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.
Hi Kathy, I have no medical brackground so don't so am not able to answer your question. some of the long term ladies on the site are more qualified than myself. Good luck. Pat
Not always - the fatigue may/will persist. The lack of pain is a good indicator that you could start to reduce - but slowly! And if there is any major return (not just a niggle) then go back to original dose and leave for a few weeks and then try again. I have found that by gauging how I feel, and if I'm not under stress, or any other concern I wait and start reduction when the body is ready for it.
Kathy, if you are someone who had raised blood tests markers (ESR and CRP) at diagnosis then these, along with your symptoms, can be used as a guide as to whether or not to try a reduction.
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.
Thank you for your reply. I am always anxious to get off the prednisone!...but I had a real go-around last summer with a rash, a MEDROL pack, back to my regular prednisone...and got all screwed up...so I know we have to be patient. Appreciate being reminded on this forum!
If you are comfortable and have energy I think that says you have the inflammation under control which is good. I do not know where you are in the process. Everyone wants to rush to get rid of the prednisone. Don't !!
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
Yes I agree with 5Mrs0. I am reducing my steroids again after a relapse last year. I am now down to 7mg and my ESR has gone up from 1 to 20 this month so my GP is keeping me on 7mg for another month to see how my pain is. This happened before my relapse last time so even though its frustrating you have to go with it. My pain is in my shoulders, thighs and calf muscles and I am getting more tired now. So try and listen to your body and don't be in a hurry xx
If you follow this link
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.
Hi Kathy,
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
Wendy - wise GP, hang on to him! My wonderful rheumy kept me at the 5mg dose for 5/6 months following a flare at 3mgs necessitating an increase to 10mgs. Those adrenal glands need to start kicking in with their natural, pre-steroid production at around the 7.5 dose, so it's an oft sticking point whilst they are getting back up to speed - if they aren't producing enough natural steroid whilst the artifical steroid is being withdrawn, it's easy to understand why a flare can occur. I hope the longer stretch on 7mg is successful, but if the repeat blood tests don't show an improvement, don't hesitate to increase a little higher.
I see that Eileen has given you the links to the websites I referred to.
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