PMR same ole same ole

Thank you—it’s just that it seemed like nothing at the time and I was so grateful to be able to do it for a change.  And as you know, it seemed so little in comparison to what I used to do, what I want to do.  I rested a lot in between—which is why I thought I was pacing myself, going about it correctly.  Since I really sorta can’t move today, I’m guessing I was wrong.  My pea brain never learns though—this illness is just so opposite of how I’m wired.

Thank you—I almost cry when I look at my pmr ravaged body.  And then the old “use it or lose it” mantra runs through my head; that’s when I obviously do too much, thinking I will work myself back to normal fitness except my plan doesn’t seem to work.  I can see the muscle loss due to lack of exercise which is why I try to at least do the very basics.  Even the ones listed on this site for pmr patients are a lot for me.  If I had any sense, I’d do them only every other day.  Frustrating to no end.

You might be right.  I’m one of the ones who is never pain free, no matter what.  And it’s odd too—I really don’t sleep well over 5 mg.  When I went down to 5 from 5 1/2, I started sleeping a little better within a couple of days.  When I think of the power of 1/2 mg prednisone, well, it’s mind boggling.  I’ve had pmr since July 2016, diagnosed and started pred September 2016.  Keep thinking it will burn itself out...but it sure hasn’t.

I've been on pred since June 2015, and in many ways the last year has been the hardest since treatment started.  I think I'm at my lowest best dose, keep trying to push a little lower, but I know I have to be really careful.  I'm not sure whether I'll be better at pred zero when the time comes, or if all this is simply old age hitting me good and hard.  Either way it's hard to accept.  Perhaps if the aged were treated with more kindness and respect it would be easier.  For example, it's hard to have to sprint across the road, in a crosswalk mind you, to avoid being struck by an auto, just because drivers have no patience. 

Where are you now in your dosage?  Sorry it’s been harder...I sure thought it would get easier on the lower doses.  

I get what you are saying about aging but my friends the same age as me with their own myriad of health problems (none which I want) are out there doing things I can only dream of.  Things that seniors enjoy.

Last Christmas we went to a popular restaurant for dinner, huge crowds, had to wait our turn.  Well, I can’t stand for very long (45 minute wait—this was with a reservation mind you—) so I had to sit on one of the benches in the lobby.  There were other people there with walkers and canes, not enough benches for all of us.  I don’t look sick.  Boy, did I get the dirty looks.  But there was no way I could have stood for that long.

You should have reminded them that not all disability is visible. How rude of them.

The dose has little to do with it. You start on a dose that is going to be plenty to mop up all the existing inflammation. Then you taper the dose to find the lowest dose that is enough to manage the symptoms as well as the starting dose did.

The pred has no effect on the disease process itself - it is merely mopping up the puddle of inflammation caused by the dripping tap of the disease. That is unchanged and so your muscles are still in the same sort of state as they were at first.

I think the relatively minor flare I had last summer really set me back quite a bit.  More than you'd expect, really.  I don't understand why.

Hi Twopies, I also am one of those who is never pain free. Absolutely understanding you wanting to do the same as you have always done!

also the standing for long periods and what you experienced with those who gave you dirty looks because you don't look ill, I feel for you and am really wishing for you to be able to continue happily with your taper.

All the best!

 

Awww, thank you, my fellow compatriot—so nice of you to comment!  I don’t know about the happily part of tapering—I sure was in a fantasy world anout it.  I just assumed that as you got to the lower doses, you would feel better and better.  At least for me (and many others) that isn’t the way it works at all.  I’m still taking it easy from overdoing it earlier in the week, sure don’t feel like doing much of anything.  Yesterday I walked half a block before turning around.  Next time I’ll go half a block + 2 houses.  Maddening!  

I hope when you got up you exaggerated the difficulty of the action, and moved with a slow, stiff pace, a pained expression on your face. 

