Does anyone else feel nervous about seeing their rheumatologist?

I really can't talk to mine and find him quite dismissive. He is the type that looks at your latest blood test and if that's not bad - you're out of there in 30 seconds.

I haven't seen him for nearly a year and he doesn't know I was put on Humira. He just kept upping the MTX and said he was going to put it up to 30 mg per week if the 25 didn't work. When I went for physio though and was still in a 'flare' on the 6th week I saw them, they called a doctor from the Rheumy ward at the Hallmashire in Sheffield and she did my first anti-tnf assessment there and then. The nurses did the follow up assessment and I started Humira in Novemer. I am kind of scared that as I haven't had a massively positive improvement, he will try to chuck me off it tomorrow.

Am dreading it.

Julie x

Hello Julie

I agree with what you are saying that the Specialist have you in and out and that we
are not given the time which we should be. I think they are soo FULL and this is the
reason.

Do yourself a 'pointer' list it may help you to say everything you want to discuss, I
did this last time and it was quite useful.

Good luck and let us know how you get on


Rose

Can't remember Julie, it's 3 years since I saw a consultant and I don't even have one now!

Good luck with seeing yours tomorow.
It will be in your notes that you are on humira so he should know you are on it!
Let us know how you get on.

Love, Doreen xx

Julie- when you go in just think of this and remember he is an ordinary human being !

Hi Julie,
The whole medical profession make me nervous and I've spent most of my life trying to avoid them! So my tactic is, make a list and don't leave until you've got to the end. Its your appoinment not his, you're in control not him, go girl, go! I think I've borrowed Lyn's red boots. Good luck, let us know how you get on.
Sara
x

It's a good job I have you to make me laugh. What are you going to do now Doreen. I knew your rheummy dept had closed but who is prescribing your drugs and checking up on you?

Appointment went pretty much as expected. He looked at last blood tests and said inflammation has settled nicely. I said I knew that it was going down but I was concerned as my right hip has been extremely painful. He ignored this comment and went to my x-rays I had done over 12 months ago . He said that my hands showed very little damage and the damage in my feet did not appear to have increased since the year before. He was just about to try to fob me off there but I mentioned that I noticed that the rheummy nurse I saw 3 months ago had recommended new x-rays. He said I would get some today. He then looked at my hands and said they looked fine and that you wouldn't know that I have RA. Then did some rather painful prodding and poking. What he doesn't know is that my fingers are massive compared to how they were 4 yrs ago. I'm assuming that he considers one thumb being nearly twice the size of the other is normal. He then commented on the lump on the back of my hand and I said it doesn't look spectacular today but it really swells and get quite large and it feels like I have toothache in the tendons. He said he thought it was the tendon sheath - 'as it's made from the same stuff that surrounds your bones'. No advice on how I can prevent this or whether I should rest the hand when it happens. No answer about hip, no examination. No invitation back to clinic to review x-rays of hands and feet.

He then told me that I am on the 'gold standard' of treatment (as if there is nothing else) and made me feel as though I should be truly grateful to him and doff my cap or something. He proceeded to try to pass the buck back to my GP for everything and I told him that the rheummy nurse has booked and appointment for me in June as last time she did my DAS score it was high and my blood results were fluctuating. He agreed that I could keep this appointment and that I should stick with Humira. Bye for 6 months.

Up until just over a week ago when the weather started getting better, I was in a real tangle and was slipping back into deep depression. Now I've seen him - he makes me think I'm making it all up

Thank goodness I still have the appointment with my lovely nurse in June. She clearly knows what he is like and when I told her he doesn't listen to me, that's when she decided to book me back in with her in advance. Her advice was that I shouldn't have been struggling like I was and maybe I should consider changing Anti-tnfs. At least I am not at a dead end like some people are.

Sorry for ranting but I don't bother telling anyone else this as they just don't understand. There - feel better for getting this off my chest already!

Julie xx

POSTED THREE TIMES ACTUALLY, NOT JUST THE TWICE!

Sorry, posted twice - must've been the thought of Dor's tassels!!

Hi Julie

Now I've calmed down from your ordeal I can perhaps reply! Well, what a waste of your time that appointment was and what a waste of space that ignorant rheumatologist is! They make me really cross these stupid people, do they not realise their ineptitude is at the very core of poor rheumatology practice? We all know what they should be doing, a thorough examination, a face to face conversation about our pain, fatigue, swelling etc, a show of concern for our needs. But what do they do, ask uneventful questions, prod and poke achieving nothing, look at material that is eons out of date and generally provide answers that are glib and inadequate! Can you tell this is a route well travelled?

Is this rheumatologist about to retire by any chance? He hardly seems to be at the cutting edge! Thank goodness you have a decent nurse with a good grounding in common sense as well as rheumatology. But you do need to think where to go from here. You are entitled to a much better service than you are getting although a big plus for the nurse.

I have a lump on the back of my hand; I was told it was synovial fluid! It gets bigger as the RA gets worse, nice Oh well, it can't cause too many problems on the back of a hand ... it could be the sole of the foot!!!

Cheer up Julie we have plans to make for 'The Wedding' which is only a few weeks away. RA has to take a back seat whilst we get organised. I think if I were to trim your tassels with my scissors ... just 'til you get the hang of it ......

Lyn xx

Hi Julie
Unfortunately at consultant level these medical professionals would appear to be accountable to no-one. It is inexcusable that they are so disorganised at your precious appointment and we don't like to complain about their manner directly to them for fear of it compromising our treatment and even if the nurses have heard it many times before there is little they can do. A friend of mine worked at BP in a managerial position and they had a a system of "reporting up" ie the minions were able to input into their bosses' staff reports. They may have reached the heady levels of consultancy but that doesn't mean they still don't have a thing or two to learn and the people "underneath" them, you and me, can teach them, the problem is finding a way to do this without upsetting the apple cart. Regarding your feeling nervous - bear in mind that he is your servant.
....eve xx