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