Update on Rheumy visit

[Buchanan16]

Hi everyone just an update on my mums visit to the rheumatologist.She thought my mum was looking great but she wasnt happy that she was only going down to 12mg as she would have expected her to be at 8 by now going by her reduction plan. I explained we were following slow taper with approval of our wonderful gp (who she knows very well) and that we had stayed at 15mg for 7 weeks as my mum had chest infection and we had stress of my niece wedding after which our gp suggested we reduce by 1mg per month which suited me perfectly.

She still wasnt happy and said she remembered that i was the one who loved steroids which i politely explained that wasnt the case and my main concern was my mums quality of life and at 86 if she is doing well and still reducing so i cldnt see a problem. i said that after reading various reports on the sites she had advised me to look on initially the majority advocated for a slow taper no more than 10% reduction.

She finally said we would need to agree to disagree but she was happy for us to carry on as we were as she couldnt force us to follow her advice.

I also asked about adrenals and she said that was another reason to reduce quicker as longer she is on steroids the harder it will be for her adrenals to waken up.

She was really nice to my mum and we have an app to go back in 6 months and if she ever gets any pains or anything in her head or gca symtoms we have to call her and she will fit us in for a scan before i consider increasing steroids again.

In the meantime we will continue using DLs 5 week taper 1mg at a time at the moment and if we need to go slower or reduce that to 1/2 mg that's what we will do and if my mum needs to stay on a low dose to give her a good quality of life so be it.

Thanks again for all your support as dont think i would have gotten through past 9 months without it.

Hope you all have a Merry Christmas.

[PMRpro Ambassador]

That is all good to hear - but does it not occur to the good lady that rushing the dose down has its own risks and GCA doesn't disappear in a few months? So glad you stood your ground - but how patronising! So pleased you have a sensible GP.

[DorsetLady PMRGCAuk volunteer]

Pretty good outcome then - at least she didn’t push to taper more quickly which she might have done if you hadn’t stood your ground on your mum’s behalf.

As for adrenals -plenty of us have been on GCA doses for 4years or so and they have recovered fine . There is no guarantee your mum will -but that’s for the future -as you say QOL is what matters at the moment.

Hope you all have a Merry Christmas too.,

[Grammy80]

Good for you for 'sharing' your position and priorities for your Mom. The way your mom feels and can interact, is by far more important. I think it is so wrong of the Doctor's to be 'disappointed' in the patient; it isn't a race. The body makes the decisions on what works. Glad to hear she will get you in should she have any issues. Good for you!💞