ignoring background muscle 'pain'
Posted , 11 users are following.
I am interested to know how much you all ignore, or not, the background discomfort? For me it is a continuous slight burning sensation in the back of thighs and upper arms which I ignore, (since coming down from 12mgs). The weekness and muscle stiffness is there too but again I just ignore it. Today my hands are tender and stiff, probably payback from gardening! As I see it a flare is something that would be a lot more painful than that and looking back I think I mistook over doing it for the much heralded 'flare' so putting my dose up a notch for a while. in retrospect the markers didn't alter significally. I think I read that you always up your dose to reduce all 'pain'...is that correct Eileen? Am I right in then thinking it's a 'dance' between reducing the steroids at the expence of a little discomfort but that this doesn't prolong the PMR?
(Diagnosed feb 2016, started at 40mgs now at 8mgs...just)
I would like to pass on that since getting the enteric coated pred, I have been able to get off Ranitidine, initially omeprazole, with no more indigestion which was quite severe before. So one cost offsets the other with fewer pills and side effects!
0 likes, 15 replies
constance.de Guest
Posted
You would be one of the really lucky ones if you could get rid of "all" pain whilst PMR is still active. You are new to the illness - time will tell. Some of us are still not completely pain free after 3/4/5 years! You have dropped your dose of Pred/Lodotra really really quickly - too quickly I would say.
However, good luck! Others will be along with suggestions soon. Take care and TAKE IT EASY!
Daniel1143 Guest
Posted
I would agree with Constance. Dropping 32 mg over 12 months is radically fast. It certainly has the potential to compound your problems or at least your Pain. By way of example, I've been dropping at a rate of about 1 mg a month, and slower when my body tells me. That puts you at three times faster than I'm tapering.
EileenH Guest
Posted
No - I think you have perhaps misunderstood a bit at least.
The starting dose will reduce the pain and stiffness considerably and you should stay there until your blood markers have fallen significantly, preferably to normal. (if they are raised). Your symptoms should be stable and as good as they are going to get. That is your yardstick: while reducing you are looking for the lowest dose that allows you to have the same result. As constance says - you would be one of the really lucky ones of you get rid of all pain. About a 70% global improvment from pre-pred is the minimum you are looking for and it may be better. Everyone is different.
You do, however, have to do your bit by pacing and not overdoing things. People who have to work often need a higher dose of pred to manage. But it is the symptoms that are king - not the markers. Some people find their markers never rise again while they are on pred - some people find their markers never rise again period!
A flare is a return of the symptoms you had at the beginning - and if you stay on the dose where they appeared the chances are they will get worse. Steroid withdrawal, which can be almost identical, will usually improve over a few weeks. As will sore muscles due to overdoing things. So when you have a return of any such symptoms a good way to work is to stay at the same dose for a month and see what happens.
Trying to manage on too low a dose won't lengthen the PMR but it won't speed up the process of it going away - that will happen when the PMR is ready. And trying to manage on slightly too low a dose that allows a return of symptoms has no virtue - you must have the benefits to outweigh the downsides of pred if you have any. I can't say I do.
EileenH
Posted
PS - Unlike the others, I think being down to 8mg after a year is OK providing you haven't got there and have problems. You were started on too high a dose for PMR anyway really, 20-25mg should have been plenty and so that forst 10-15mg reduction need never have been necessary and shouldn't have been any problem.
If you had some problems at 12 mg and they haven't got any worse - fair enough.
Guest EileenH
Posted
Hello all and thanks for your speedy replies.
was put up to 40 from 20 after first month as was thought to have a large vessel variant and 20mgs didn't do the job. Down quite quickly to 20 by last june so drop has been much slower since then. I notice my markers were pretty normal by july. I think I was lucky as diagnosed and on pred quickly.so perhaps that helped. I'm going dead slow now since 10mgs.
Dear Eileen, your explanations always so helpful and hope any newby's out there see this, understanding the difference between background 'pain' and flares is quite a challenge! I wonder if the fear of flares can make people even drop too slowly sometimes too ? I have certainly had side effects from pred.
