I was diagnosed with PMR at end of May and put on 15mg of Prednisolone reducing to 12.5 two weeks ago. My reduction plan says in a week's time I reduce to 10mg. I am a bit nervous about the next reduction because of the full time care I provide for my disabled daughter and the awful memories I have of being in so much pain before my diagnosis.
Thanks to this forum and all the advice given by PMRGCAuk I am aware of the importance of a slow Pred reduction. This morning I went to regular Thursday GP who I've always had a good relationship with and prefer her to main practice GP who I find very arrogant and dismissive. I asked for 1 mg tablets so I could reduce by 1mg every few weeks. She looked at me puzzled and said they only deal with 5mg and the reduction should have been from 15 to 10 and now down to 5. I told her that wasn't the case and reduction has to be far slower, that the specialist who diagnosed me had written out a slower reduction but she just sniggered and shook her head as if he was an idiot.
I told her I am trying to look after my health because I would hate to go on to develop GCA. She laughed again and told me to stop worrying, assuring me that PMR has nothing to do with GCA. My response was to tell her I was mindful of the care I needed to take with my health rather than worried.
I don't know what has scared me more - her ignorance about PMR and GCA or her closed mind. I am feeling very vulnerable - and concerned about the inconsistent advice that's doled out to patients about this serious condition. I think for the first year after diagnosis we should be under specialist care in order to avoid these fast Pred reductions and risks of relapse.
Thankfully I was prescribed 5mg and 1mg preds.
Maybe the GP googled PMR and GCA after I left just to double check that she was right and that there is no connection between the two. Let's hope so!
Thanks to PMRGCAuk I was able to leave leaflets at GP reception, which I hope the staff will take the opportunity to read and have them at the ready to hand out to newly diagnosed patients.
We have to respectfully but firmly stand our ground although it's easier said than done when you're not feeling that well...