it with your Doctor - if we post it today you should get it by Friday. I think that's one publication that you can't download from our site. Good luck.

Ailsa

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Thanks Alisa - the helpline have been extremely good at advising me a couple of times already so I'll email them right away and request they send it asap. I doubt it will reach Orkney by 8am on Friday - but worth a shot at least!

Matilda

[Sheila_G]

Hi Tilda - I found my first appointment to be very useful and informative. I wasn't rushed and had plenty of time to ask questions. All the staff were wonderful. One thing I would suggest is writing down everything that comes to mind. It doesn't matter how silly it sounds to you, they will have heard it all before and will answer all your questions. I always come out of appointments thinking I should have said this or that. If it's written down you can't forget. Good luck

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Hi Sheila, I'm typing my questions down now while all these helpful suggestions are in front of me- many thanks! Tilda

[Hidden]

Hi Tilda,

I have a feeling that we may be under the same RA nurse as she mentioned travelling to the outer hebrides, if so, she has always been very quick at returning calls and has been very supportive, I only met her for the first time this week (went for my first Anti-tnf! )

As for the Occupational and Physio Nurses, again they are both based at the Rhuematology unit in Dingwall and may be your nearest contact, if so they are fantastic also....

I did ask about a anti-tnf at my first visit but had to fail 3 DMARDs first, which I have but was put on 3 at once to start with using what they call the 'step down method' method, giving you all 3 at once then if they work then gradually cutting down whereas in England I believe they tend to use the 'step up' starting with one then adding (sorry if you knew this already) I really hated taking so many tablets at first but to be truthful I'm glad that I have been treated this way as now without any delay I am starting Enbrel before any permanent damage occurs.

Hope all goes well

[Hidden]

Hi Wiliby,

Unfortunately I don't think I will be under the same healthcare team as you are, living near Nairn as you do. Orkney (North Isles rather than Hebrides) is under Grampian health authority which means it is tied in with is Aberdeen's Forester Hill hospital rather than your closest one which would be the Raigmore Hospital I guess? There is a physio department and there are occupational therapists here at the Balfour Hospital in Kirkwall but no one with expert knowledge of rheumatology - they are all based in Aberdeen from where the consultant will be coming up from tomorrow.

My GP explained a while ago that NHS Orkney would never pay for patients here to go outwith this health authority if there is the specialist treatment available in Aberdeen. Aberdeen is the largest hospital in Scotland I believe? I am a bit familiar with it because I did a big commission creating artwork for the children's hospital there a few years ago. But I'm told that the rheumatology nurses in Aberdeen are excellent too so let's hope it works out as well as what you are receiving in the Highlands. And yes I had heard that about the step down method as opposed to the English step up method. I'm really dreading that side of things to be honest, having had a bad experience already with Sulfasalazine which I had to come off, but I'm sure you are right that it's all for the best. I'm still under the influence of the steroid, Kenalog, so I've only experienced some hand pain for the past five weeks, but inflammation is creeping back into feet now so I will certainly add a podiatrist into one of the questions! Many thanks for all your advice and good wishes. Tilda

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I just wanted to thank you Alisa because my copy of RAise it with your doctor has just arrived in the post. This was very quick indeed and gives me time to read up prior first rheumie visit early tomorrow. I'm meant to be in my studio finishing work for three deadlines next week but I just can't concentrate so this RA reading will have to take priority!

Tilda

[Hidden]

A quick update for those here who have advised me. I had first apt with consultant this morning. He seemed pretty on the ball although not a great listener and quite impatient. He told me that it's very inconclusive - which has to be a very good thing really although too tired to feel the relief yet. He said it could be slow onset of RA but equally could be something else such as post viral arthritis because none of blood results would indicate RA conclusively (positive Rheumatoid Factor is no real indicator of anything with RA). As there is no visible swelling or damage to joints for him to look at as yet he just can't tell. My finger nodules he was a bit dismissive of because he felt that sometimes hands do change shape and become gnarled and blemished from wear and tear or other arthritic conditions overnight. I suppose I'm much more aware of them from knowing my hands intimately but not of much interest to him he said - he hardly even looked at them although he did prod, poke and bend all my joints. He also pointed out that many strange things, including RA, can happen after the menopause because of influx of new hormones etc.

He looked a bit blank when I asked him about his approach to treating RA and he also told me there are almost no specialist rheumatoid nurses in Aberdeen and no support team for me there so my GP and the physio woman who sat in on consultation (not rheumatoid trained) would be my only support if I do in fact turn out to have it. So I'll just have to hope, hope, hope that I don't!

He said that the lack of any visible signs made it less likely on one hand but then he was aware that I have been on steroid which could still be masking the symptoms still so again not clear. He got the nurse to run an anti-CCP test, which I guess will be fairly conclusive from what I've read on this site to date, and I was also given a chest x-ray re Methotrexate? He asked me lots of questions and didn't seem too interested much in hearing my questions to be honest but then he's a busy guy. He did say that he would see me again when he's next up in November and if I had any flare up in the meantime then I should go to my GP and show the physio who was with us in the room and they would contact him because he needs me in full flare mode before he can treat me. Now desperately hoping it will all vanish from wherever it came and if so you'll hear from me no more.

My sister in law is staying and has decided the whole thing is psychological because I lost my dad then my mum and my best friend's son all suddenly and out of the blue over quite a short time period within of a few years. I'm not ruling this out as a possibility at all.

Anyway thanks a million all of you you are an amazingly courageous lot!

Cheers, Tilda