Nurse appointment

Hobble

Hi all

Had my rheumatology nurse appointment on Monday. Ended up going in the wrong entrance and got a tad lost so I asked one of the hospital volunteers the way to rheumatology. I managed to get there ok and was booked in. A few minutes later the same chap called me in and I thought ooo he must help out here too! Anyhoo it turned out he was the rheumatology nurse
I started the Methotrexate today after 4 days of procrastination because of the possibility of nausea etc. Took it at 12pm and so far so good just a slight bit of tummy upset a few hours later.
I also told the nurse that I thought I had developed a skin fungal infection as I've been a bit run down for a while. Turns out it's a psoriasis flare which can happen after the steroid depot. Would have appreciated a heads up there
Also been advised to have the Pneumovax jab but luckily for my arm there's a current shortage of the vaccine.

Hope you are all doing as well as possible

Hobble

dreamdaisy

I've been taking meth (via injection) for years now and have no trouble with it, apart from occasionally being extra tired for a day or two after. I didn't with the tablets either until I developed a skin rash which, after years of eczema, I ignored because it wasn't anything new: rheumatology didn't.

My hospital ( a teaching one ) has always advised me to stop the DMARDs and my anti TNF when the signs of infection begin, to allow my body to fight it off. Have you been told this? Be assiduous with hand-hygiene and that of those around you, especially at this time of year when the bug lurgies come out to play. :roll: DD

Hobble

Feeling a bit wiped out since last night, so assuming it's the Methotrexate?
No I haven't been told about stopping meds with infections although it does make sense but that should have been pointed out.
Thanks again for the advice DD - would hate to have learned about that the hard way!

Hobble

dreamdaisy

Many hospitals take a different view which I don't understand, maybe it's because mine is a teaching one? Who knows? :? To me it's common sense to stop the meds for a week or two so the immune system can stir enough to begin the fight. When we're immuno-suppressed we don't produce symptoms as quickly so bugs can get really entrenched before we know we have them. Anyhoo, as I am not a rheumatologist or a nurse (just a very experienced patient) please do not take my word for it, check with your hospital!

I have spent most of my life taking medications and never think twice before starting a new one (I barely think once ) but if this is all new to you, it must be very daunting. DD

Hobble

Thanks again DD

Mine is a teaching one too although you wouldn't know it :roll:

I've been on meds constantly since childhood and only had to be mindful of interactions and allergies.
Knowing what I know about the immune system and how immunosuppressants work you would have thought it would be worth a mention to at least advise not to take the next dose until you've seen a doctor - even if it's just to be on the safe side - if that makes sense?
I'm not daunted as such but feel that I'm just treading water in uncharted seas, which I find really frustrating. The thing I do find daunting is the knock on effect of how this is affecting the other conditions I already have. It's all really exhausting.

Hobble

dreamdaisy

I used to ring my rheumatology helpline to tell them I had stopped the meds and why then again when I restarted, now I don't bother because they never acknowledged the calls. I never tell my GPs because they don't prescribe them. I know from my experience as a patient that there can be a disconnect between what we are told and what the medicos think they have told us.

I know what you mean about navigating uncharted waters but I reckon we start doing that the moment we climb out of our pushchairs . . . . DD

Hobble

Sorry but I don't get the pushchair analogy. Maybe I'm missing the point, I don't know. All I know is that it's all new to me and it's affecting all the conditions I already struggle to manage as they all have a knock on effect. Sorry if in some way I mght have said the wrong thing.


Hobble

dreamdaisy

No, no, it's not you, it's me not explaining things properly and using a clumsy analogy :oops: I apologise.

What I meant was that before we leave our pushchairs someone else does all the organising and sorting stuff of life but we cant wait to get out and start being independent - thus we begin to take on more responsibility for ourselves and that's the uncharted bit which increases day by day.

Thinking back on it I have to agree - it wasn't a very good analogy, was it? :oops: DD

Hobble

Hi

Please don't worry, I thought it might have been something which I had worded badly and had confused you, as my foggy brain wasn't making a connection with the analogy!

Hobble