how often to see rhumy?

kezzo1

i only see rhumy nurse every 6 weeks and consultant 2/3 times a year 6 months in between app how often does everyone see rhumy? just woundered, or do u all ring up for adivce/ blood updates etc?

wallysatt

I think seeing your nurse ever 6 weeks is pretty good because at least they are checking you over and if there are any problems they can probably get you into see the dr.

kezzo1

i wish she did check me over she doesnt and she doesnt ask how i am or haow im feeling just goes straight off my blood results and i have to ask her to fill in my book coz i like to keep track on how im doing too.
feel like my hands and wrists are getting worse ive made a list to discuss with consultant in jan so i get everything in!!

wallysatt

I usually make a list for when I see my Rheumatologist, it just makes it so much easier because you always come out and realize you've forgotten to ask something.

At the moment I'm in the process of deciding if I want to have my hip resurfaced, the surgeon has given me 8 weeks to decide. My mum said to make a note everyday of when it hurts and what other joints are bothering me that day, so at the end I can tell how much my hip is bothering me and base my decision around that.

Do you have splints for your wrists?

paddythedaddy

I've never seen a rheumy nurse. To be honest, I didn't know rheumy nurses existed before I joined this forum a few weeks ago. What do they do and where can I find one?

kezzo1

to wallysatt- yes i have working splints but im seeinf occ health thurs for some support ones i can wear when typing etc and that dont have metal in.

to paddy- rhymy nurses are at the hospital ususally ur gp refers u to see one.

paddythedaddy

Thanks kezzo. I can see I'll have to ask my GP and/or rheumatologist about the rheumy nurse, as neither has mentioned it before.

kezzo1

there useless hay! what sort of arthritis do u have then? was it diagnosed? that could be why u havnt been refered?

paddythedaddy

I have rheumatoid arthritis. Yes, it's been diagnosed. The GP referred me to the rheumatologist (who diagnosed it) over two years ago but I suspect it's been hanging around a bit longer than that. I see the rheumatologist maybe three or four times a year now. Next appointment is in Feb.

frogmorton

Hi Kezzo
Hope you are ok?
I go to see mine on Tuesday! Yipee?
I go to Newcross - you?
Real answer is about 6 monthly.
Take care
Toni xx

luckybug

not often enough, my appointments are always being cancelled and there is a big lack of rheumatologists in Blackpool. Good job I can contact Rheumy nurse. xx

ichabod6

I use Blackpool NHS Trust. I see the rheumatologist
2 or 3 times a year by pre-arranged appointment.and the
rheumatology practice nurse once a year by appointment.
I can also contact her by phone or email whenever I need
to. I emailed her at 10-30pm last night and a reply was in
my inbox when I logged on this pm.
This has been the system for about 7 years now and so
far it has served me well.

jimmy77

kezzo1 wrote:

i only see rhumy nurse every 6 weeks and consultant 2/3 times a year 6 months in between app how often does everyone see rhumy? just woundered, or do u all ring up for adivce/ blood updates etc?

rought them into the

Hi,

I see my rheumy only when flairs happen and injections are needed otherwise they are of no use to me. After 20 years of seeing Rheumies, I think they they must wonder why they got into the occupation, that has made minimal new progress in treating the disease. For those that get some type of psycholgical benefit from the visit they should do it as long as it makes them feel better.

jimmy77

livinglegend

I see my local GP's Practice Nurse every 4 weeks for blood tests and rheumy once a year. But I have a phone number for the Rheumatology Centre and can speak to a specialist Rheumatology Nurse for good advice straight away.

Testwise, I have just completed a 3 year trial with Manchester University looking for a cure or at least to ease the symptoms. :shock: I note that the University of Leeds and Swansea University are both looking for volunteers on this forum. So, if anyone complains about no cure, volunteer and help to find one. :?

Joseph 8)

sweenyuk

I went to see mine in Aug, he decided from my latest scan I needed surgery, so discharged me from his clinic and refered me to a surgeon. Went to see the surgeon last week, who said my bottom 3 discs in spine are badly damaged with wear and tear and my nerves are exposed due to lack of flluid protecting them, but an operation would not cure either issue, so also discharged me... I do see the pain clinic twice a year, but that is just to get more ketamine for pain relief as it is not yet licensed for GP's to prescribe...

colinb

here, it is six montly rheumy appointment, but new changes mean a 3 monthly appointment with the rheumy nurses at the clinic. all rheumy ever does is look at my wife and say..ohh..not much swelling is there?to which she of course replies..yes..but what about all the stiffness, pain etc etc

scattered

It depends how active my RA is and whether I've had any problems. When my RA is active it is anywhere from monthly to 3 monthly. When it is controlled I see my RD every months. Every time I go I see the rheumy nurse first and she is my first point of contact on the helpline. I can speak to a nurse at anytime. My GP will also send letters or ring if he feels I need to be seen between prearranged appointments and then the hospital decide, based on consultation with my GP if I need to be seen. If the decide I do, I get an appointment in the emergency clinic.

colinb

does anyone know if there is a set standard of treatment which people should be able to access at their rheumy clinic as a minimum?or does it all, as i suspect, just vary by health trust areas.ie the old postcode lottery healthcare provision?