Pain
Posted , 10 users are following.
not sure what to do i was on predsione and my pain was so bad in my leg i thought it wasnt helping do i went down from 5mg to zero in two months the pain is the same i have arthritis polymyagia rheumatia and osteoporosis pain pain pain im also to the point of the wheel chair cuz i ca n hardly walk i take lyrica at night snd it is amaxing for my leg pain but nothing helps in the day i exercise pray take supplement accupunture not sure want else to do thinking the predisone created my extreme lege pain oh and yes i need tkr ahhhhhhh im a painful mess
0 likes, 10 replies
Anhaga Eimmarg
Posted
What dose of pred did you start at? And how rapidly did you taper?
Eimmarg Anhaga
Posted
5 mg then 3 then 2then 1pain remained the same
Anhaga Eimmarg
Posted
Five mg is usually much too low a start for treating PMR. Did you ever have relief of your pain? Did you stay at your starting dose at least a month or longer? Then the taper should be no more than 10% of the dose, so you should never have tapered by more than .5 mg if indeed 5 mg was enough in the first place, which it sounds like it wasn't. Fifteen mg is the usual starting dose and it could take around a year to taper to 5 depending how you respond to the treatment.
peggy_56092 Eimmarg
Posted
Sounds like you are having a flare from reducing prednisone too quickly. I had a flare at 7 mg and had to up pred to 15 mgs for a few days and then quickly reduce back to 7. I reduce 1/2 mg every two months and am now at 5 1/2. If PMR is still there it won't let you reduce without pain. ElaineH should be along to explain further. Pred controls the PMR inflammation/pain and if you aren't taking it . . .
Eimmarg
Posted
how long does a flaire last i asked my doc if i should go back on pred and he said im good and i sad really
EileenH Eimmarg
Posted
If you need a TKR that was probably the cause of your pain. To reduce from 5 to zero in 2 months is asking for a return of the PMR pain and may also have put you at risk of adrenal insufficiency problems.
The only thing that helps PMR pain is enough pred - even 1mg too low will result in a return of symptoms sooner or later. If, as we understand what you say, you started on 5mg that was never going to manage PMR unless you were exceptionally lucky. 15mg is the usual starting dose to clear out the inflammation before tapering slowly to find the right dose for you personally. You are unlikely to be able to mobilise after the TKR if the PMR problem is not addressed and you will remain in a wheelchair.
Eimmarg EileenH
Posted
scarey thanks for info im so uninformed the doc justvread bloodwork tell u your inflammed have pmr and when you say your still in pain they look at you blank this forum is amazing
judith87642 Eimmarg
Posted
I agree...Since I hate taking Prednisone, I decided to reduce it myself...Started on 20mg. and reduced it to 10mg...no pain...then 5mg. ..I have pain in the mornings for 4-5 hours..The good news is I'm pretty functional, especially after a hot bath...The bad news is that now I'm not getting better...I was impatient and didn't reduce it properly like (10,9,8,7,6,5,4,3,2,1) and stay on each dose for 2-4 weeks maybe...So I'm not going into remission...
Silver49 judith87642
Posted
Your body will only go in to remission when it is ready. I reduced by .5mgs when I reached 9mgs. I am now off Pred but I was just over 4 years before it went in to remission. I found it needed more than 2 weeks on the new dose at this stage. Interestingly, I reduced more quickly towards the end but I'd been stuck at 1.5 a year prior and had to go back up to 2. 5 so it doesn't follow a neat pattern. It's great to be off but as we reduce the small amount doesn't give any cause for concern. I think my one salvation was realising that patience is what I found most helpful.
EileenH judith87642
Posted
Not only will your body go into remission when it is ready - until that happens you need enough pred to manage the symptoms. That is the nearest to "getting better" you can have. The underlying cause of PMR lasts years, the median duration of pred management before achieving zero is 5.9 years. 40% of patients are still on a low dose of pred after 10 years.
No-one LIKES taking pred - but it is the only option to have a relatively pain-free life while waiting for the autoimmune side to burn out. And the only reason you stay on pred at each dose for a month is to be sure it is still enough to do the job and identify that dose as exactly as possible. Pred cures nothing, - it manages.