Tapering from 1mg

[Blossom20]

It is the 3rd time I've tried to taper from 1mg. Each time I get shoulder pains. But I don't know if this is because I'm also doing exercises. I don't seem to heal quickly after exercise like I used to. But I'm trying to get my fitness and muscle strength back.So I'm doing a slow taper one less a week, and am now on 4 a week. I can't do .5 because I'm using gastro resistant pills which can't be cut. Today I'm due a day with no pred and I wonder whether I'm doing this correctly. Mon, tue, old dose (1mg) wed new dose ( none) Thurs old dose Fri Sat new dose (none) Sun old dose (1mg)

I have also tried in the past to go from 1 to .5 but that didn't work either.

Maybe we have to put up with some stiffness? I instinctively feel it's not Pmr pain, just stiffness, but how will I know?

[Wouldlovetorun]

Hello Blossom20! You have done really well to get to 1mg. Do you think it's a bit too soon to taper further if you are getting pains? If the pains are worse tapering perhaps it's an indication of not quite there yet? I have never been 100% shoulder pain free and if I do too much of normal everyday things my shoulders let ne know first.

x

[SnazzyD]

It took a long time for my muscles to be able to cope with exercise even after not taking Pred. No programs for me, just incidental exercise. Even lumping the vacuum cleaner about could make me stiff. Any new exercise and I waited a day or two to see what effect it had with mild stiffness only as acceptable. I’ve always been used to the usual way where you decide you need to increase fitness so you start a plan and off you go. Injury was never far away so I had to be really careful. My shoulders were a particular weak point.

I had to have coated Pred but at these tiny doses, uncoated was fine on a full stomach. I faffed around with cutting up 1mg tablets for a year before zero. No idea if I needed to but psychologically I did.

[Blossom20 in reply to SnazzyD]

Thanks. I must say I tend to overdo the exercise if I feel fine before it. I'm ok the next day but then it kicks in and lasts for up to a week. Maybe that's what happens when you're older and to be expected?

[SnazzyD in reply to Blossom20]

That sounds exactly my pattern to the tee. I was super fit before GCA hit with no PMR. My physical world changed completely, admittedly with higher doses. I have had other acute illnesses that have taken a long time to heal from and the picture was the same.

[DorsetLady PMRGCAuk volunteer]

Sometimes it’s us difficult to know what is PMR and what is ‘life’ on such low doses. So may be just carry on, it’s really up to you.

However, if you aren’t sure, maybe return to 1mg, stay there for a few more weeks and then elongate your taper, so repeat each week… and see how that goes … my 14 week version is just that-

healthunlocked.com/pmrgcauk...

[CarolF1312]

Hi Blossom, I'm in exactly the same position as you. I'm week 4 tapering from 1mg to 1/2mg and trying to build up muscle strength. It is so difficult to decide if post exercise stiffness is just that or PMR raising its ugly head again. I think psychological I'm hyper sensitive to every ache and pain as I'm scared of a big flare. Fingers crossed, in a few months we'll both be off Pred and a lot stronger. Good luck.

[PMRpro Ambassador]

I wouldn't be doing 1mg a week less - I'd do 1mg over 2 weeks at least. There is no hurry - and I wouldn't even feel I had to do it.

And I'd suggest you don't overdo the exercise - you don't say WHAT you mean by exercise. But at this stage, it must be very low and very slow - no weights to start with, just the weight of your limbs. You say you feel it late and it lasts a week. That is DOMS, delayed onset muscle soreness and it is telling you whatever you did was too much. Building up the exercise now means start with a tiny amount and assessing the next day. And being really strict about NOT doing more because you feel good. Make sure it really hasn't been too much and add a miniscule bit the next time. If the exercise is bicep curls for example, do 5 curls with no weight. If that was OK, do 6 the next day. Build up one at a time to 10 - and then maybe consider adding 500ml water bottles as weights with 100ml water in them and now only do 5 curls. Again add one at a time up to 10. Then add 50ml water to each bottle.

It sounds ridiculous I know - but this is the reality of what we can do. Do too much and you set yourself back because the muscles are unable to repair the microtears that exercise causes and which achieve the training effect as they heal. It takes much longer after PMR and pred has had a go at them!

[Blossom20 in reply to PMRpro]

Ooh, thank you! The last paragraph says it all! That's what I didn't get. But why does it take so long after you are free from Pmr and on low dose pred?

[PMRpro Ambassador in reply to Blossom20]

We are biological beings, not machines. Nature takes time to recover from unnatural situations and PMR and pred are unnatural. Everyone is different and while some may sail along and be back to pre-PMR and pred status without a problem, others won't. And aging doesn't help!!