Realistic Expectations from Pred

That's very helpful Michdonn - I'm certainly learning how different we all are, not to give up too soon and experiment a bit. It's getting to know the way your own body works in the end but so useful to learn what others have done and how they've coped. This is a fantastic forum!

The forum has been a great help to me, you will learn your way. The Rheumy do not know the way, if your's is smart you will teach them along your way.

Good Luck we are traveling our roads together!

It is so great to have all of you partners traveling this road together, folks who understand the PMR road, accepting our various differences, and helping each other with suggestions and reading of their experiences.  So many others outside of our circle just don't understand many facets of this disease, for example, the weakness, getting more tired and weary, etc.  Huirrayi for you all!

Just to pick up on something Michdonn said - keeping moving is very important. It doesn't have to be much - I know many people CAN'T "exercise". Even a 5 minute walk, preferably a few times a day if you can't manage more at a time, makes such a difference. A clinical study in the north of England is giving patients a fitbit type thing and encouraging them to increase their amount of walking. Once you manage 5 minutes, you can add a couple of minutes at a time. 

I'm not saying this out of pie in the sky - in May 5 years ago I couldn't walk more than a couple of hundred yards into the village and was on crutches. By the Christmas I was walking the full walk round the village, a good 20+ mins, just by building first the distance and then the speed. I wish I could do more but I CAN now walk for a couple of hours at my own pace. It does work.

It is only a couple of months ago, you got me going. Doctor's appointment in a wheelchair. Sitting on the couch, you said try 10 minutes, rest and try 10 minutes more. My wife got me a Fitbit now I have been taking three walks a day for about 6 miles, hope to get back on my bike next week. I am PMR pain free.

Thanks EileenH. 🙂🙂🙂

A little bit at a time, each day a little more, not reducing too quickly, I really think that is the key! EileenH, cautioned me not to taper too quickly, I don't think I would feel this good if I had rushed. We are all heading down this path.

Keeping moving is very important.  I took part in a concert given by a community choir I belong to on Friday evening.  I'd forgotten how hard it is.  It meant standing for the better part of two hours, although I did sit down during the interval.  During the second half I though I wouldn't make it, had to start just moving my lips because I had not enough breath to sing!  When it was finally over I found my legs didn't want to work.  I struggled to get to the car!  I wasn't really happy again until I'd got home, had a bath and collapsed into my favourite comfy chair!  Now I think if only I'd remembered to do somthing to keep the blood flowing, taken opportunites to stand on tiptoes, etc.  

Eat some more DULSE, only kidding, it's hard to stand for a long time. A little bit at a time, no matter what it is. Increase your active a little each time. But try to increase a little each day. Plus I will not reduce my Phed if in PMR pain.

You are actually talking to someone who does her 10,000 steps or more everyday.  It was the standing in one spot, very confined, which did me in!

I'm curious too!

Good progress!   I had decreased my exercise for quite a while and have gotten myself into a jam, sort of.  My muscles have become weaker and have a bad balance problem.  I had a physical therapy evaluation last week and several important muscles have weakened including my core, important for balance.  So I began PT  last week, 2nd session is today, and I'm going to work on it real hard.  It's quicker to lose it than gain it back  This is going to take a lot of perseverence!  I can't let myself go.

Nice try, Michdonn!  You are not getting me to eat that stuff.  🤢

Thanks, I'll certainly try!

That sounds brilliant. Carry on! Even eating the dulse stuff....😄

celiia14153, I love the stuff and left alone would eat too too much. When growing up and as an adult, I would walk the beach picking it up, walk to water wash it off and eat it. My wife and Anhaga have the same dislike. It does have an unique taste. SMILING! 😊

I use one of those plastic medicine cups, holds two tablespoons (and has multiple other measurements on it but tbsp works for me).  I have two of these a day, not at the same time.  Only started about a month ago.  I have heard from people on the healthunlocked forum that they a) hate the taste and b) it didn't work for them.  I suspect the kind they are taking must have some sort of additional flavour because really it has very little taste, just the faintest trace of tartness which vanishes quickly.  The other theory I am thinking could be true is that it works to help people for whom PMR is either in remission or very close, and it's actually dealing more with pred withdrawal than PMR itself.  It could be a coincidence but i have noticed a very definite difference in my perception of how much pain I feel - nearly none any more, when before I would admit to fairly significant "niggles" although none of the original PMR disability.  I've been feeling for about three months that I may be heading into remission but of course one doesn't want to tempt fate.  The aloe vera is in addition to a number of things I've done.  I am fortunate to live where I can get low level light therapy (google that, adding words Toronto and kahn and you should find link to info) and I've done everything else I can think of to improve my health (except eat dulse  .

Haha.  Actually I think my hubby really is a herring choker as he was born on the Eastern shore.  Is that right?  You know more than I with your NS roots.  Being an immigrant and child of immigrants there's a lot I've never learned....

The light therapy has not been tested for PMR, but is used apparently effectively.  Research has shown it helps with rheumatoid arthritis.  Apparently it has some effect on reducing the production of inflammatory cytokines.  I started getting it when I was at about 8 mg.  I am in the process of phasing it out now as I don't think I need it any more, now tapering to 1 mg, fingers crossed.  But it definitely helped me a lot between 8 mg and about 2 mg.  At first I went twice a week for 1/2 hour session, later once a week.  The reduction is phased in by adding a week between treatments, this time I'm waiting four weeks.  It's a bit like the pred, not supposed to stop cold turkey!  Fortunately I have partial coverage for physiotherapy (it's a physiotherapist who provides my treatment and she's done a number of other things to help me).

Well Anhaga, as I remember either a Blue Nose or a Herring Choker, the teasing use to go a between my dad, my mother and her aunt. It was all I'm good fun. I wish you the best and hope you get to zero. I am just hoping to get to 10 then really start the DSNS. Good Luck, have a bowl of DULSE for me!😋