I am a new pmr patient (one week), taking 20 mg. in four separate 5 mg. doses each day. It has given substantial pain relief, to be sure, and I think I would like to go on living with a bit of pain, rather than having the doctor try to lower the dose for more pain relief, which seems to be standard.
Is lowering the dose quickly, more and more--is that standard operating procedure? I can tolerate the level of pain I have now, but before I got the pred, it was unbearable, for sure.
Any thoughts would be appreciated...................
Barbara, I have replied to your post on the other thread about the need to take your steroids all together in one dose as early in the day as possible to obtain the maximum benefit.
You can expect around a 70% improvement in your pain levels within a very short time of commencing steroids. It isn't lowering the dose that gives more pain relief. On the contrary, the starting dose should be maintained for several weeks at least to ensure that the inflammation is under control . Then any reductions in dose should be done gradually and in small steps, so that you can quickly spot if the symptoms are returning and increase straight back to the previous dose. However, if you taper very slowly you are less likely to experience a flare.
Hi Barbara, welcome to this forum and yet truth to be told none of want to be here. It's a great site where you get loads of support and information and advice. I am a newbie, just diagnosed 12th November and was on 20mg of pred and just reduced down to 17.5 last Saturday.
At first I couldn't even work out how to use this website. Brain fog I guess. I was told by Consultant last Thursday to reduce down to 15mg of pred and I came on here for advice, and it was suggested (also I felt it may be too big of a reduction for me) but I already had an appointment with gp the next day. I told her I wanted to reduce by 2.5 and not 5mg it was too much.
It seems to be that the slower you reduce, the better the results. Someone with far more experience than me will be along soon, so good luck and take it easy.
Thanks for the welcome. Yes, I too have lots to learn from this forum and elsewhere.
My question is, would it be a legitimate thing to do to just remain where I am (20 mg. in four doses) indefinitely, with some accompanying pain, until--possibly--the pain either goes away or increases so terribly that I agree to raising the Pred level.
I think I would rather tolerate a certain level of pain than take more Pred. trying to have no pain at all.
Thanks for any and all advice--
Not at all Barbara, you will find your sanity here lol, it's just all so much at the beginning. I can only speak for myself and I do not have a medical background. At PMRs worst and undiagnosed on a scale of 0 to 10 how bad was my pain, my answer was 12 out of 10. I could not go back to that type of pain. I would say I was one step away from a wheelchair. I had lost my mobility, every movement was excruiting and after taking my 20mg pred all at the one time. My gp said I was to take them all together, within a period of hours the pain was reduced greatly and after a couple of days a lot better. I still have twinges in my thigh muscles when driving or when I am getting showered and dressed but I can live with this. I am waiting for a first appointment with Rheumy the Consultant I seen last week was Endocrinology and they are arranging appt. I am willing to taper as slowly as possible and everyone is different but stick around this forum and you will get loads of info. Take care.
Dear Pat
Thanks for telling me about yourself! As for me, I needed to scream when getting into or (mostly) out of bed. That is gone, thank the good Lord. Some slight pain in the arms remains, but I can cope with that easily!
Best, Barbara
P.S. Good luck with the rheumy appointment--
I was started on 15 mg beginning of November .Aftet blood test reduced 1 mg 5 weeks later . My pain is , was mainly in shoulders neck arms and face . After next blood test reduced 1 mg again .Was told to reduce again which I did 2 weeks ago .Such severe pain gradually came back over a week , which was so bad went back to docs yesterday Now she was surprised I had been reduced the 2nd time because there wasn't much of a drop in my test results previously So have now gone back up again 1 mg . Needless to say it was a different doctor I saw . But from what I have learnt from this site ,you take all med in one go each morning . Reduce dose very slowly ,after blood tests have shown improvement .Do it at your pace and hope you here a comment from Elaine who has obviously gone into PMR in a lot of depth and has learnt and gives sensible advice .Hang in there ,hopefully in a couple or three years time we will be in control of this pain in the neck problem . No pun meant
Sorry, I was a bit confused by your first post where you say "lower dose to get more pain relief". This is a starting dose to eliminate as much inflammation as possible - it isn't a cure, it isn't 100% guaranteed pain relief either.
I'll try to answer this one:
The 20mg - which to get the best anti-inflammatory effect should be taken in one dose in the early morning as MrsO has said, is the start. It is a dose that works for the majority of patients to relieve that inflammation and you remain there for 4 to 6 weeks until the symptoms are relieved as much as it looks they will be. Then you slowly reduce the dose in small amounts to find the lowest dose that will manage the symptoms to an extent you get a decent quality of life whilst suffering the fewest side effects due to the pred. The higher the long term dose, the more side effects there may be. Pred has 82 documented side effects, some minor, some very nasty. Some people have next to none, others get a lot, sometimes even enough to put up with PMR rather than take it. At present it is the only reliable drug to manage PMR symptoms although doctors seem to be trying out drugs used in other inflammatory diseases, mostly unsuccessfully inthe long run.
