Newly diagnosed this year

[PhillipsJ]

I am new here and want to feel in control.

Recently had an acute flare and 999 to hospital. Home now off work and on a 30mg dose of steroids having been told last week at clinic I was in remission!

[oldtimer]

Oh dear - that's upsetting and makes you feel like not trusting your team - but it happens that one day you are fine, the next having a flare.

Do you have a telephone contact to ring when things happen unexpectedly? I've found that very useful when I've been given a nine month review (because things have settled down) and then things flare up suddenly and I need to be seen NOW. I ring the help line, the rheumatology nurse can either advise, ask the consultant for advice and ring back or get me seen if necessary.

[PhillipsJ in reply to oldtimer]

Hi

Yes I do have a helpline but they don’t reply for 48 hrs which is often too late to confirm medication doses. The helpline says contoyour GP for advice however they are too busy to see you for weeks before an appointment can be made.

[Shalf in reply to PhillipsJ]

Hi Philip

Hope the pain has settled. Frightening experience to say the least!

Should this pain get unbearable again, ring NHS 24 or go to hospital again if need be. I know too well how it feels to be in excruciating pain especially on a weekend!! Stress makes RA so much worse. If you can't get a gp appointment, ask the surgery for a gp to phone you and they can contact the rheumatology dept for advice.

All the best

Suzie x

[Gnarli]

Hello and welcome. It seems to be the way RA behaves sometimes. One minute under control and the next - well, you know the score. I sincerely hope you get the help you need to get back to 'normal' as soon as possible.

[PhillipsJ in reply to Gnarli]

Thank you if only there was a team within the area I live to support and advise the dose

[Gnarli in reply to PhillipsJ]

I'm assuming you're in the UK? If you are have you tried ringing the NRAS helpline? It's 0800 298 7650 in office hours and they are lovely, helpful and sympathetic without being patronising. Like us on the forum though, they won't be able to offer medical advice. Do you have a helpline to your rheumy nurses you could access for the medical side of things as they would be a good source of info regarding dosage.

J

[PhillipsJ in reply to Gnarli]

Yes I do live in the UK, Wales.

There is a helpline but the their capacity does not allow it to be effective.

They are unable to return your call for 48hrs therefore feel

Alone managing this condition. I am a nurse but do not have the specialism in this area despite reading as much as I can about the condition,

[Gnarli in reply to PhillipsJ]

I'm truly sorry that you're in this situation. Unfortunately, feeling uncontrolled and isolated seems to come with our disease which is one of the many reasons I am so grateful for this forum.

[PhillipsJ in reply to Gnarli]

Thank you for your honest words.

I feel great today not sure is it a swim in the sea or things are improving.