Pain returning and worse in am
Posted , 5 users are following.
Well havent been o here due to husbands illness but finally have some time to post. Have been diagnosed with both pmr/gca since last February, was started on 25 mil and have been tapered to 10 mil a day for the past few months. I have been taking 7&1/2 mil at 5am and 2&1/2 at 5pm. I started trying to take the morning dose a little later, 5:30 so maybe this is the problem but not sure. Developed really bad shoulder pain last few days and overall feeling achy all over but thank God no scalp or head pain which I'm always afraid of and looking for.
When I was on the 25 mil I was totally pain free within a day, a miracle, considering I couldnt walk, move my legs and my groin was so painful. The Rheumy tapered me with the slow method and even at 15 mil I was 95% better, then at 12 mil I was ok and tolerating this dose ok. I was also ok with the 10 mil until the past three days and this morning Im in agony. My back and shoulder are so painful and Im feeling stiff all over so thinking maybe I should go up to the 12 mil. I can get an appt if I need to within a few days but honestly every time I go the this Dr I have to pay $75.00 and all he does is either up the dose or lower it and he sees me for literally five minutes if that. He does do all my blood work every eight weeks or so but Im not due for any now.
Thank yuo for any advice & I'd like to wish everyone here a very Healthy and Happy holiday!
Sincerely,
Sharon
0 likes, 8 replies
EileenH sharon35553
Posted
You are not reducing relentlessly to zero - and to have been diagnosed with GCA, 25mg having been enough and down to this low after 9 months is amazing.
You have gone past the dose you are looking for: the lowest dose that manages your symptoms. I would say your troubles began at 15mg and then you should have either stuck there a bit longer or only tapered 1mg and waited to see if that was still enough. I suspect you need somewhere between 12 and 10, nearer 12 I'd say. That doesn't mean you won't get lower, it just means not yet.
if your doctor is happy to give you a script for the tablets and all he does is up or down the dose - you can do that! If 12mg is enough to get rid of the pain, stay there for at least a month - until the New Year and all the holiday nonsense is done!
You say you used "the slow method" - which one? How slowly?
sharon35553 EileenH
Posted
Hi Eileen,
My Dr tapered me by 2&1/2 mil increments, I was handling this ok. I did one dose in am, lower at pm, next day it was opposite if I remember correctly and stayed there for a week, then did another taper stayed another week until I was at the lower dose and then continued that does until now. I forget what this taper was called but he wrote it our for me so it was easy to follow and it did take about 4 weeks to get down to this 10 mil dose. I think Im going to start going back up the 2&1/2 to 12 mil but not sure if I should take the full 10 mil in am and the 2& 1/2 in pm. Most of the pain is during the day so I think maybe I should take the higher does in am, don't you? Then I will do as you say and remain at this dose for another month. Thank you so much!
EileenH sharon35553
Posted
When people split their dose, most of them do about 2/3 in the morning and the rest later in the day, what time varies as everyone is different. The new inflammation happens everyearly morning so it makes sense to take more then and later you just need enough to extend the antiinflammatory effect until the next dose is due.
From long experience on 3 different PMR forums, I don't think reducing 2.5mg in a month is slow! We think 1mg in a month, spread as you do, is more like it. We even have our own versions - one of which is in use in a clinical study in the north of England.
My feeling is that the way you are doing it is likely to miss the stage at which the dose is no longer enough to manage that early morning stiffness and pain. Once you get to the dose that is only just enough to combat the effect of those inflammatory substances, the next step down is enough to let them resurface - going 1mg at a time means you know much more exactly where the problem is. Now you really could need anywhere between 10 and 12.5mg. It doesn't mean you won't get lower - just not yet.
cheryl74384 sharon35553
Posted
sharon35553 cheryl74384
Posted
Hi Cheryl,
I've been at the 10 mil for a little over five weeks, tolerated some of the aches accepting that as I taper down it would not be as good as at the higher dose but the aches slowly started coming on after approxiately a week after beginning the lower dose, and has progressed, each day brought back more aches and now its to the point where I just want to feel better again.
cheryl74384 sharon35553
Posted
FlipDover_Aust cheryl74384
Posted
Cheryl, you have to remember that everyone is different and you are tapering your pred on the instructions of your Dr.
You are in the very early days, and haven't even got a proper diagnosis. Do as your Dr has asked so your recovery takes less time over the long term. As we've all said before, this is a long road for us all, you can't rush it.
EileenH cheryl74384
Posted
If it IS PMR (and that isn't certain) then you WILL have pain the morning - that is how PMR works. A new batch of the inflammatory substances is shed and that causes morning stiffness. It is the same for most forms of inflammatory arthritis in fact - morning pain and stiffness for more than an hour is one criterion for diagnosis. The later in the morning you take your pred the longer it takes to go away. For many people it can take until after lunch even if they take their pred a 6am.
As Flip says - everyone is different and you CANNOT go by what happens to others, especially when even your rheumy hasn't any idea yet. It could be something totally different. Give her a chance - and let her look at everything that is significant. That doesn't include adrenal function at this point - vit D maybe, but she does know what to look at.