Nothing cures PMR - it is due to an autoimmune disorder that makes your body's immune system attack your body in error and that will run its course and, eventually, burn out and it will go into remission. In some people it happens in a couple of years, in some people it lasts much longer, I have had it for 10 years and it is still there if I reduce the pred further than where I am now at 4mg.
It is very unlikely that any doctor would agree to let you stay at 20mg indefinitely and wouldn't encourage you to raise the dose any further - it should be all downhill with regard to dose from here. It's like a springclean followed by a daily wipeover ...
Hi Barbara, Sorry to have to say welcome but hopefully tou will find this forum your saviour. I have had PMR since last May and still rely on the forum for assistance as desperation makes you want to reduce asap. Only your body can tell you how much pain you are in so go with it. If you need to up the dose you have to do it but I realise how difficult this can be. Good luck, Dave (tavidu)
Hi Barbara. Sorry to say it but welcome, this is a club that no one wants to be in. I have had PMR since last May and it has been a sort of up and down time as far as preds are concerned. I too am trying to reduce due to Hives (a skin complaint), which can be caused by preds but also cured by preds. All I can advise is to listen to your body, if you are in pain you may need to up your dose slightly to compensate then lower gradually. Good luck and hopefully with the help of this forum we can all get thru this. Dave (tavidu)
Hi Barbara, not a problem me telling you about myself. It can be reassuring that someone else has or is going through the same thing. The correct way to take pred is all at the one time. Did you get or take calcium and vitamen D, all one tablet prescribed by your docter. If you did, don't take it at the same time as pred. Also don't take any indigestion remedies 2 hours before or after taking pred. Keep logging in when you can and you will find out so much about PMR and pred. Good luck on your journey.
Thanks, Eileen! Q: "It is very unlikely that any doctor would agree to let you stay at 20 mg indefinitely. . . ." HOW COME? Just curious--
At 20 mg. after one week, I still have a bit of pain, esp. in arms, but it is tolerable. It does not destroy my quality of life that much, so I am reasonably content.
P.S. Who says the correct way is to take Pred all at once? If true, I wonder why my rheumy has me take the 20 mg. in four 5 mg. pills during the day/evening--???
Hello Barbara, you really are a newbie! And what you have read today is a lot to take in but this really is the place to come if you're not sure of things.
you sound as if very little has been explained to you, an experience all to sadly appears yo pretty much the norm.
I can't add to what has already been written but I was left on each dose for 6 weeks until I got yo 10 mgs then left on that for 6 months. And I understand that's the dose whereby it is recommended to be on for anything up to a year.
when members advise you on the very slow taper it's for a reason, it works better and there's less chance if a flare up. Good luck, christina
Dear tavidu and all,
I guess I've got people confused. The story is: I don't want to up the dose, rather I'm wondering if I can just stay on it while I experience some tolerable pain--in other words, not rush, rush to lower the Pred.
No one else seems to be doing this, am I right?
Best to all, Barbara
Oh, gosh! If possible, I DON'T WANT to taper--I just want to stay where I am and put up with the residual pain I have. In other words, as we say in the south of America, "Just leave it be!" Actually, last week was my first visit to the rheumy, so I am far from an expert in all this, obviously--just asking an occasional question of you good people.
Of course if there's a taper it should be a slow taper, that I realize--but at the moment I don't want any taper, so I'm not sure why people write me about it--?
Thanks for writing, Christina--
Barbara
Sorry to butt in but that's right. See my reply below but slowly, slowly does it no matter what your clinicians say. I was on 15 mgs for 6 weeks, 12.5 for 6 weeks, then 10 mgs for 6 months, then 9 mgs for six weeks. And my Dr was great I have blood tests every 3 months and no matter what they say - well, after being on preds they've always been good, my Dr always asks me "but, how do you feel" lucky for me throughout these stages I was fine so reduced. Also read the PMR Bristol plan, if you put that into your browser bar the document should come up, and see that the gold star treatment really is slow. Christina
Also Barbara, you've only been on medication for 1 week so you will still be experiencing residual pain. Give it another couple of weeks and hopefully that will die down some more, then after a few weeks more as the prednisone gets to work reducing the inflamation that causes the pain then hopefully you'll get a little less pain but even now I still get the odd twinge especially if I overdo things, then all that's needed is a good rest until the pain dies down again. Christina
Thanks, Christina--I keep saying that my pain is entirely within acceptable limits to me, so I am not particularly searching to have less, although it would be a nice surprise. I am quite content as it is, just accumulating more knowledge, thanks to you and everybody--
Barbara