Hi Agnes,

notebook sounds v good idea,
i would write down any pointers you mentioned above just to make the most of the appointment
we are all different - i like to know EVERYthing, here's just a few suggestions for discussion from me:

Meds - i like to know pros and cons - risks vs benefits, potential side effects & do not hesitate to ask for written info if you wish,

Physio / OT - ask for referral and to podiatrist too - all essential for managing, and as soon as poss!!

Are there any support groups available nearby?

Mnanagement of a flare - advice / prevention of joint damage, tips / support - managing pain, tiredness

Aids, adjustments (this is where OT / physio referral & support is invaluable)

Exercise - what to do, what not to do...

Info re: assessment of disease activity / xray results, blood tests, life plans vs med treatments,

Next appointment likely date & timescale,

telephone helpline number / named contact for any questions in the meantime,

Let us know how you get on, take care love Liz xx

You will need to ask about a Rheumatologist Nurse too-is there one working with the Rheummy team etc

Thank you for all your replies. I am writing them down now. I'll let you know how I get on.

Hi nice meet
you
Good diea 2nd opionion always seems shed different light on things
I took MTX 2 years ive now stopped due to start ttcc 9 months usally 6 months but i have sle lupus and its not yet under control so bit longer.
if want try in next year say best tell them and they give you safe ttc drug.
im on this its planequil i have mdoerate R and mild lse it wokrs on both i also have steriods by injection to reduce thigns further thus aiming to stop flares in discease actvitiy.

rest im afraid carnt help but see you got ltos info abaove.


they should ask re ttcc or not did for me,
wish you very best.

im in london go to a special RA clinic that alsotreats my lupus,fibro etc.
for 1st visit one goes general rheumatolgoy and assesed from there.


rheumy speiclaist nurses are so good,good knowledge of medication etc.
and some even run pre during and after pregancy clinica.

take care.
melly

Update from me. I went to see consultant number two at the hospital in North London on Weds. Turns out he trained under consultant number 1 years ago and then went on to tell me how great and wonderful consultant no 1 is and he very much doubted he would come up with a different diganosis to that of consultant no 1. The up shot is my RA has been confirmed based on history and quick examination of the joints. My RF factor was 156 at the last count but more bloods were taken on Weds.

I have to make up my mind which route I go re the meds. I can start on MTX, or go on the MTX/Enbrel trial or go on hydroxycloroquine if I decide I want to go ahead and TCC this year. The doc said I should try to get the RA under control before starting TCC but I threw a bit of a wobbly and reminded him I am 40 with 2 failed IVFs under my belt so what should I do.........

I still haven't managed to see the results of my hands, chest and feet x ray. My GP does not have a copy of them from the hospital and the second consultant decided not to bother to take new X-rays since I had already been subjected to x rays 4 week's ago.

So I will stick with my original hospital since it is much nearer and easier to manage getting bloods etc. My RA is active at the mo mainly in my wrists, hands, shoulders and I have a permanent sore throat . I am supposed to be writing a 3000 word essay for my course this week. I am not sure how I am going to do that. Perhaps I will try to do a few words followed by lots of breaks in between.

How bad do my hands/wrists need to be before I should ask for a referral to an OT? They are functional. I can still open jars, clean my teeth and get dressed my self but my fingers are swollen and movement in my wrists is restricted. Stretching for objects is a struggle but I can do it. This is all new to me and I don't know when I should be making a fuss or when I should just put up and get on with things.

Bye for now. I'm off out to enjoy the sunshine

Hi Agnes

I think I might be feeling fairly outraged if I was in your shoes! That said I don't often get mad but the way you have been treated thus far is to me not in your best interests at all.

I don't give a monkey how well regarded either/both these chaps are, at the end of the day you are a 40 year old woman who at some point in the very near future would like a child. Consultant number one, in my opinion, made a snap diagnosis on the chance he might be able to get you onto his research trial (for his benefit not yours), consultant number two, aware of the the previous diagnosis, is not going to approach your examination subjectively knowing the diagnosis was made by someone he respects. These guys so stick together.

Basically whatever treatment plan they come up with it could take a while for it all to settle down and show improvement or not. Meanwhile the clock ticks putting you under unnecessary stress. If you take Methotrexate you cannot try to conceive whilst taking it and for up to 6 months after. Research trials tend to last for a minimum of two/three years (mine was 5 years but that was a while ago) during which time you will be required to follow their guidelines and have whatever tests and follow up they require under the agreement. It will almost certainly not allow you to try to conceive. Really it comes down to what is most important to you at this point in time. If it was me, with the benefit of hindsight, I would not go on the trial or take Mtx. There's no guarantee of success anyway and I would go with the less invasive option of hydroxy. It has a very good success rate and may be all you need to control your current problems. If you do become pregnant you will likely find that the RA symptoms disappear or become easier for the duration. After the birth who knows? Change of hormonal function etc. has different effects in different people but something for the future. Only you can decide what your priorities are but bear in mind some consultants sometimes have other objectives in mind!

Your GP should be able to refer you to an OT. As Doreen suggests early referral can preserve hand function. Resting splints worn at night can be particularly useful and give you better wrist/hand movement throughout the day. Definitely worth following up. Also worthy of consideration is a paraffin wax bath for your hands. It can be used daily and is very therapeutic. Amazon and Argos sell them.

Good luck with your essay; hope you get through it okay! Make the most of the sunshine (you can't do that on methotrexate!!!),

Lyn x

i am luckey that now i have some of my apopments with a second person presant .
They are very though when you have two going though your notes and asking questions and speaking with each other and see ing where to go next .
yes its good to have a sconds persons opion
The worst is the dx they testing me for .But still alive and kicking .I did not have the last thing they tested for
i found out loads of things by having a dermolist and Rhumolist togetor .I Laugh they know more about me then i do ..ekk .

Christine