PMR. On large dose of Prednisdone. Trying to lower dose.
Posted , 9 users are following.
I diagnosed my PMR after many flares. My GP did not know how to treat me when my Sed rate came back at 58. CRP in normal range. Called prescription of Prednisdone: 60 mg one week, 40 next week, 20 following week. I knew that was not the way to treat it. 60 did not relieve symptoms , so I increased to 80. I know that was not the way to go but felt my GP didn't have a clue.
I have now been to a rheumatologist who changed my prescription to Methylprenisdone 16 mg tablets. I was instructed to take 48 mg. daily. I had reduced my 80 mg to 75mg before seeing him. I felt that was too fast. I started at 54 mg. daily. Was down to 40 but went back 48 mg.
My question: what is the difference in regular Prednisdone and Methylprenisdone? Has anybody taken both and noticed any difference except Methylprenisdone is very much more expensive?
By the way my "rhemey" thinks PMR last for 2 years only and since I have had this since sometime 2014. I should be phasing out of this. What say you all? From what I read I don't think he's got a clue either. I feel sometime I'm surrounded be idiots. Might be time to find a new rhumatologist.
I'll give this guy another visit as scheduled.
1 like, 28 replies
panamabob judy20492
Posted
I am just astonished that you probably had to pay a doctor for such dangerous advice.
Thank God for the NHS.
faye______00403 judy20492
Posted
about a hear and a half. I have a friend (old high school chum) that has been on pred for 5 years with brief breaks when she went off only to have to go back on again. I'm with some who think that we just hope for something close to remission. Maybe have to take some hopefully
low dose for years. I also am across the big pond in FL. I trust
my primary guy more than the rheumy he first sent me to. I think
my doc knows a little more because he treated an aunt in Canada
that had PMR and managed to get off pred for good. Hope he can
work that magic with me....
judy20492 faye______00403
Posted
EileenH faye______00403
Posted
What I can say is that if you are allowed to use pred properly to manage the symptoms it is possible to have a decent quality of life - at present I'm living a pretty normal life for someone in their mid-60s. I have next to no pain and I feel well. I've just done a 3 week trip to China with no problems at all - doing a full day sightseeing along with the others. I was home for a week and set off for the UK and drove 2,700 miles in 16 days. No problems at all there either. Now I'm just waiting for appointments to be dispensed with and weather forecast to look promising to head of for a proper holiday...
faye______00403 judy20492
Posted
My Primary is part of a walk in clinic and hard to get in to see.
An appt takes about 3-4 weeks or you can go as walk-in and
have to wait a looonnnggg time. I've had problems just trying
to find someone that has PMR that I could talk to about it. My doc
has one guy that has the GCA which I hope to God I don't
get. Most people that you ask if they've ever heard of PMR
say no. I had never heard of it until it showed up on my doorstep.