Flare? Advice

[kate1978]

Hi all have had PMR for just over 5 years and was doing well, but seem to be stuck at 3 mg trying gradually to get down to 2 and a half

I've been really busy in the garden for the last 3 weeks or so, digging out old shrubs, dividing perennial plants, taking stuff to the tip etc, I started with painful wrists, something I have never experienced before with PMR. Then the neck shoulders and arms, I was reluctant to up my dose of pred, but pain relievers didn't touch it, so took 4 mg on Wednesday, then 5 yesterday and this morning, still no relief .

Do you think I should increase the dose by more? I had forgotten just how painful this Is and it's making me utterly miserable. Thanks for reading and would welcome any advice

[DorsetLady PMRGCAuk volunteer]

Hi,

PMRpro is really the expert in this - I had GCA and fortunately no flares, but I would suggest a short sharp increase to maybe 7.5mg for a few days to get a grip of things - then drop back down to 5mg staying there a bit longer (a week to 10days) and depending on how things go, a staggered drop back down to 3mg may be on the cards.

The garden and the good weather has a lot to answer for!

[kate1978 in reply to DorsetLady]

yes it's looking like I may have to do just that, thank you

[PMRpro Ambassador]

Your muscles remain intolerant of certain activities despite the pred - it is just managing the inflammation that the underlying autoimmune disorder causes and that continues attacking your body in the background despite the pred. So - if you do too much, you will suffer what is called delayed onset muscle soreness (DOMS) and it will probably be worse than you would expect and also last longer. Unfortunately - pred isn't likely to help. This is the equivalent of running a marathon without having done the training I'm afraid.

You could try a couple of days at 10mg and see if it helps relieve the pain but to be honest I doubt it somehow. Just time and rest. And in the future: pacing and resting as much as you work...

[kate1978 in reply to PMRpro]

Hate to admit defeat but I will try that thank you for your reply

[PMRpro Ambassador in reply to kate1978]

Not defeat - realism. A learning experience.

[PMRCanada in reply to PMRpro]

I learned the hard way to. I think that is what is happening with my current physio strengthening exercises as I try to build up strength in my quads as recommended my my Ortho surgeon. He suggested it (along with continued weight loss) to help with my knee issues. Alas, I have had sore quads and hamstrings this last week I believe due to increasing the repetition of the assigned exercises. I will discuss further with physiotherapist next week, and in the meantime cut back the exercises. (sigh)

[PMRpro Ambassador in reply to PMRCanada]

Squats for thigh muscles always make my quads sore if I do more than about 5 at a time. Long gone the days of a 100 before breakfast...

[Telian in reply to kate1978]

Exactly as PMRpro has said, I've experienced the same recently and increasing the pred wasn't that helpful but resting from the activity that caused it has. Take a higher dose if you wish then you can come straight back down after a few days even one - it's just another learning curve of getting to know your body, try not to be too disheartened, I had to give up aquarobics for the same reasons and it's been quite a few weeks and I'm still getting there.

[SnazzyD]

Hello, I only have GCA but have really noticed after 18 months of Pred that although the muscle wasting has greatly improved, they really complain if I do anything extra like a gardening frenzy. During the hot spell I was lugging can after can of water up the garden every evening. After about 4 weeks I thought I had PMR. Nope, it was my muscles just not being up to the job. I stopped and the pain went away after a couple of weeks total rest. Have done it again now that the ground doesn’t need explosives to make a hole in it and I can get at the weeds, though it wasn’t as bad this time. Anyway, just a thought.

[kate1978 in reply to SnazzyD]

Resting isn't something I'm good at, but I will have to accept defeat, the weather isn't good for gardening now anyway, all the inside jobs which have piled up will have to wait!

[PMRpro Ambassador in reply to kate1978]

Resting doesn;t have to be doing nothing - you just have to use different muscles, letting the others recuperate.

[Grants148]

Hi Kate,l have done the same as you,quite happy on 3 mgs.,then overdid jobs in the garden and had bad PMR flare up.l have increased my dose of Pred., to 5 mgs.,it has taken about three weeks to feel much better.l am not sure now when to go down 1/2 mlg.lf your pain is not responding on the 5 mlg., dose ,Dorset Lady has posted to increase to 7.5;mlg.,and l,would go to that dose first and then down to 5 mlg as she has advised.l,hope you will feel better soon.

[kate1978]

You live and learn! It's good that we can have advice from each other on this site, I think I had got too complacent

[David-42]

Hi Kate. I am on exactly the same dose of pred as you, currently on a DSNS reduction to 2.5 and, like you, with lots to do in the garden. Nearly all my jobs in the garden involve the shoulders one way and another, so I have had plenty of time, over the last three years of PMR, to try to solve the problems this raises. Early on in this journey I realised that, for me, there is a world of difference between the aches and pains due to DOMS and the debilitating pain radiating through my body when the inflammation takes over. So, although I try not to push myself too hard, I have become used to living with the temporary DOMS aches etc, which ease and disappear after a spell on light duties. This last week, with the approach of storm Callum, I had three full on days in the garden followed by the inevitable aches and pains, but which have now resolved after three days of weather induced indoor activities. I have never increased pred in an effort to resolve DOMS. I suspect no two people with PMR react in exactly the same way in all circumstances, but this approach works for me. Keep enjoying your garden and maybe, when you and I reach zero pred, we can look back and see that the post garden ache was worthwhile.

[kate1978 in reply to David-42]

Hi David because the spring was very wet and the summer was very dry I had a lot of catching up to do in the garden, as well as digging and separating, I planted 3 new roses and 3 new shrubs and lugged bags of compost from the garden centre. Have put lots of new bulbs in and still have some more to plant

I expect I have been very lucky until now as I've only had little niggles when trying to reduce to 2 and a half

This time it has really hit me!

Thanks to the advice on here I have taken 7and a half for the last 2 mornings and it feels a touch better today, but I'm taking it easy

[David-42]

Glad to hear that the pred worked and hope you are back on track before too long.

[kate1978 in reply to David-42]

Thank you