Will I be at this dose for ever?

[maria40]

Having been on prednisolone for 17 years I thought I was doing well having reduced to 9mg and going towards 8.5 (after a GCA flare which took me back up 30mg) but 2 days ago my thighs became so stiff I couldn't walk, I persevered for one more day but had to get on with life so yesterday went back up to 9.5 and am feeling much better. But I do worry that, having been on pred for so long, I may be doing some irreparable damage if I have to stay at this dose indefinitely (I'm now 77). I think at the weekend I may even have to go up to 10mg for a couple of days as I have my daughter and partner coming over from Norway and I don't want to feel exhausted by their seemingly boundless energy.

[nevagivup]

Feeling sympathy for you Maria40. I have had PMR for 9 years and am also 77. I, too, feel it will never go away, but have been taking lessons, belatedly, from my own history with this disease. I was trying to live my life as normal, thinking Pred was the answer to keeping going. But it is not. It masks the pain. But, by now refusing to get involved in high level activities, refusing to rush for trains, making my way through mobs and crowds at cinemas and concerts and theatres, malls and busy streets, but living a quiet life doing less energy-demanding activities I am doing so much better. For the last two months 3.5 mg having reduced slowly, I intend to stay on that dose until after New year, even though planning a very quiet Darby and Joan festive season. I still meet friends for lunch and tea and early evening drinks locally, so am not shunning people. This is the best I have felt in years, after so many relapses and resorting to high doses to deal with the pain. Your last sentence about your family's boundless energy tells me that you are used to overdoing things. As many of us on this forum have learned, you have to put yourself first. The first word when expected to join in should be "No." Then explain that you are finally looking after yourself. I really hope you do that, because you deserve to feel better.

[DorsetLady PMRGCAuk volunteer]

Hi Maria40,

Excellent advice from nevagiveup. You do have to change your lifestyle, not just carry on as normal just because you’re taking the tablets.

Doesn’t mean giving up things you enjoy.. just coast along in the slow lane for a while. Everybody and everything is in such a rush in today’s modern world...be a pioneer and watch for a while for a change. You might enjoy it 😊

[maria40 in reply to DorsetLady]

Thanks DL and everyone who replied. I don't get stressed about housework - that will always be there but I get frustrated by not being able to do the pleasurable things I want.

But I won't have any cooking (which I do enjoy) at the weekend as I'm being taken out to dinner on Friday and Saturday nights and my daughter is very understanding about my having to go slowly.

I haven't been going up and down too much on my dosage but have been following your slow reduction plan with success until this week when PMR thought it was time to remind me it was still there. I've always been more wary of GCA flares and tend to forget PMR lurking in the background. That'll teach me!

[DorsetLady PMRGCAuk volunteer in reply to maria40]

Sorry to hear you’ve had a bit bumpy ride recently, but as I always say - ad nauseum - a plan is only that, you can change it as and when necessary.

Enjoy your weekend.

[Soraya_PMR]

I don’t think you are doing yourself any favours by pinging your dose up and down to cope with ‘hectic’ days. Maybe as nevagiveup and DL suggest, it is more appropriate to moderate your activity and keep the pred stable. I’ve read many times here that upping and downing pred dose makes the journey more difficult.

I’ve told my family they are welcome to stay, but they have to take me as they find me. Good friends came for lunch last week, not one mentioned my dust collection 🙃 What’s the old saying? Those that mind don’t matter; those that don’t mind matter.

Be kind to yourself!

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

A little bit of dust or dirt doesn’t kill anybody. It’s the modern world’s obsession with everything having to be super-clean and bacteria free that’s going to be our downfall.

Well that’s my excuse and I’m sticking with it. 😉😊

[Soraya_PMR in reply to DorsetLady]

I agree entirely. Hence why my kids often played in the mud when they were small. It all comes off in the wash, and they rarely needed AB’s.

My only obsession when they were tiny was uniform off and a shower when returning from the hospital. But that’s just common sense.

On limited battery strength I can find more pleasing things to do than housework!

[DorsetLady PMRGCAuk volunteer in reply to Soraya_PMR]

Too right! even when battery is 100%. Real friends come to see you, not inspect your house.

Mind after 20plus years having to clean Married Quarters (when you did have to clean them yourself on leaving - no contract cleaners as now!) I never wanted to clean an oven again!

[moskin in reply to DorsetLady]

I remember those days,not a spot of dust anywhere could be found !

[DorsetLady PMRGCAuk volunteer in reply to moskin]

Nightmare wasn’t it. I remember washing the kitchen floor virtually as my husband was opening the front door to hand over the quarter.

It was pouring with rain, and 2 kids under four, a dog and removal men stomping in and out!

Not quite as good as our first move-in though - in Germany and in a private hire originally (shortage of MQs). We got a march in date of 27th December (good timing!) so hubby went on first -with some of his mates helping to move what possessions we had, and me to follow in taxi. Well I declined taxi and clambered into 3tonner (not a good idea as I was heavily pregnant!) - got a bit of a rollicking about that from himself! Anyway apparently there had been a c**k up and the other family weren’t flying out til next day, so ended up with us in the double bed and them on the front room floor! Not surprising at 3.30 in morning baby started moving about, ambulance at 5.30am - 50 miles to nearest hospital and daughter born early evening.

Never did things by the book me! No wonder I get into scrapes 🤦🏻‍♀️

[PMRpro Ambassador in reply to moskin]

Don't find any dust in my place - but then, I don't look for it! I've had to clean for leaving a flat - OMG!!!!

[CT-5012 in reply to Soraya_PMR]

When I was expecting our first child an elderly lady gave me some advice "when your children are grownup they will never remember whether their pyjamas were ironed but they will remember that you read them a bedtime story" I think friends are much the same they appreciate the warmth of their welcome etc. Probably didn't notice the dust. Sounds like you all had a good time. 😊

[Soraya_PMR in reply to CT-5012]

We do a round-robin of our various diseases.....then move onto food, drink and gossip!

[PMRpro Ambassador]

Have you seen this:

practicalpainmanagement.com...

It is quite comforting!

And I think nevagivup has expressed a lot of what I'd have said too.

And be careful - the effort of going out for a meal may be more than getting a pizza or Indian takeaway (or whatever) ...

[BonnyQuine in reply to PMRpro]

Reassuring - thanks.

[maria40 in reply to PMRpro]

I don't think going out will be too great an effort. We''re a family of foodies and we've a table at a really good fish restaurant so I'm looking forward to putting on the glad rags and enjoying it. I usually feel better when I've seen my daughters; I think perhaps they energise me. My legs are a bit better today and we're travelling by taxi anyway so no great physical strain. But thanks for the advice.

[Hindags]

Would you, with you long and difficult history, be a candidate for Actemra,?

[PMRpro Ambassador in reply to Hindags]

Who, me? No idea - but I see one of the top experts in the world in a month or so! See what he says - although I have no idea if it is approved for anything here in Italy.

[Augustus-6]

I go up and down with my pred and the rhumy and fam doctor told me its ok.