Bit of background: Had PMR for 3 years in October but only diagnosed 2 years ago in October. Been on a steroid reduction scheme but developed steroid myopathy in December 2019 (when I had a flare-up and increased steroids) which was only diagnosed in April 2020. Was advised to reduce 1mg every 4 weeks rather than every 6 weeks by neurologists and agreed by GP. I did okay reducing every 4 weeks on 9mg and 8mg but have developed a flare-up when I reduced to 7mg. Increased to 12 mg for 2 weeks but flare-up is not under control. Clinical pharmacist said guidance is not to hike up steroids as this would put me at increased risk re: Covid so she said try 1mg at a time. So I have had 1 week on 13mg but the flare-up is still not under control. I am planning to increase to 14mg tomorrow.
My dilemma: I have no idea at what mg of steroids the PMR flare-up will be controlled, so in theory this could go on for weeks. I am in pain and very down as the steroid myopathy has also got worse. Under normal circumstances I assume I would be given a short high dose? I just don't know if I should go against advice and, if I do, what mg to increase to. The clinical pharmacist advised I should be shielding too.
I realise that it is my own personal risk not to take advice - I do trust the pharmacist - but I have been dealing with this flare-up for 3 weeks now and as you will all know it is a PMR is a grim companion and coupled with the steroid myopathy I am feeling pretty low.