Hi All,
Sorry it's been a while since my last posting (July). Have been back and forth Scotland helping my mum recover from her illnesses and hospital stays. Between me and my neice I think we've got her back on track again. By the way, travelling long distances on trains and overnight coaches is NO FUN when you have PMR I can assure you. And I'm due to go back again mid October.
Anyway, my update after reducing steroids. The first week I had headaches on and off almost every day (normal headaches - nothing unusual relating to GCA) so, being a bit doped up with extra painkillers, it was hard to tell what the effect was. Second and third weeks the overall pain gradually got worse - to the extent that I would need to crawl upstairs a lot (was less painful using hands and feet than putting lots of pressure on leg muscles - and quite funny to watch too :lol
. My right shoulder also got worse but I don't know if being right-handed and using these muscles more has anything to do with this. Pain continued to increase a bit over next couple of weeks also (to end August). Perhaps being a bit stressed (mum's ailments, hospitalisation, etc) has contributed to this.
However, my last trip to visit my mum (by train) was where I noticed by accident that I could almost run again - trying to find my train carriage which was at the other end of the platform. Okay when I say run I probably mean very gentle jog (of sorts). Anyway it was a boost since previously the saying \"can't run to save my life\" was ever present especially when crossing busy roads. Over the last couple of weeks my overall pain seems to have stabilised (first two weeks of September). Last week I thought it had started to ease off slightly but the last couple of days it seems to have returned (not to the point of crawling upstairs - haven't done that for about two weeks now - good sign). THOUGHT: Did my pain levels subside because of the time of month? Anyone else noticed anything?
I have been walking more and (a little at a time but often) - despite the pain to see if this helps - and I think it has. The pain in my groin area has definitely subsided. I still struggle to bend down to pick something up and have to get down on my knees, but I can now sometimes bend my legs to crouching position (depending on time of day).
I would like to come down to 1mg soon but I think I'll wait another couple of weeks - just to make sure the pain has stabilised. I am just getting over a very bad dry tickly cold which has caused lots of sleepless nights. The plan is to be free of steroids by the end of the year at the latest. I do not take additional painkillers unless absolutely necessary (and then usually for headaches - not that they work) as I think if I mask the pain I won't know how much I am improving.
THOUGHT: PMR is a blood disorder (raised ESR/CRP) which affects the main muscles by attacking the muscle linings, hence causing inflammation and pain. When the blood levels have returned to normal (ESR/CRP) the muscle linings are no longer being attacked. However, although blood levels have returned to normal, surely it will take time for the muscle linings to repair and heal. Hence, could this be the reason we are still suffering muscle pain long after our blood levels are back to normal and have stopped taking steroids. Anyone agree?
On the subject of running again - have just had another go today and YES, I've improved - I definitely did a short slow run up the garden (mind you it was about 4pm not 9am) but it's a start. At least my lower body is improving.
NB: Does anyone with PMR cycle and, if so, does it help? I've often thought about cycling again and wondered if this could help.
So, to determination, belief and success ...