i know I have only been on Pred since March this year, what I would like to know is has anyone completely come of pred and PMR is now under control without drugs.
I know of two people in my local area who have been PMR free for about 2/3 years now but I don't know how long they were on steroids. It wasn't lengthy.
I should have said we are all different and as others would say it's not a race to zero. It's also a game of patience. I am at 3mgs after a bit over 2 years but I don't take it for granted that I'll necessarily reach zero.
PMR goes into remission and this allows us to stop taking pred. Occasionally for some it may raise its ugly head again, but one always hopes this will not happen. It seems people who try to rush off pred can have more problems than those who reduce slowly and methodically.
I have been off pred for over 8 years and have had no pmr-related . I had GCA and pmr. The trick is to taper very slowly. Look at the DSNS method in the information. If you go too fast, you are bound to have a flareup and the total time will be longer than with slow tapering. You will also have some troublesome periods with bad aches instead of staying at the dose that manages your pmr.
I've had PMR twice. 53 and 63. In remission now, undiagnosed the first time, pred the second. 18 months each. Currently 2 years symptom free. Gained 3 stone, or about 45 lbs. Last bout. I'm 67 years old.
I'm just wondering - do you mean you want to come off Pred because you dislike taking it and manage PMR without drugs? Or do you mean what the people who have answered you think which is about slow reducing?
If you go here:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
you will find a link to the Zero pred thread - almost at the bottom. There are stories from a few people there. The NE support charity site has stories from various members - most of them are now off pred. There are a few people on here - but most people who are off pred are busy getting on with life. Remember that most people on the forums are the ones with problems seeking help.
I know I can't stop taking pred as the systems are still there. I have very stiff shoulders. it took six months before I was diagnosed with PMR, I was told by my GP I had sciatica, it was a physio that said that was not what I had. Back to GP who referred me to a Rhmy, who diagnosed PMR. I am disliking the side affects which I know affects most on this forum. I was interested to know if there is light at the end of the tunnel with pred.
I have been off Pred. for more than four years after two episodes of PMR, five years apart, eight years in all.
At the time it seems endless and progress is rarely a smooth line curve. Be patient with yourself. ( Anyone who knows me would hope I had my fingers crossed as I gave that advice ). My story is not unusual.
I was also going for physio for about six weeks then diagnosed with PMR last August was put on 15mg currently on 5mg decreasing slowly by 1mg per month now so far so good no flair ups fingers crossed this does take time for sure
Eileen your advice please. Down to 2mg and have stayed there for some time, have had a lot of pain in shoulders and had physio but it didn't help he thought it might be a flare. I have increased the steroids to 7mg and am almost pain free. Should I make this a short stay on 7mg or go back to the very slow method. I am 7 years into pmr now and feel so disappointed that I have had to increase the pred again.
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Hi Margaret , I was on pred for 4 yrs and finally very slowly had been off it 6 weeks 👍I still have a little morning stiffness and some times I have to take my time at getting out of a chair ! BUT I can put up with it , it's bearable , so keep positive and don't over do things and you also will be off pred one day xx❤️
I have to say that sometimes I think the cure is worse than the disease!
You know that PMR symptoms can be caused by other sicknesses, and as the other sickness resolves the PMR does too. I think those are the people who have short term non-recurring PMR. The rest of us have a disease of unknown etiology, and our recovery can take more than two years, and sometimes never.
Margaret, there is light at the end of the tunnel, and it's not a train. It's daylight!
Carolyn, when I have that thought I just remember what life was like pre-pred, and I count my blessings! But I am now down to a low dose, so it's good!
margaret89358, Phredsone is not an answer it a maintenance solution to get PMR undercontrol. I worked all winter as a ski instructor, PMR free, came down with a sore throat and a flare several weeks after the season ended. At one point my wife had to roll me in a wheelchair to my doctor's appointment. Once I got on proper dose of Phed, started getting active again yesterday I walked over 18,000 steps, I working hard to get back in shape for the up coming ski season. Do I like the side effects of Pred, no it raise hell with my Diabetes, mouth burns, my tongue burns, my hands and feet are on fire and I am ready to jump out of my skin. I a mess, but I am getting better with the help of the Pred controlling the PMR. I love to get off tomorrow, but will taper slowly always PMR pain free. Looking forward with a smile on my face! Thanks too many of the help on the forum. 🙂
Haing had 5 years without pred before diagnosis - I really can't agree! Pred even with side effects was greatly preferable to constant pain and immobility.
Though I suspect your view does depend on how severe your symptoms were and how long you had had them.
There is absolutely no virtue in being on too low a dose that allows you to have symptoms. If you are almost pain-free at 7mg then that is a sign your symptoms were almost certainly PMR - and I think you would be better using DSNS again - the 2mg was not enough but you don't REALLY know what is. If it were me I might try jumping back to 5mg fairly soon to see if that is still enough but from there it would be DSNS all the way.
I have had PMR for 13 years and counting, in the meantime I have had several flares of disease activity both without and with pred. Last year I had to go back to 15mg and am just back to 7mg, trying 6mg. I know it is disappointing - but personally I'd rather be able to live than be on too low a dose. 7mg and below are low doses, the same sort of amount your body is making naturally day by day - or, if it is already present, only topping up to.