Fear not though, I certainly don't intend to rush this, hopefully, last bit
EileenH Guest
Posted
Guest EileenH
Posted
thanks Eileen, I've definately taken all you say on board. I had very little info from the hosp team and I wonder where I would have been now without you and the forum !
mimi1950 EileenH
Posted
I always learn something new on here! I didn't know that 70%improvement in symptoms is the MINIMUM to expect. Also that people who work need higher doses of Prednisone to manage. This is where I got the bright idea that since i was and am recuperating from a broken pelvis, basically going from bed to couch to bed, it would be a great moment to start the tapering. I "scheduled" 1 mg a week which was still much slower than the instructions my rheumi gave me when he learned of my insufficiency fractures. But, hopefully its as you say, Eileen, that one shouldn't attempt to taper when out of one's natural habitat or routine and not that I've become resistant to pred. Ive tried two times to go below 16.25mg and both times, I've had symptoms like when I was at my worst before DX . I have promised myself not to get bullied into tapering faster than I should again. I thought it was ok to go faster when still in the double digits. I was determined not to yo-yo with pred....Just what I am doing!
Lindalee77 EileenH
Posted
Diagnosed the beginning of November. I learned a lot from this. I learned that I never have had a flare yet. What I have had are adjustments when I reduced. I actually feel lucky when I read most of these. Before I was diagnosed I was put on a steroid pack. I count barely put my socks on. I woke up the next day and could not believe that the pain was gone. I was lucky and diagnosed quickly, three or four weeks. I started at 10mg went to 12.5 for a while and I am on 7.5 now. I tried 7 but I was either too quick to go back to 7.5 or it just wasn't time. I do work and I am l earning to be kinder to myself. 7 will come soon enough. Thanks. Linda
EileenH mimi1950
Posted
Mimi - You would normally expect to be able to go faster at the higher doses - you would hope you are heading for a dose in single figures so there should be a good margin of error and I suspect (being kind) that is what the doctors expect. But whatever dose you are on, if you are under stress, it is never a good idea to try to reduce the dose more than VERY slowly and carefully. You are under 2 (at least) lots of stress - it will stir up the autoimmune part of the disease. And it is the activity of THAT that decides what dose of pred you can manage on.
Lindalee - absolutely. It isn't a race and you are currently well ahead of the curve.
mimi1950 EileenH
Posted
I remember months ago , feeling proud of myself when I told you not to worry about my having enough patience , I had plenty of that, I said...Boy! Was I dilusional! PMR has made me realize that Im actually quite the opposite...Im very IMpatient . I have never been in so much pain and discomfort for such long duration.I thought how wasteful I was being with the prednisone because I was basically lying on my back 24/7 .I found out the hard way that even if you don't have to move a muscle ,the symptoms of inflammation are almost imposible to manage without steroids..It's like someone else on one of our recent threads said, it's like having the flu all the time.
julian. Guest
Posted
as others have said I aim for stability.
if symptoms are tolerable and the same as yesterday and the day before and the day before (etc) then I'm happy.
if symptoms reducing then I could reduce the pred, though being impatient I probably already tried.
if symptoms getting worse each day then not enough pred so increase.
if I overdo things and the symptoms get worse then I have to slow down for a bit.
something changed last October. I overdid things, hands swollen and wrists painful/weak. Didn't subside, had to up pred from 3.5 to 5mg/day. Steadily improved. Just last week back down to 4.5mg/day. It didn't really feel like a flare, arms just a bit twingy, but it also needed some attention.
being a slow learner I went kayaking yesterday. About 5km at a steady pace. Felt easy, really enjoyable. This morning hands a bit swollen and painful, wrists a bit painful. Muscle pain, "sharp". Same as last time., though not quite so bad. I'll give it a couple of days to see if it subsides, if not a couple of days of higher pred and possibly trip to doc to check whether its something else.
but generally, if I'm stable I'm happy. Rate at which pmr symptoms are created is about the same rate at which pred reduces them.
Silver49 julian.
Posted
Guest julian.
Posted
Ah yes, the hands ! Mine were sore yesteday following a bit of gardening, I did wonder whether I was 'in for it' but happily all fine today. I do see what everyone says about pacing yourself. We are in effect doing the Hoaky Cokey with the pred V activity...and that's what it's all about !
thanks
julian. Guest
Posted
good news - after a couple of days I'm back to "normal". At least same background pain/stiffness as before kayaking, and seemingly stable.
Last October 3.5mg/day, greater overdoing things, and long struggle. This time 4.5mg.day, just one day kayaking then slow down, better outcome.