Well I am on day four of reduction still feel the same weird heavy feeling in head as day progresses it moves to my legs also not sleeping well,any ideas on how long this will last?I just can't seem to shake this off.
Suggest you go back to Doctors sounds like you need to go back up. Sleep paterns are altered as it is a side effect of the steroid.
When I reduced from 17.5 mg to 15 mg, it took me about 14 days to feel better. Don't know if this is what others have experienced. Am a newbie with all of this. Wishing you the best!
Carol,, I was a good 7 to 10 days of weird symptoms, physically and mentally!! Stick with it don't increase the Pred it will get better.
Andrea
Thank you I had no idea I would feel like this why did't the doctor give me a heads up. would have been nice 7 to 10 days is this every time you reduce hope not.
Thank you Linda.Iam new to this also this is my first reduction been on 10 mg for 2 months. I thought going on them was bad coming off is going to be worse
The doctor wanted me to reduce 1mg a month but many people on this site said that was very agressive so I chose to go down in 1half mg instead.It has been 4 days I will stick with it
Be patient, I am down to 4 mgs. and things do
change, in the meantime, try not to zone in on
discomfort which causes stress and makes
things worse, when I began with PMR I thought
my world had ended and here I am still perking
along, still a bit stiff and very tired, but the birds
are singing and we had rain in this terrible drought
which made everyone feel better - look on the
bright side. Love to all.
My doctor didn't tell me either. Just said that prednisone could cause side effects, told me some of them. But until I experienced them, I did not fully understand.
Hello carol, has any pain returned following this reduction? Or is this symptom sort of non related. I ask because as others have said this could simply be a new side effect that will hopefully reduce as your preds reduce.
imassume you have reduced from 10 daily to 9.5 daily. Is this correct? Because for your next reduction you could try reducing slower and less still. You could try a week, two weeks, three weeks or four weeks of 1 day old dose, next day new dose, in this case it would be 1 day 10mgs, next day 9.5 and keep going like that for any of the time spans mentioned, then go onto everyday new dose for six weeks then repeat the regime for the next reduction.or you could try 1 day new dose, (here I will use 9.5 as an example, then 6 days old dose, (for this example it's 10), then 1 day new dose, then 5 days old dose, then 1 day new dose, then 4 days old dose, keep going in this fashion then you repeat the principle backwards so that you eventually end up taking 6 days new dose 1 day old. Then stay on your new dose for a month to six weeks and repeat the regime. Now both these examples are really slow reduction methods with the smallest of dose reduction. Provided there is no inflamation that is bigger than the amount of preds that you are taking all should be well. It's about conning your body, letting it think it's getting what it use to get but it's not really. All the best, christina
Hi Carol, I've only reduced twice, the first time from 20mg to 17.5mg, and my goodness is was like a psycho!!!!!,, plus aches but nothing like the untreated PMR, then reduced to 15mg,,, I think the symptoms didn't last for so long! Waiting on my rheumatologist to give the ok for a further reduction!
All the very best! Andrea
Did you go from every day of the old dose to every day new dose straight off? The reduction described in the replies section this thread was designed to avoid these problems:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
The body finds it difficult to adjust to a different dose - this scheme introduces it one day at a time so the body gets usesd to it slowly.
But eventually you will get to a dose that is too low to manage the symptoms - the reductions is not a relentless reduction to zero - you are looking for the lowest dose that works to manage the symptoms. You may have got there - not this dose, but the previous one.
So is this every other day the new dose?
I just upped my dose to 10 and will see how that goes and try the every other day for a time this is really trial and error not easy as the doc made it seem.I really don't have alot of faith in him might be better off with my GP
Carol - no not a fast as that or you will be in trouble!
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose - can stop here!
___________________________________________
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose - or here!
___________________________________________
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
Thanks a lot makes more sense than what my doctor said he just wants to hurry and get me off of it. will try this for sure I am really shocked at how a seemingly tiny change can cause havoc with your system.I am so blessed that there are those who have been through this and are willing to share information as you probably guessed i am new to this and especially to reduction you are my hero Oregonjohn
Didn't you mean "can START here" opposite 1 day new, 4 days old? That's what I meant originally at least - I start particularly slowly because I do suffer for the first few times but lots of people start at the 4 day old level with no problems.
Starting at the alternate days old/new is where the other scheme that is doing the rounds starts - but it is too much for me to go straight to alternating the dose.
And you can stop at any point - wherever it is you are saving a few mgs.
Hurrying to get off pred is the one thing you CANNOT do in PMR or GCA. Top experts say that even being conservative you need to look at at least 2 years use of pred and for well over half the patients it will take much longer than that - some textbooks say an average of 5 years. It does seem to go more smoothly and, as a result, faster if you use this slow reduction pattern because there are no flares forcing a return to a higher dose and starting over again - as is explained in that link I gave you, when you reduce in too large a step you induce something called "steroid withdrawal rheumatism" but you often can't tell whether it is that or the PMR returning. The bigger the step the longer it takes to settle down - by which time the patient or doctor have assumed it is a flare and gone back on themselves. Walking from one end of the street to the other is quick if you always keep going forward - but if you keep doubling back it takes much longer.
Must get my eyes sortede and check before hitting enter:
1 day new dose, 6 days old dose
2 day new dose, 5 days old dose
3 day new dose, 4 days old dose - can stop here!
___________________________________________
4 day new dose, 3 days old dose
5 day new dose, 2 days old dose
6 day new dose, 1 day old dose - or here!
Sorry!!
Was doing a cut and paste from the first line and forgot to change the first number after pasting - hope I've not confused anyone - thanks Eileen!!