Rheumatology nurse

bailey27

Hi
I have a Rheumtology nurse appointment coming up.
What is their role? I had one last year but after 2 minutes she called in consultant so didnt really get to experience what she does.
Can she prescribe new meds? mine dont seem to be working at the moment, dont see the point in pumping body full of these poisenous drugs if i continue to feel like this.

tillytop

Hi Bailey

The rheumatology specialist nurses hopefully have lots of experience specific to rheumatology and, if you get a good one, it could be a valuable opportunity for you to discuss your current health and drug options because they tend to have more time than the consultants I find.

At the clinic I go to, the nurses often run the clinics and make recommendations to the consultants on the drugs side of things. So they would decide what they think and get the sign off from the consultant. That said, in terms of a full review, which is what it sounds as if you are hoping for, an appt with a consultant might be your best option but this may be something the nurse can arrange for you when you go.

Sorry your meds aren't working at the moment Bailey and hopefully the rheumatology nurse appt isn't too far away?

Love Tilly xxx

dreamdaisy

Mine are exactly the same as tilly's. They do aspirations, check ups, DAS tests, talk thro meds, make recommendations and are often a good liaison between the consultant and me. They also run the helpline, which one can ring when an emergency occurs (as long as it's between the hours of 9 and 5, so much more convenient for everyone!) DD

bailey27

sorry, may sound daft but what are aspirations?
If i dont get a change in meds in december what owould they most likely do? It will be 13 months since i started on the sulphasalazine. Is this a long time to change or would i have to be on them longer?
I am coming off prednisalone at the moment and having a rough time of it. I am determined to stick with it though because the rheumatologist said that he wouldnt even consider changing my meds if i was still on the prednisalone. I am hoping going through this i will get a different med to try and things may look up from there.

dreamdaisy

Aspiration is the method by which they extract fluid from the joint/s. As for the rest of your post I won't reply as life currently sucks and I cannot give an even view on it all. I am sorry. :oops: DD

tillytop

Hi Bailey

DD has answered the aspiration bit so I’ll have a go at the rest.

In terms of meds and timescales, it’s one of those things
which “just depends”. I know that doesn’t sound very helpful but it is, for me, one of the most frustrating things about arthritis. In my experience it is always a bit of a roller coaster ride, finding a good balance of meds and, because the arthritis is not static, even when you find things which work, they don’t necessary work for always.

In terms of the Sulpha, I would expect that, if you were going to get some benefit from it, you would have done so before now, but often Sulpha is prescribed alongside other meds so it may be that your consultant decides to add something else, rather than you stopping the Sulpha altogether.

Re the pred – I really do feel for you Bailey because I too I trying and struggling to reduce my pred dose at the moment. Although it can be a “wonder drug” in terms of sitting on the arthritis, the docs don’t like you to be on it longer term at high doses because of potential long-term side effects. I am, however, sorry that your doc won’t even consider giving you other meds whilst you are still on the pred. I would have thought that a better approach would be to give you another med so that you can comfortably reduce the pred once the new one starts to take effect (this is a discussion I am about to have with my rheumatologist). What pred dose are you currently taking?

Given how much you are struggling, would it be worth sticking at your current pred dose until you see the rheumatology nurse and asking for her advice? Is December your consultant appt or is this how long you have to wait to see the nurse? Hopefully your nurse appt is sooner than that?

Love Tilly xxx

frogmorton

I think the nurse appt is sooner Tilly if I read it right.

Maybe she will be able to liase with the rheumy for you so he/she knosw things are not too brilliant for you at the mo Bailey?

I hope it is soon so you can get some answers - I always feel better if I have a plan.

Good luck with the pred

Love

Toni xx

barbara12

Hi Bailey
Sorry I cant add anything, just want to say good luck with everything.
Love
Barbara xx

bailey27

Hi
My appoitment in december is with the rheumatology nurse. i dont have a follow up with consultant at the moment. Even though i have been under the department for a year i am still trying to grasp what everything means and what people do.
I am currently on 3mg + 4mg alternating days. I was on 25mg for a while last year and reduced to about 10-15mg then stuck at that and the last 3-4 months been cutting down each week by 1 mg alternating between days, which i was advised would be easier.
To be honest, I dont feel any better now than I did a few yars ago when i started getting problemsso really cant see any benefit in taking these tablets anymore.

dreamdaisy

That is a tiny dose of steroids bailey (well, it is in my book) which is probably why you aren't feeling so good. I gave in today (I can't help myself, that is just how it feels) and went back up to 20. This will be a holding dose until Friday, then 17.5 for a few days, then 15 and there I shall stay for the foreseeable future. I cannot express the disappointment I feel about this: my consultant promised me a reduction in meds when the humira kicked in. I (foolishly) lost my usual disbelief and found myself hoping for just such a thing. Twerp. (me, not you!) I now know that it is not to be, and that despite the humira, meth, naproxen and sulphasalazine, I still need the blinking pred to function. Well, define function! Your rheumatologist is so unkind to deny you any further treatment until you are off pred. God, these docs love the theory - they should damn well try living with the reality. Oooops. What did I say about balanced? I sense I am not quite there yet, and I shall leave you with this thought: you need to do what is right for you, not what is right for them. DD

bailey27

Hi
thanks,. When i went to my GP last week he suggested i go up to 10mg and try to come off them slowly again but it is my rheumatologist who said he desnt want me on them when i see him next, or to at aleast try not to be. i wnt to show willing so he may be a big more supportive.
I agree, sometimes I wish in a weird kind of way that Drs are made to got rhough what we go through everyday of our lives for just a few hours. Maybe they would understand a bit better.

dreamdaisy

It was my consultant who put me on them in the first place. She said they would help, and I would be on them for a limited time, and that was Feb 2007. I have to do what I have to do. She has done all she can, it's not wonderful, so I am still on pred. There is no other choice. Doctors vary so widely in what they advise, it does sometimes make things so much more, and un-necessarily, difficult. DD

katekelly

dreamdaisy wrote:

It was my consultant who put me on them in the first place. She said they would help, and I would be on them for a limited time, and that was Feb 2007. I have to do what I have to do. She has done all she can, it's not wonderful, so I am still on pred. There is no other choice. Doctors vary so widely in what they advise, it does sometimes make things so much more, and un-necessarily, difficult. DD

I have been on steroids (various doses) for all but 1 month (the last month of my last pregnancy) for 15 years. I know all the negative things about them but sometimes you just need that bit extra to help you through the day.

c4thyg

I agree that your pred dose is tiny. You body produces about the equivalent of 10mg per day anyway. Below that I wouldn't expect much effect unless it's with another drug. I was on 60mg per day and had a reprieve from arthur but the side effects were nasty. Once my dose dropped below 40mg I didn't get any positive effect from it, just the side effects! I have no intention of ever taking dread pred again. That said, for some it works wonders with few side effects. It's just not for me.

Have you tried phoning your rheumy nurse to be seen earlier? My nurse is great and evens emails me advice (as does my consultant). I recommend getting to know your nurse as she's your greatest ally when it comes to the consultant. Mine work very well together and I probably see them equally but my nurse is always my first port of call.

I wish you luck and keep warm if you're coming off pred. Pred increased metabolism so if you're coming off it expect a slow down in your metabolism and keep warm now the weather has turned.

xx