Update on journey with pmr
Posted , 9 users are following.
its been 6 months now since I last posted, I'm surprised how fast time has gone. Last time i had reduced to 9.5mg pred and had a few twinges after doing so but eventually these went away. i was still suffering from some anxiety and blood tests showed i had gone from very low risk of diabetes a year before to pre-diabetic, that was in April. At the end of that month i saw my Rheumatologist who advised me to try a faster taper of 1mg every 3 weeks as he was concerned about my glycemic control. i followed this (more or less) until i reached 6mg in mid july. At that point there was no anxiety, and glucose levels back to normal. naturally i over did things a bit also and had some pain in backs of my thighs appear when resting or walking up steep hills. i decided as my Gp was away and next rheumatology appointment not for months to slow down the taper reducing 0.5mg every 3 or so weeks depending on the result, well that was the plan anyway! So when pain free i reduced to 5.5mg and was rewarded with some aches in backs of both thighs and both groins, the later felt like joint pain ie hurt moving legs apart etc. i was also very tired for about 10 days after the reduction. Once feeling better (although not completely pain free at all times) i tried 5mg at beginning of September. in truth this wasnt too bad with some of the aforementioned hip area pain on occaision but no stiffness at all. So at beginning of October i tried 4.5mg. While i have no recognisable side effects from the pred and blood tests all are better than ever, i have slowly developed some mild shoulder aches on both sides that comes and goes, especially after exercise and the hip pain is more consistent (although exercise helps with that). none of this is disabling like the pain and stiffness this time last year before I started pred at XMAS but i am worried that this might get worse again and I'm certainly not ready to try any further reductions. My GP is happy for me to decide and there is still no sign of next Rheumatology appointment. I'd be really interested in comments from those of you with more experience than me both on whether these milder pain/aches without noticeable stiffness is something others get when tapering too quickly (or whether we just put up with this sort of thing) and at what point i should try increasing the dose slightly or should i just stick it out?
1 like, 3 replies
EileenH derek98287
Posted
Sometimes I really do wonder!!!! Instead of telling a patient with PMR to cut their steroids to achieve better glycaemic control they should be telling them to cut their carbs!!
When you do a reduction, however you do it, slow or fast, you should not feel worse at the end than you did at the beginning. Your guide is the level of freedom from pain you achieved at the starting dose - that shouldn't increase. You may find other pain returns, osteoarthritis for example, but the PMR pain should remain stable. If I were you I'd stick at 5mg for a few months - providing the pain doesn't get any worse.
derek98287 EileenH
Posted
Eileen thanks and so do I. yes its quite likely i have OA in my hips too as i have nodal OA in my fingers for years and was told to expect that to spread elsewhere and i suspect some of the stiffness i had in that area was from OA, It was the shoulders that sent me to the GP in the end but by the time i was prescribed the Pred my hips were definitely afflicted by pmr as well as i could not get out of a chair without help. Although i tried the faster taper I also cut the carbs and started an even healthier diet generally and i think that is why the glucose levels improved rather than the reduction in pred. i also lost some weight, though slipped slightly on that score in the last month thanks to the returning aches and pains, my instinct tells me you are right that i should go back to 5 and stick at that for a while and try reducing again later.
derek98287
Posted
just coming back on this with the latest, and would welcome any further thoughts. i took 5mg for a couple of weeks but no improvement and in fact thigh pain especially in backs of thighs slightly worse, comes and a goes a bit though. mild shoulder aches appear in the evening but no stiffness yet in the morning. its as if the pred is still holding back stiffness but not doing the job on the aches and pains - although no where near as bad as before the pred, I think I've read somewhere that stiffness is often well controlled but pains are not. Anyway saw my GP on Friday last week, she agrees with me that this is most likely down to too fast a taper from the Rheumatologist and reducing by 1mg every three weeks may have led to not spotting the first signs i had crossed the line to not enough pred. We agreed that I would increase back to 6mg immediately and no more reductions before Xmas. (6mg was the last time i recall being pain free, but there is a chance that in fact the line was nearer 7mg and that coming down after only 3 weeks may have confused things), not sure if that makes sense? do others find that when tapering pain comes back but not the stiffness? and this rear bilateral hamstring pain has anyone experienced this - when i first had PMR symptoms last year before the pred my hips and legs were so stiff i couldn't really distinguish the pain itself from the stiffness, all of which resolved, in legs and hips and legs at least, as soon as i started the pred, unlike my shoulders which took a few days longer.