advice on taper - can we really expect to feel as well as we did on the starting dose?
Posted , 8 users are following.
Hi- I started a thread earlier today about having an atypical presentation which went undiagnosed for years but since this is a totlaly different question I thought I'd do a new post.
Basically I was started on 20mg which made me feel very well to the point I'd hardly know I had the illness. Intially reductions went well. if I had a blip I could easily relate it to overdoing things.
Once i got under 12 or so I started to feel slightly less well - though i did wonder if that was also something to do with the start of winter. Persisted with a slow reduction - did feel a little of the morning stiffnes creep in but not too bad. At 10 a had a flare which I think was causes by the central heating packing in - so not too worried and it didn't last long.
Then I had another one which was not so dramatic but without feeling dreadful I wake up every morning feeling i have PMR again.. the symptoms are relatively mild and they do usually wear off as the day goes on but not always.
I went back up to 12 again but it hasn't really helped
Anyway - I have seen things on the froum saying you should aim for the lowest dose you can function on - which indicates I should persist with the slow reduction.
However lately I have also seem the opiinion that you should aim to feel as well as you did on the starting does. In fact I think I read that in quite a recent post from Eileen.
Just looking for any thoughts. I felt great at 20 or even in the highter teens but obviously can't stay at that forever or even for a long time
0 likes, 24 replies
shelley45866 greentea26
Posted
rachel24455 shelley45866
Posted
Fantastic! I've tried this but am sooooooo fatigued after being on 10mg for 4 weeks that I'm sneaking back up to 12.5. I just feel like I have low grade flu and it's as much as I can do to get thru the day.
EileenH rachel24455
Posted
The fatigue isn't really affected by the pred - it just controls the inflammation to relieve those symptoms. Fatigue must be managed by lifestyle changes and pacing and the only likely reason you feel better in terms of fatigue at a higher dose is because of the Duracell Bunny effect pred can have. And it is far better for you in the long run to get to a lower dose of pred.
rachel24455 EileenH
Posted
Thank you Eileen - good advice if not the advice I wanted! I'm back to 10 and doing more sitting around.
EileenH rachel24455
Posted
It isn't just sitting around - it is distributing your activity in small bites. Often you can do a lot more by doing 10 mins, resting for 5-10 mins, doing more and so on. And often a gentle walk makes you feel less fatigued and helps the stiffness. Have you read the pacing links in this post? They are at the bottom I think:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
julian. greentea26
Posted
original symptoms, about 3 years ago, were screaming pain in upper arms, a bit of stiffness in upper legs. And generally tired, but then I was doing lots.
Instant relief, running up stairs 3 at a time, most pain faded.
As I reduced pred, and time went on, I struggled a bit - wondering when walking a km if I could walk back.
I've generally lost muscle tone as I pace what I do. I'm relatively stable on 5mg pred, generally doing what I want, but very wary of overdoing things. I do things very differently to 3 years ago. Three times longer to do anything.
When I overdo things my hands and wrists (muscles not joints) suffer first and stiff arms. Walking 10-15km is fine. Cooking (stirring pots at arm's length) and, like today, using a drill and spanners, take their toll. Some relief from exercise that gets my blood flowing.
I'm also three years older.
I guess I'm trying to say that my PMR is not static. Its changed over time, I guess as my body inexorably adjusts. Its at least a mix of symptoms, pred, pred side effects and activity. And it changes over time.
I should mention that somewhere in the middle the pred mental side effects were more than a bit evident. Not enjoyable.
While I would like to feel as well as I did on the starting dose I have some doubts that is achievable. Who knows what a higher dose of pred may have achieved, I don't think I would have liked to find out. It took time for side effects to become evident, long term use seems to be different to short term use.
I'm still relatively active, just differently to 3 years ago.
greentea26 julian.
Posted
Interesting observations. As you say all PMR is different. When I overdo things it is in my legs rather than arms that I feel things.
Like you it took a while for side effects from pred to kick in but now I'm afraid they have. Hopefully they will become less if I get to a lower dose.
julian. greentea26
Posted
side effects definitely less and are hardly noticeable for me at 5mg. A few months ago had a wonderful moment when I realised I'd remembered a six digit number for more than a few seconds.
julian.
Posted
also part of the original question - about being like it was with the first burst of pred - there was a time last year when "something changed". It showed most when I went for long walk up and down hills and felt the wonderful stiffness of exercised muscles, which is very different to the pmr stiffness.
I still have both stiffnesses.