I know we are all different, but I got PMR pain free on 30 mg, my Rheumy want me off 30 ASAP. I stayed on for 6 weeks, she was not happy, but I got ahead of the inflammation and for the most part have been able to stay ahead. Today I meet some others and had a 23+ miles bike ride. I not the cyclists I was before PMR, but I am still in there working on it. Just as you must even if it is only one more house around the block. You can do it, just another 10 minutes or another 1/6 miles. Think positive and try to smile. ☺️

Michdonn, are you talking to me?  I've never been athletic, have no interest in biking or skiing, but throughout prediagnosis  I continued to walk and exercise, and after treatment I upped my walking and have taken up Nordic walking as well.  I do a slew of physio exercises, a little yoga, and, if I remember, also wear a weighted vest, or do Tai chi.  I was referring to the fact that Twopies couldn't stand in line for 45 minutes waiting to be seated.  Nor more could I.  And people gave her dirty looks because she looks healthy.  I suggested she behave as disabled as possible when standing up and going to the table in order to teach the judgemental folk a lesson.  

Anhaga, not you, but the conversation. Hell I looked in great shape when I was in a wheelchair, still today if Jan and I have to stand in a long line I go sit down. If I can walk I am okay. I never worry about what other people are thinking. I try to stay positive and keep smiling ☺️

Yes happily maybe the wrong word, I know I am not happy while not tapering. I also was in a fantasy world about it, a lady I know has tapered 1mg a month, I thought I could at least do the DSNS method.

I did assume too that you would feel better on lower doses. I do think sleeping does get better.

Well done you!! half a block before turning around!! Maddening, yes but it must be that way, I so understand the frustration

And by the end of the month it'll be nearer 2 blocks - once you start it is surprising how it improves. And maybe 2x half the block with a good rest period between would work? Often it is trying to bite off the whole lot that doesn't work - nibbling at it does. 

I’m gonna have to go back up on the pred.  Fatigue, pain in lower legs and feet, some brain fog, really just pretty  miserable.  Yesterday I did walk 1/2 block + two houses, wore me out.  I’m useless today.  Think I’ll pop up to 6 mg for 3 days, see whether that calms things down.  Then do I go back to 5 (where I was) or ramp it back to 5 1/2 and stay there for awhile?  If you recall (don’t know whether I included this info anywhere in this post), I just couldn’t handle 4 1/2–I used the dsns method to get there but the bone crushing fatigue was more than I could handle.  You suggested (in another of my posts) that I go back to at least 5 and stay there for at least the summer.  

I think I’m looking for assurances that it’s ok to go back up.  My question is go back up to what, stay there for how long, and then decrease to what?  

Why shouldn't it be OK to go back up? If 4 1/2 isn't enough for you to function it is no use is it? It doesn't matter what method you use to reduce, you won't get below the dose you need to manage the inflammation and, at this stage, it may not be slow enough for adrenal function to catch up and the result is overwhelming fatigue. It is difficult to tell which it is for you, I'd suspect slow return of adrenal function since your main complaint is fatigue.

One top and very respected PMR specialist in the UK likes to keep his patients at 5mg for up to 9 months - once they get there. He finds that makes the rest of the taper easier. Anything below 7mg is a physiological dose - less than the equivalent of the amount of natural corticosteroid, cortisol, your body makes per day - so isn't causing much in the way of problems. If you take less, your body needs to make more. The end result is the same amount of steroid. 

If you can manage reasonably well on 5mg that would be good - but if you need 1/2mg more, you need 1/2mg more. It doesn't mean you won't get lower - just not yet. If it were me, I would stick at whichever dose you settle on for at least a couple of months before trying a slow and careful 1/2mg reduction again. Many people find it doesn't work the first couple of time - but eventually it does. And at this level that may happen for each new dose until suddenly your body gets the idea.

You wouldn’t suggest popping it up to 6 for a couple days to calm things down?  I’m at 5 now, been there a few weeks.

No reason why not - you can do that for up to a week and drop back.Or then spend a week or two alternating 5 and 6. It really depends on what dose makes you feel well enough to cope.