I look like a newbie to this site but I have had PMR since 2007 – with two major flares both times when I have managed to get down to 2mgs steroids. I have had to re- register for this site( was Gillb) as I couldn’t manage to change my e mail address – don’t know whether technology frustrates me more than PMR – but oh yes I do – definitely PMR!!
At a regular 6 monthly rheum appt in January this year, the Dr asked me to increase my steroids from 2mg to 3 mg and then have another blood test after two weeks, as he had noted that my CRP was creeping up again (16 at that stage). He showed me a graph indicating the gradual rise and the fact that this had happened back in 2014 when I had a previous flare. I must admit I was most impressed by his approach. At the time I was feeling great -was walking 1/2hour daily. I was feeling good in myself – had lost the fat jaw line, my hair was looking healthy and was maintaining some sort of style. I was able to do all I wanted to – we had had a good Christmas with lots of family activities. I had noticed that I was a bit slow to wake up and get going in the mornings but I had no reason to rush – I have learnt over the years to pace myself and be good to myself!! So I was quite taken aback by the indication that things might not be as good as I was feeling. Unfortunately I never made it to the two week blood test! A week and a half later I experienced an evening when I felt extreme cold and felt terrible. I went to bed with two duvets and blanket and slept 12 hours – I limped around the next couple of days – not feeling quite right but nothing I could put my finger on – was I sickening for flu – I couldn’t believe it was PMR related – I didn’t have any stiffness exactly or pain. That is until after the weekend when it hit me hard – right back to full PMR – pain and stiffness across my scapulas and neck, couldn’t put one foot infront of the other etc. etc. etc. I managed to get a blood test right away and an emergency GP appt who increased my steroids to 10mgs. By the next day I couldn’t even walk across the bedroom, or get down the stairs. Two days later I was in so much pain the GP increased the steroids again to 20mgs and oh for relief again - with adequate pain relief and the steroid increase I am finally on the mend again!!
The reason for this discussion is to ask how you all monitor how you are feeling? Do you have any indication if a flare up is imminent? I have discussed this with my family who agree I was really good before this flare BUT I had noticed increased morning lethargy – just didn’t relate it to PMR. I don’t have any real stiffness in the mornings once the steroids are suppressing the inflammation so I can’t monitor increased stiffness. At present I am keeping a score out of 10 at bed time, as to how I am feeling. It depends on the time of day when I note the score as one day I was feeling really good and went to the shops and then had to come home and sleep as felt so awful - I don’t need to spell it out to you all – was just wondering if anyone had any great way of actually taking notice of how they were progressing in their recovery. I have always reduced on the dead slow method and try not to think too much re the amount of steroids I am taking, as I feel one can get so hooked up on medication and wondering if I should be reducing more quickly or more slowly. I know I am in for discussion with the rheumatologist as to whether I should go on to methotrexate this time of reducing, but have held off this discussion until the brain fog has gone and I am on way down again! I am meantime taking note of all your comments. Thanks for all your input to this forum.