Posted , 7 users are following.
I try to read all the posts, but cannot recall reading about a correlation between the amount of pain, fatigue you have and how that relates to your ability to taper. If you are not having any pain or fatigue does that mean you should taper? Thanks.
1 like, 10 replies
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pat38625 kathy67492
Posted
Oregonjohn-UK kathy67492
Posted
MrsO-UK_Surrey kathy67492
Posted
Upon commencing steroids, most of us can expect to experience around a 70% reduction in our pain within a few days, or even hours. A few very lucky people then go on to have a pain-free journey down through the doses, but I repeat "a very few".
I always experienced a certain amount of pain/stiffness down through the doses but was very lucky in being able to use repeat blood tests as a guide as they always corresponded with how I felt: if my pain worsened, my blood tests would show an increase in inflammation.
As to whether "If you are not having any pain or fatigue does that mean you should taper?", provided you have remained on the starting dose for a good 4-6 weeks and 4 weeks or so at each following reduced dose, then a reduction will hopefully prove successful. Always bear in mind that we are all different in the way our body reacts to both PMR and the steroids, so it's very much a case of finding what works for us. The longer you are on steroids, the more familiar you will get with how and when to reduce, remembering that a slowly slowly approach is the best.
As for the fatigue, that is caused by both the inflammation in our bodies and the steroids, and is something that most of us experience for a very long time, although it does improve as we get to the lower steroid doses.
kathy67492 MrsO-UK_Surrey
Posted
EileenH kathy67492
Posted
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find further links to a lot of information and a couple of other forums.
In posts 4 and 5 is the slow reduction programme Charlie referred to.
However well you managed to get to on your starting dose of pred is the aim in many ways. You use that top dose to control the inflammation - and then you are looking for the lowest dose that will do that. You may have had more energy at 15mg because of the pred but 15mg is a bit high to stay at. Don't quite get why anyone would add Medrol on top of prednisone - they are both corticosteroids with similar lengths of action, why not just tell you to use more prednisone for the length of the taper?
Basically, when you feel reasonably well on a dose after a month you can contemplate trying another reduction - A SMALL ONE!!!!! Half a mg at a time is fine! Maximum of 1mg, the lower the starting dose the slower you need to go - see the reduction scheme.
charlie44644 kathy67492
Posted
Follow one of the already established programs for tapering your prednisone. I do not have the link handy. Hopefully another writer will provide it or I will later.
Accept the fact that this is at best an 18-24 month program.
I am at 4 months and feel pretty good. Doing my usual excercise.Still have an occasional weird feeling. Started @ 20mg, am @ 12.5 mg and going for 10mg. @ the end of Feb. where I plan to stay for 6 months.
Charlie44644
wendy5050 kathy67492
Posted
MrsO-UK_Surrey wendy5050
Posted
Mrs.Mac-Canada kathy67492
Posted
this is getting to sound like a broken record but truly take the time your body needs to adjust to each pred. dose before decreasing.
I have been on pred. for 2 years now and I'm experiencing my 2nd flare from trying to reduce my dose from the starting dose of 20mg. This second one has been much worse and I have had to go to 10mg from 4mg. After being on 4mg for 2 months and feeling good I started to reduce to 3.5mg using the "very slow, almost stop" method. I got to the third week and the pain and stiffness just kept getting worse. I increased back to 4mg then 5mg and since my symptoms showed no sign of improvement and were actually getting worse I caved in and went up to 10mg. I've been on 10mg for 6 days now and although I'm much better I'm still having stiffness, fatigue and muscle weakness I didn't have at 4mg. I'm going to stay at 10mg for as long as it takes to feel my body is ready for a decrease.
None of us like taking prednisone but it is the ONLY thing that allows us to have any quality of life. If we can manage to get to a low dose that will manage our symptoms the side effects are minimized and we just have to wait for the PMR to burn itself out.
Sorry to go on so long with my story but I have found it helpful knowing others experiences.
I hope you find what works best for you soon.
Hugs, Diana
charlie44644 kathy67492
Posted
I do not know how long you have been on your current dose, but if it has been 4-6 weeks and you are feeling good it should be a good time to do a modest taper as a number of other responders have suggested.
Charlie44644