Sorry, I need to review ne more time! PMR for past 15 months. Started at 10...up and down for a year...felt good at 7 mg. Stayed at 7 for 6 weeks..reduced to 6 mg...Disaster! Major Flare. Back up to 10 mg....benn at 10 for 10 days...feeling ok again. How long should I stay at 10...should I reduce with the same tapering regimen that was successful...or only go down .5...? Thank you for any recommendations or experiences.
Hi Kathy. I really can sympathise. I managed to get to 7.5 with no problem. When I tried to reduce very slowly to 6.5, big problems. Pain in upper back between shoulder blades renders me unable to move for ages. Also really painful heels. I certainly haven't been overdoing it, as I had a spinal implant op a few weeks ago so can't do a lot anyway. What I do know is that once you get below eight mgs, your adrenal glands have to 'kick in' and start producing cortisone again. This can take time so if you reduce below that too soon you run into problems. I am going back up to 8.5 for a bit to see if that helps. I am also going to request a blood test from my gp to see whether my adrenals are functioning properly before I try again. Hope this helps. Take care, Debbie
Thank you. I think if I can work my way back to 7.5 I will also ask for the adrenal test before I go any lower.
Hi Kath
Such flares are very common in the first 12-18 months or so of treatment and especially at around the 7mg level as that is roughly equivalent to the amount of natural steroid (cortisol) that our bodies make when well. This natural production is suppressed by the artificial steroids and needs to start getting back to normal production as you reduce the Pred at around this level. Until it kicks in there will be a shortfall therefore leading to increasing pain. Hence the need to taper really slowly at this point. As you say you are now feeling ok again after 10 days back at 10mg, then you will probably be able to continue reducing successfully again, at least to the dose just above where you started the flare, say 7mg. Why not try alternating 9/10 for a week, followed by 9 for a week, followed by 9/8 for a week and so on, all the time monitoring how you feel. Then once down at 7mg, remain there for at least a month. If still ok then start reducing again but this time in only half mg decrements and only on one day of the first week, two of the second, three of the third etc. The slower you taper, the better - it not only allows time for the adrenals to get up to speed but also somehow seems to trick the body into not noticing the steroid withdrawal.
MrsO has made one suggestion, the other is to use the "Dead slow and nearly stop" reduction - and maybe even slow it down even further by repeating stages and only doing 1/2mg at a time.
It is described in the replies part of this thread:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
Once you feel well again there is no reason not to try a reduction - just be wary and watch out for any changes that suggest a flare.
I appreciate your taking the time to go over this again with me. I am almost in a panic for some reason. I will follow your advice and do the slow taper. Dont know why I cannot remember the plan and stay to the task. Thank you!
Thank you, Eileen...I think I need to tape these responses to my forehead!
Probably the pred - at one time I, who was the world champion in multi-tasking, couldn't pack a suitcase for a weekend away without going into meltdown. And if I was asked to divert my thoughts for even a few seconds I was in tears. I have a suitcase to pack this week for a holiday and a congress afterwards - god help me! It would be a lot easier if the congress was first...
Just popping in to wish you a safe and happy journey Eileen. I hope you find time to enjoy China. My husband and I were able to jump ship in China for 10 days when we did our around the world freighter cruise a few years ago. China had not been on my bucket list, but it should have been. Our days there were amazing and eye-opening in so many ways.
Since we have to go for the meeting - in Wuhan - we decided there had to be a tour added on whatever it cost. So we are spending about 10 days progressing from Beijing to Shanghai via the Yangtze in a group of 13 in total. I assume all the others are German-speaking as it is a German company and - equally - I'm assuming the guide will be German-speaking too. When we went to Korea it was the same company and we'd been assured the guide would speak German - no she didn't! In fact there were 4 of us, 2 couples, the others were German. Two guides, one for each couple, and both only spoke English. Not that we cared!
Round the world freighter cruise - now THAT sounds fun...
Eileen, I hope you have a winderful trip.There is always the distraction of the surroundings that may help you feel better. Best wishes!
It was fun. About 20 ports of call in 4 months and only 3 days of rain! You have to know how to amuse yourself though. No cruise director or fancy entertainment. Lots of down time for reading, writing, crafts, etc. My husband and I enjoyed it so much we didn't want to get off. The only down side was the food. Although we ate with the officers, the food was prepared by filipino cooks who overcooked everything. We made up for it by heading for the best restaurants in the ports of call.
We carefully avoid campsites with too much entertainment - even so we sometimes get caught out. A pile of books - or in my case my Kindle - and the computer for himself to play cards and we're happy bunnies. Shame about the food - we used to use a freight transport ship with the caravan and the food was the same as for the drivers. Superb!
Not a lot of scenery to sea though...