Follow up appointment

resusjan

Hi everyone,

I've got my first follow up appointment with my rheumatologist since being diagnosed with RA and started on methorexate.

I'm quite nervous about it as I'm not sure what to expect. I suppose she'll want to know if the treatment is working - well, no, not really but I always end up doing the typical stiff upper lip and saying everythings fine when anyone asks me.

Do you think she'll want me to list ALL my ongoing aches and pains or will I come across as a whinging git if I do that. Its a shame we cant just pop in and see them when we are actually in pain as I know that, if I'm not actually feeling it at the time, I'll forget to mention the pains in my fingers, wrists, shoulders, toes and ribs. I'll probably forget to mention the occasional breathlessness too.

Maybe I should just write a list.

Anyway, thanks for listening

Jan

Ankyspond

Tell them it all in all its glory, you need to let them know how it affects you. If there is one place you need to drop your mask its at the hospital I blubbered my way through a nurse appointment today and I know I will with the consultant in few weeks. I suggest writing it all down, questions how you feeling etc, I have done a pain map which I used today and I have been sharing with others if you would like a copy then PM me with an address to send it to. Check it out on the link below. xxx

http://www.arthritiscare.org.uk/forums/living-with-arthritis-forum-f8/happy-to-share-body-pain-map-and-safe-emails-x-t26288.html

resusjan

Thank you Anky,

I think I have read about your pain map on some of the other forum topics, yes please - I'd love to use it too if you really don't mind.

Don't want to sound thick - but how do you pm on here - I haven't been using this site very long so still getting used to it.

I'll try and compile a list of questions and write down how I have been feeling so I don't forget when I'm in there. I'm just not really sure what to expect as its the first appointment since starting treatment but I have met the rheumatologist before and she seemed nice. I just hope I see the same one again.

Thanks for your advise, much appreciated
Jan

Ankyspond

Under my post there is a little button with PM on it, click on that and it will let you send me a personal message (email). Just send me an email address that can accept attachments hotmail, yahoo, gmail etc and I will send you everything you need.

As for the appointment if younhave any questions write them down. They will just ask you how you feeling if meds working etc just be honest and open and relax you are not in trial they are there to help you. It may be a different one or it may be a nurse but they will all know what they are talking about. Just. Go with an open mind and any questions and your pain map completed and they should pick up whats happening by that. Xx

Ankyspond

Right under my signature is the button. X

skezier

Hi Jan,

I think maybe a lit is a good idea.... you have to be honest with them flower cus if its not working they could adjust the does or add something in for you.

Fingers crossed through it will be a good appointment though.

When is it Jan cus we do the half decent pocket duties. Cris x

resusjan

THanks for the messages everyone.

The appointment is tomorrow at 9.20am. I've had a particularly bad day today so have made notes of what hurts etc.

Will let you all know how it goes

Thanks Again
Jan

mig

The pain map is really good,i have done several and dated them, i fill them in when any thing new hits.good luck for tomorrow.Mig

ironic

Hi Jan,
Good grief, you are not moaning at all, to be honest the more you can tell them the better it is for them to decide what direction to go. So please don’t be backwards coming forward with her.

Good luck with your appointment, I will be thinking of you.
Lv, I x

dreamdaisy

The very best of luck with today, resusjan. Always make a list, even keep a diary of what is what: the more information you can give them the more they can understand about how YOU are being affected. It's not whinging, it's information. Please let is know how you get on, yes? DD

resusjan

Thanks everyone for your advise and good wishes for my appointment today.

I saw a different rheumatologist from last time, but he was lovely. He really wanted to know how I was feeling and I didn't feel at all rushed.

He said my disease activity score is quite high so added in sulfasazide (or whatever its called) to my methotrexate and planequil. I've got to take all of them for another 2 months and if no improvement they will consider anti-TNF (not too sure what that is either but will look it up).

He also said my B12 was low so that is probably why I'm feeling totally knackered - they took some more blood tests so will see the results of that.

I've got to go back to see him in 8 weeks and also go to my GP for blood results this week.

So, all in all, even though the news wasn't fab and I have got to take even more tablets - it was a positive appointment as they are taking things seriously and seem to have a back up plan already in mind.

Thanks so much everyone
Jan xx