Smooth sailing..........hey that reef wasn't on the chart!
Posted , 11 users are following.
I've just finished my 2nd year with PMR as my friend. I'd had difficulty getting past 10 mg of prednisone until I went fully with the DSNS reduction, dropping .5 mg about every 7-8 weeks. Very slow but really can't complain as there have been few bad days. Just have been accepting the pred side effects as a necessary trade off in order to have a fairly functional life.
I sailed down past 10 mg and currently am at 8.5 mg and over 1/2 way to 8 mg. Wait a minute.........been feeling those old familiar muscle pains over the last week. I thought it was just a little resistance to stepping down to 8 mg and it would pass. I have my doubts now and think I better add 1 mg a day for the next few days and see what happens. If it's inflammation piling up I'm hoping the extra pred will knock it back down and then I can continue on the reduction. If not, oh well I'll just have to find a comfortable dose and put the reduction on "hold" for a while. With the holidays coming, it might be wise to keep the dose stable through year end. Just a thought.
It's funny how one (well, me anyway) gets going smoothly and you set this mental goal that you're aiming for. In my case I thought I had it nailed and was going to reduce smoothly down to 7.5 or 7 mg. So much for that! It's a reminder that it surely isn't smooth sailing for the majority of us when it comes to reducing. Just watch out for those uncharted reefs!
3 likes, 9 replies
EileenH TheRaven
Posted
"If it's inflammation piling up I'm hoping the extra pred will knock it back down and then I can continue on the reduction."
But if it is piling up - isn't that because the dose is just a bit too low?
TheRaven EileenH
Posted
Right - thanks for the reminder, Eileen. A person gets so fixated on the reduction that sometimes one forgets that it's not just about reducing, it's about the correct dose that takes care of the inflammation. It's might not necessarily the dose I'd like it to be but that's reality and what works.
lynda62707 TheRaven
Posted
hi raven....I LOVE your wit and sense of humor....something I can SO relate to!
I've been bouncing around for apprx 8mo now (15mg to currently 12).....jury's still out, but the side effects have been horrible! 47lb weight gain, profuse sweating, emotional wreck, muscle cramps, exacerbated cataract problem....on and on and on!! I've been told I'm Super steroid sensitive!
YOU THINK??!!
anyway, I agree that the holidays are not the best time to experiment with tapering...too many other stressors goin on (both good and not so)!
I'm in California, so along with everything else, I'm trying to deal with the fact our beautiful state has been ravished by wildfires this week! so much dispare....😵😰😷.
priscilla23271 TheRaven
Posted
Hi Raven, I've just passed the 2 1/2 year mark, and like you have had trouble with tapering. I've tried to get from 7 1/2 mg to 6 via 1/2 mg monthly steps, but had quite a few aches and pains....however I went back up and succeeded on the second try.It's so difficult to differentiate between PMR pain and any other sort which you may have forgotten you had before, or new ones which the steady pace of getting older have caused. I've always found that the first week of the lower dose can be a bit painful but if you stick with it it eventually sorts itself out. I do think that if you are anticipating a stressful time of any sort it is wise to stay at your present dose in the meantime, and I have done that in the past. Good luck.
nick67069 TheRaven
Posted
I am at 3 year mark. Most of the reduction was smooth. Got as low as 3mg, but had some hand/wrist pains and had to go up in dose (up to 9mg, but am back at 5 tapering to 4mg). I have pretty much accepted approach that I will take as much pred as it takes to have reasonable quality of life and not worry too much how long will it take to get to the end zone. I have also used exercise to reduce muscle atrophy and live pretty physically active life. I am in decent shape in spite of PMR, but I was in good shape before PMR started. Besides physical, exercise also gives me stress reduction that is so important for us PMR sufferers.
What I am trying to say, it is not worth setting reduction goals; for me it is far more important to have decent QOL, which cannot be measured in mg ... Who cares if I am at 3 or 4mg or 7? On a flip side I do care weather I can keep up with daily life.
ricky23486 nick67069
Posted
Nick, you put this so very clearly - i am in my 4 th year of coping with pmr and am only now - after all this time - beginning to understand the importance of recognising that it is the way that i feel that is telling me how much i can do, how much exercise to take, what to do when i overdo it, when to slow down , and how much prednisone to take..... without feeling a failure!a slow learner perhaps but without the oft repeated wisdom of this forum i might never have learned!
thanks 😃
Silver49 nick67069
Posted
That's it in a nutshelll. Take as much Pred as is needed for quality of life. This isn't a rehearsal and we need to make the most of it and enjoy life in whatever way suits us. We will all have different ideas on how we spend our lives but don't always have control over how it is spent. To an extent we have control over how we treat the PMR which means taking a positive outlook on the use of Pred and seeing at as a friend. Once I realised that, it helped me greatly. The next positive step I need to make is to stop tinkering at the edges of the low carb regime. You are absolutely right, Eileen, it works but I just get so far, fall off the wagon, my halo slips from getting to Twiggy (never) and applying for the Michelin man advertisement. Onwards and upwards.
TheRaven nick67069
Posted
Nick,
I certainly agree with what you're saying. We may even have had a discussion about this once before but that just means we agree twice as well..lol! Sounds like we were about the same in regard to being physically fit. I've lost most of the muscle tone over the last 2 years unfortunately. I'm still working 40-50 hour weeks and fatigue has me wiped out by the end of the day. The work itself doesn't keep the muscles toned anymore. Exercise isn't an option at that point. Like you said, QOL isn't measured in mg's. It's all about trade offs and I'm fine with that. I've got about 2 years until full retirement and hope to make it. In the meantime I'm buying stock in Prednisone 😉
nick67069 TheRaven
Posted
I can't imagine working with PMR. I need my afternoon naps, and work places rarely provide for that 😃 . As far as muscles, it is almost impossible to gain any with prednisone. I have been going for PT for knee for 6+ months and gained some strength , but have not developed any additional muscle mass in spite of focused effort to do so. We are taking wrong kind of steroids and will never bulk up 😉