Pain returns dose increased
Posted , 8 users are following.
Hi everyone, Well after getting down to 10 mil of pred and staying for about a week the pain in my left groin and thigh was so bad and I felt the neck and shoulder stiffness beginning to come back that I had to call my Rheumy today.
He told me to go back to where I felt it was tolerable which was at 12.5 so I did and hoping it helps because I was afraid I would get as bad as when first diagnosed. I was totally pain free at 20 mil. back in Feb.
Ive only been the pred since Feb of this year and thinking maybe my Dr started the taper to soon.
My question is if anyone takes their full dose all at once since I take 10 in am and rest in pm and it has been working. I was told that its best this way since the pred wear soff after a certain amount of hours but not sure if this is accurate.
Thank you,
Sharon
0 likes, 19 replies
FlipDover_Aust sharon35553
Posted
Hi Sharon, how fast are you tapering? If you have dropped from 12.5mg to 10mg it's probably no surprise the pain is back. That's a pretty big drop. You can get away with that size drop at the higher doses, but once you hit around 15mg you really should slow down to 1mg or less reductions. You might also find that 12.5mg is where the pred is able to contain your inflammation... it's only 'early days' for you yet.
What you have to remember is that the goal is to get to the lowest possible dose, not to stop taking pred - you'll need to take it for as long as you have active PMR. So it doesn't matter when you start or stop the reduction, it's how you go about it and recognising when you need to slow, stop or go back up.
Most people take their dose as a single dose, first thing in the morning. This blows away the inflammation that develops through the night (something about something releasing something at about 4am - I'm no expert!). So a single 'larger' dose in the morning will give you relief for the rest of the day, and then it starts all over again.
Some people find that splitting the dose works for them as they get some relief during the night and the mornings aren't so bad. It's all trial and error and only you will know what works for you.
sharon35553 FlipDover_Aust
Posted
My Dr. had me tapering by 2.5 every month which I started in July. I was ok and then on August 14th I tapered another 2.5 which left me at the 10 mil and then all the pains began again. Yesterday I went back to the 12.5 and going to see what today and tomorrow bring. I agree with you that it was too high of a taper and will stay here for a while.
Do you think I can just try to take the total dose at once in the am, or will it mess me up? Also if the single dose doesnt work for me is it ok to go back to the split dose, I hate fooling around with meds like this an making my body readjust to different things.
Thank you so much for your input I sincerely appreciate all the advice I receive here.
Sharon
maid_mariane sharon35553
Posted
I've now comming up to 1yr on prednisone. Started at 20mg and now tappering to 16mg. I'm slower than most because i feel the pmr return if i drop to much to fast and i stabalize for aprox. 3 weeks before i drop again.
I split my dose because my pains returned in the afternoon so i take 5mg at 3pm. and this works well for me and rumi agrees.
I personally feel you have dropped way to fast no wonder your not well.
Take care Mariane
FlipDover_Aust sharon35553
Posted
All you can do is try it Sharon. It will either work or it won't!
sharon35553 maid_mariane
Posted
I agree and am now back at 12.5 and hoping it works. Staying here for a while then will try to taper by 1 mil maybe every 4 or 6 weeks.
Thanks,
Sharon
maurice1962 sharon35553
Posted
Hi sharon , i was diagnosed in april and started 25 mgs of pred for about 2 weeks then 20 mgs up until last week . Ive gone down to 16 mgs which was a bit of a risk because they say it's best to reduce only by 10% and Ive tried 20% . So far so good , my right hip gives me bother when i try to hope in the car but otherwise bearable . I started back at work at the meatworks in a boning room so im on the knives for 8 hrs a day and so far so good. Im stiff as in the morn but i was stiff as even when i wasnt or unable to work👍i split my dosage so i take 8mgs in morn and 12 hrs later take another 8💪💪. I personally think u have come down to 10 mgs to early but like all of us here i wish u well 👏👏👏
sharon35553 maurice1962
Posted
I wish you well also!
Thanks,
Sharon
Anhaga sharon35553
Posted
I think splitting or not splitting depends on individuals. Some people, like myself, do fine with a single dose at breakfast time. In fact I often feel very well when I get up after resting all night. Other people metabolise pred much more quickly and they find the effects don't carry them through the twenty four hours. They are the ones who like to split the dose. There are still other people who like to take the single dose in the wee small hours of the morning, like 2 am, with some yoghurt or something to protect the stomach, so that they awaken painfree, or alternatively find that a single evening dose works well for them, and does not affect their sleep. Only you can figure out which is the best option for you. But I can say that the standard method most people start with is a single dose after they've eaten something upon rising in the morning. Only if that doesn't work well do they try to find something more effective for them.
denisep911 Anhaga
Posted
Tastyron denisep911
Posted
All my rheumy has told me is that taking some in the evening will help sleepless nights. Haven't noticed any problems myself, well no more than usual.😀
sharon35553 Anhaga
Posted
Sharon
EileenH Tastyron
Posted
That's a new way round! Usually they have a fit if you take at night because it will keep you awake! It doesn't always - everyone is different.
EileenH denisep911
Posted
Taking it all at once is felt to reduce side effects because your body has longer without any pred present - you excrete it almost all within about 6 or 7 hours but the antiinflammatory effect lasts for much longer, 12-36 hours. Doesn't matter when you take it in that sense though.
The morning dosing is because a study showed there was more adrenal suppression if you took 5mg at night than if you took 15mg at 8am. So for patients on a short course of pred that dose help avoid adrenal suppression - however, we are on pred at above 10mg for so long there is bound to be adrenal suppression and so you might as well use the pred in the best way for you. Taking it all as early in the morning as possible (wake up, take it and settle down for another couple of hours) means it will have worked by the time you get up and mornings will be less uncomfortable. A single dose hits the inflammation harder so if it works for you is better, but in some people the effect wears off more quickly and a split dose works better for them.
sharon35553 EileenH
Posted
Hi Eileen thank you for all the info you provided here.
Would it be a problem if I go back to the single dose of 12.5 in the am and see it it works better, I was taking the single dose of 20 mil back in Feb when first diagnosed then switched to splitting the dose after a few weeks & have been on the split dose now for a few months and afraid to try something else, not sure if you can go back and forth. I have no trouble falling to sleep taking the 2.5 early evening but willing to try a single dose again to see if it works beterr.
Im staying at the 12.5 for a while and will then taper another 1 mil in a few weeks, the 10 mil was not working for me and tapering by 2.5 mil was way to much.
Sharon
EileenH sharon35553
Posted
Don't see why not - all that is really important is that you have the regimen that works best for you at the lowest dose you can manage well with. As long as you take the dose at some point in the day it shouldn't really matter when.
sharon35553 EileenH
Posted
Just returned from the Neuro Opthomologist and he is so up on everything Im reading here and agreed, I can try the single dose and if it doesnt work go back, he really agrees with all the info provided here....a great thing when your Dr says things positive like this.
Thank you,
Sharon
EileenH sharon35553
Posted