Something Positive

[Alazarin]

I thought I would share with you my experience over the last 6 months.

Having struggled a few times with getting to a low dose and going back up again, with all the despondency that brings, last year I got to 2m, then started to struggle.

My local Rheumatology dept, has a help line,for patients needing support, whenever I have called before there has been no one there, no facility for messages.

In desperation I called and spoke to the specialist nurse, who listened and was kind and understanding. ‘Change dose, for 2wks and I’ll call you to check how you’re getting on. And she did!’

Since then I have been guided by her advice, her tapering plan is alternate days for 1 month before landing on new dose. This has worked well for me.

‘ ring me anytime if you are feeling unwell’. She is amazing, and I feel that someone is there, who knows how it is. Big thanks to her.

I’m now back to 3/2 alternate, fingers crossed.

PS the Rheumy consultant is a completely different animal, but you can’t have it all.

[123-go]

That is good news! You must feel so relieved that the nurse has responded in a positive way and is keeping in touch with you. The 'ring me any time' is so reassuring. Good luck with the taper.🙂🤞🏼

[Constance13 in reply to 123-go]

‘ring me any time’ is so reassuring - and SO VERY RARE!👏

[Seacat30]

Wow it would be great to gave access to a supportive nurse like that. So glad that you have found help.

[PMRpro Ambassador]

That is more like it should be - and specialist nurses often are far better than the doctors.

If you repeatedly struggled at a particular dose, that is your body telling you that you have arrived at your destination: the lowest effective dose at the present time. And if it is only 2 or 3mg, there is no hurry to try to get lower.

[Alazarin in reply to PMRpro]

Yes, that will be my next conversation.

[SheffieldJane]

That sounds so helpful. You just feel that you are ploughing on alone sometimes, apart from sharing on here of course, but a kind, dedicated nurse sounds brilliant and I am sure helps the confidence and healing along.

[Bcol]

Really good you now have that reassurance and support and knowing it is available will help ease the stress and worry going onwards.

[Telian]

That is good to hear. Specialist nurses are worth their weight in gold in my opinion. Never had a bad one yet in any discipline.

[PMRpro Ambassador in reply to Telian]

It was telling my older daughter about a rheumy specialist nurse that partly persuaded her that maybe nursing wasn't as bad as she'd thought - she had transferred to private social care where the boss of the company was sailing his yacht around the Scottish coast when he was supposed to be on call. She realised that if you are in the right place you don't have to save lives to make a massive difference.

[borednow]

That woman deserves a medal!!

[cycli]

very happy for you. I concur that this support is critical. My recent consultation ended with the rheumatologist saying that it seemed I was the sort of patient who knew what he wanted done . He then asked me what I wanted from him. Given that I've seen him twice since diagnosis in June 2021 and his reports come 4 months after the tests and he didn't reply to phone calls or emails I was ready with an answer. Just pick up your phone when I ring you and spend 2 minutes of your precious time to respond to my problems. He agreed to this and we will see. I'm so pleased you have someone who has your interest at heart.