specialist nurse appt Thur 20th

jordan7j

Hi, it will be the first time I have seen Laura. The consultant added sulfa to the mix of mtx and hydroxy in April and wanted me to get checked out around 6 weeks later.
Just wondering what this appt is really for? what will she be likely to ask me? will there be more tests? i get my bloods done every 2 weeks now.
Should I go prepared with a list of questions (even though I dont really know what sort) i.e. about getting a podiatrist/chiropodist appt and maybe at OT as never seen one so far.
Sorry if it sounds vague, but thats how I feel!!! :oops:

ironic

Hi Jordon,

Yes take your list. She will be able to point you in the right direction for help. At least you will be able to talk things through with her.
Hope it goes well for you.
Lv, Ix

lindalegs

I agree with Iris, Jay, you should take a list with you. It's best to have it with you than leave it behind and wish you had it ....if you see what I mean.

Hope it goes well.

Luv Legs

jordan7j

Thanks ironic and legs,
wasnt sure what she was actually there for, as no one has explained what the appt is for other than to check the meds. Also I am on 2 sulfas a day now for 6 weeks, it says ont he bottle to throw the rest away. Seems odd!! would they normally take me off it again after 6 weeks? will obviously ask about that too.

lindalegs

That does seem strange telling you to throw them away .....what I can't understand is why put you on them for such a short time, sulpha usually has to build up in your system before it becomes effective (like Mtx). Add that to the list too Jay.....just 'cos I need to know too :?

Luv Legs

barbara12

Hi Jordon
I think they should have explained more about the appointment, they expect you to ask, but like me I forget everything when I get sent for new appointments...shock I think....but always go prepared with lots of questions even if you dont get through half of them.
Good luck
let us know how you get on.
Barbara xx

dorcas

Hi jordan,

I see 2 different specialist nurses at rheummy,

one nurse follows up patients on anti tnf meds; she checks all my joints for arther activity, fills in a form (DAS..Disease Activity Score) and also a form that gets sent to the research bods at Manchester University. If necessary she arranges for the consultant to see me in the clinic that day. I see this nurse every six months.

the second specialist nurse monitors patients who are on Mtx injections; she takes bloods (even if I've had them done the week before :? ) asks me how I've been (for side effects) since the last appointment and makes note of what I've said. She also checks joint activity and I have to take in my 'MTX shared care' bloods monitoring card for her to see in case any adjustments to the dose need to be made.

So...may be your specialist nurse will be monitoring how you've been on your new meds and what arther's been up to.
It would be well worth making a note of how you've been feeling, how arther has been and whether you've had any probs since starting the meds..... also any questions you have!

I'm sure it'll go well....but they should have explained to you what to expect at this appointment!

Iris x

skezier

Hi Jay,

Can't really help except to agree with the others. Leaving you a ((( ))) and hope it goes well and someone does explain it to you better. Luv Cris x

jordan7j

Hi everyone, just a quick update, and thanking you all for your help and advice.
Saw Laura yesterday, she asked how I was doing on the meds, re side effects. I have been lucky with that, the sulfa is fine,a nd she has increased it to 3 pills per day. She said my inflamation levels are going down (good news) but this isnt in line with the pain.
She asked me about work, and then advised me to cut down on the hours and this would help with the fatigue too.
I told her my lower back pain was getting worse. She said that it was probably due to the fibromyalgia, and did some tender points tests to confirm this. She then added pregabelin 75mg twice a day.
She asked when my next appt was with the consultant, I told her its 16th July. She was happy with that, as by then I will know if the meds are ok.
i mentioned that sleeping is a problem, as I wake up around 2 am and cant get back to sleep, and I have to be up at 5.45am for work. She advised that I get up and have a warm drink then try to tell myself that its time for sleep and to relax, dont know if this will work!!
She said I have swelling in my hands, but my feet are worse and my ankles are like balloons by the end of the day, due to being on my feet quite alot walking with the doubnle buggy.
Anyway, thats about it I think, thanks for reading this, take care everyone love Jay x x

lindalegs

Thanks for the update Jay - it's always good to know what's happening. Laura sounded very helpful and you sound far more positive than you used to.

Luv Legs

frogmorton

Hi Jay

good to see you

Sounding as though you are getting things under control and the rheumy nurse is nice

Hope you go on ok with the extra meds - have you thought about elevating your feet for part of the day if you can for those poor feet and ankles??

Love

Toni xx

dreamdaisy

Hi, hope you're ok today.

Pain and inflammation levels are not linked, at least I don't think they are. My levels are currently at 1 and 5, but the pain is stopping me from moving. That's how it goes.

I think the nurse wanted to see you just to monitor how the meds are going. I tend to forget that sulph and meth are powerful things (I've been on them for years now) and they do have to keep an eye on you in the early stages. She sounds good, your nurse, I hope you have a rapport with her. Good luck with it all. Dreamdaisy