split dose

It is only my second day on 10mg , by this time of the day I'm usually aching , but tonight it feels better.

so fingers crossed hope you ar well.😌

he is having trouble with his eyes and he is taking pred six times a day in both eyes and has to reduce, he now owns up and said I see what you mean about reducing. Bless him

Hi MIchdonn many thanks ,when I tried a higher dose when I first had pmr it did not agree with me, but now I am trying to splint the dose and it seems to agree with me, and I know it's only two days since I started I have noticed some improvement .

so fingers crossed

In 8 months, I have tapered from 24 mg (17/7 split) down to 7 mg (4/3 split).  Below 20 mg prednisolone, I have been PMR symptom-free.  For instance, two weeks ago I snow-skied 7 hours a day—downhill and cross-country—for 6 days in a row.  Not bad at nearly 69-years-old.

By 20 mg I had found, by experiment, that a higher evening dose (say 13/7) eliminated all day-time PMR pain. By 10 mg, I began reducing the evening dose and I soon hope to eliminate it entirely.  The past two months, I have been tapering at almost 1.5 mg a month but I will be more cautious from now on.  

I think day-time PMR pain calls for a split with a higher evening dose.  Best of luck.

Hi Joydeck, I was very interested to read about the amount of exercise you have recently done. I was recently diagnosed with PMR, did 4 weeks at 15mg pred, was put down to 10mg which I put up with for approx 3 weeks before asking to go up to 12.5 due to slight flare. Am still at 12.5 about 2 and half weeks later and have just completed a cycle ride of 45 miles a day for 4 consecutive days. I returned to Pilates, Zumba and cycle training about 1 to 2 weeks post diagnosis, gingerly at first but then fairly full on. At 63yrs, I like to stay active. My own finding is that I am worse (but very very mild symptoms) when I don't exercise than when I do. Are you finding the same?

Hi Ibh, as for strenuous exercise, we are much in the minority on this site. 

Even before starting pred, necessarily-limited exercise seemed to do no harm.  My initial dose of pred, mid October 2017, was inadequate, but I was able to resume heavy exercise once on a 24 mg split-dose early in November.  I felt no worse for the exercise: tennis (3 days a week), badminton, running, cycling, aerobics (Body Attack and CX Works), gym, and in-line skating.

Since Christmas, I have been as fit and active as before PMR, with no ill-effects whatsoever.  The only change is the pred induced, purple blotches under the skin from minor scrapes and impacts.  And slower wound healing.

Am I worse when I don't exercise?  I've never stopped to find out!  As for your very mild symptoms, you might consider slightly more pred or a split dose.  

I think it depends on your level of fitness before starting pred.  I was able to immediately start doing things I'd always done prior to becoming ill.  I'm not athletic, but have always been active.  However as time has gone by I have found myself becoming weaker in many ways and I can only blame pred as I was undiagnosed with PMR for over a year before I took pred.  So it may not be PMR which makes our muscles intolerant of vigorous exercise, especially if you've been used to it before, but effects which pred can have on our muscles.  

"So it may not be PMR which makes our muscles intolerant of vigorous exercise, especially if you've been used to it before, but effects which pred can have on our muscles. "

You do have to think of both or either/or - I know that PMR had the effect on me as I had 5 years without pred to find out! One form of corticosteroid caused muscle wasting - the others haven't But what I am very aware of is loss of fitness - over last winter was particularly bad as it was too much snow or icy to walk safely for several months.

The winter I was in so much pain I couldn't turn my head enough to see out the back window when I was trying to park the car I was able to shovel snow without harm - and it was one of the worst winters we have ever had here.  In fact it puzzled me at the time that I was able to perform actions like snow shovelling when I was having trouble getting out of bed or standing up from a chair!  The following year when I'd been on pred for a while was when I started to develop the rotator cuff problems, which still haven't really healed, both arms bother me from time to time.  I am weaker now than I was with untreated PMR.  So, we are all different!

I certainly had no wish to ski the month before starting on pred.  Untreated PMR is crippling.

Getting older doesn't help but, so far, I'm fine except for asymptomatic PMR and Atrial Fibrillation.  Besides, ski resort entry is free and in a couple of years lift ticket will be too.

Two weeks later, during another three days skiing, my hips started to feel strange, which I then attributed to aggressive angulation!  No effect on my skiing though.  But driving home from the mountain, hips and arms became unusually fatigued with bilateral pain. 

Three increasingly dreadful weeks passed before I visited an osteopath and, a week or so later, I had a tentative diagnosis and began pred the same day, to almost immediate relief. 

Finding the right split-dose of pred, in the weeks that followed was tricky. 

What I couldn't do was ski 2 days in a row at the start of the season - I had to build up very slowly and consecutive days skiing didn't happen until about February. And I had to stick to repeated shorter runs - the rest on the lift was an essential!

I was very active before PMR and pred: hiking and going to the gym. When I was put on pred I was very active in the beginning because I was pain free. The problem I had was trying an old Pilates exercise with the magic circle between my knees. I hadn't done that in a long time. Well I tore a hip muscle without feeling it right away. I couldn't walk without limping badly. Then I became deconditioned. I felt like jello. It took months for it to improve and I still have issues with that hip. So it's easy to injure oneself unwittingly on pred. 

can anything be done about muscle wasting and what do you know about LDN?

thanks

jeannar

I know very little about LDN - it comes up every so often, people try it but no-one has come back to the forum yet saying it worked. It promises such a lot - and that is usually a sign that it is pie in the sky. Certainly a top PMR expert in the UK doesn't rate it and she is pretty broadminded about innovation.

Muscle wasting can be helped by targetted physio exercises and that is something we should be offered right from the start - we aren't of course. In my case it was only one form of corticosteroid, methyl prednisolone, and it hasn't happened with either prednisolone or prednisone so one thing to try might be switching to another form of pred. Some of it is also due to reduced activity - so making sure you walk regularly is important, even if you can only manage 5 minutes very slowly at first you can build up what you do bit by bit and get to be able to do far more. Ask Michdonn - he was in a wheelchair at Easter last year until I told him to just start walking!

I'm beginning to realise, the more I read on this forum, that I have probably been extremely lucky to get a very fast diagnosis. The onset of my PMR was swift and I would say that within 2 to 3 weeks of symptoms I was started on pred. I cannot imagine being a year without a diagnosis!! I see the rheumatologist next week for the first time. I'm not sure what to expect over and above what my GP is doing. I'm keeping my fingers crossed for an "uneventful" PMR journey.