Thought I'd try to post a positive experience! Sun is shining here in Edinburgh after a horrendous wet day yesterday. i had my infliximab infusion this morning. I try to get an early morning appointment and arrived very early because the RA wards are now in a spanking new building which I'd never been to before. Before it was very worn and dreary, but the new building is white and bright and feels very well made. We have reclining chairs for the infusions and art for health paintings on the wall. Lovely. I'm sure that the staff are really boosted by this move, which was really overdue.
I've been having my anti-tnf for about 9 years now, and it gets done within an hour. You get good obs and today there was a lovely student nurse (hello if you're reading this - you'll know who you are!!) who was really interested in what its like to have RA, to get the new treatments and so on. She said that their education now involves a session on the expert patient and they're encouraged to be aware that the same disease can be experienced very differently in different people. So for me its just the back up mtxate treatment until mid-September.
I usually take it easy afterwards, went for an hours sleep, but am now picking up my day. Hope that's reassuring for anyone starting biologics.
XX Cathie
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Cathie,what an uplifting experience for you.It is good for our nhs to have some good reports. That nurse will go a long way. Hope you rest now. sylvi.xx
She said she'd look in at our forum, so hope she does as it must give people a really good idea of things. Am rested and waiting for an hour of tai chi now!! Hope you're OK today,
That's good. I hope we'll meet up sometime. I've been going to the W. general now for four years and I've always found them very helpful and competent. It'd be nice to see the consultants more often, but I'm on stable meds so I suppose they're better off seeing people who really need them.
Hey Cathie how nice to read your very positive blog and to know that there are good new heath professionals coming up through the system - very reassuring thanks!
My Tai Chi session was yesterday and I went with Barbara who you've met now. It lasts two hours and follows my MTX dose the night before so I confess that by 11.30am I'm looking at my watch and trying not to stare too hard at the chairs in the corner and by 12.30 when it ends I'm ready for my bed (where I admit I spent the whole afternoon in a state of wipe out!). I'm sure it's good for me but maybe not for 2 whole hours? Tilda xxx
I'm starting a new course of tai chi in August which will involve quite a walk - almost to holy corner and will last two hours. Got to get in training haven't I.Read somewhere that the optimum time for an afternoon nap was 20 mins but that wasn't for people with RA. So maybe an hous best. Xx
nice to know that it's not all awful.....great nurses, nice building, good drugs, sounds ok. Knowing our PCT it would be done in a corridor, on a stool. Px
Yes there was a period when I was in Oxford that treatment happened in a corridor but it didn't last long and we were set up in a relatively permanent place off the main RA wards. I feel a wee bit guilty talking about positive experiences, but then its important to hang on to the beacons of good practice. things must come right in the future and its good to know what works and what doesn't. Oh dear...
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