Mixed emotions today

Hi all hope yr all well. I always knew since diagnosed it was going to be a long road ahead but i font think i prepared myself enough or even really knew how frustrating this was going to be but today after my weekly phone call with gp had to go up from 11mg to 12mg I know 1mg isn't a lot but it so disheartening I just feel I'm heading back to where I was about 2 months ago and like us all probably be like this for few yrs yet. Yo yo comes to mind, pmr is not only pain it mental pain as well, well it beginning to feel like it, but less pain hopefully so that something to look forward to. Sorry to sound so depressing but got it off my chest now ha ha

[piglette]

That us incredible that you are able to talk to your GP every week about your PMR. I am lucky to talk to them on the phone about my PMR every six months if that.

[PMRpro Ambassador in reply to piglette]

Given your GPs - is that so bad?

[piglette in reply to PMRpro]

As you say it works very well for me, although we do have a new lady doctor who is actually quite good, she will have gone again soon based on past history!

[PMRpro Ambassador in reply to piglette]

Send her flowers? Or a bottle of bubbles??

[piglette in reply to PMRpro]

Good idea. They probably won’t touch it as it might be infected with Covid!

[MrsNails]

Hi Karen

11mg was always my sticking point, so don’t be too disheartened, try staying on 12mg or even 12.5mg for a bit longer then try again, Spring is on its way so it’s always a bit easier then.

It’s quite overwhelming when you feel as if you’ve gone back to square one! Great to hear your GP is checking in on you & try not to get disheartened but l hope you are still taking it steady & not rushing around doing things when you have felt better, a failing of us all l’m afraid but it is important at the beginning to take it steady!

I was on 11.5mg but it’s not holding my PMR so sneaked back to 12mg - very disappointed as l speak to my New Consultant on Wednesday.

Best Wishes

MrsN

[HeronNS]

It is disheartening. But look on predniso(lo)ne as your friend. Your dangerous little friend, has to be kept on a short leash, but you wouldn't want to live without him. Back in my early days I looked on PMR and Pred as a two-headed dragon, pulling in different directions, neither of which we want to go in. But by harnessing Pred we can control PMR and go where we need to. A long and not always easy journey, but an adventure nevertheless. And an adventure I would not want to face without tricky little Pred....

[Daffodilia]

GP suggested waiting TIL clocks go forward TIL I try to reduce again - on 6 mg from 40 mg pred in Oct 18 - keep going - at least we have a pill for our pain

[Heron82]

Hi Karen,12 mg seems to be my wobble point also, after 4 weeks at 12 mg I ran into problems after 2 days trying to reduce to 11.5mg. Now up to 20 mg for a week to try and dampen down a GCA/PMR flare. Yes it is very disheartening and can bring one very low initially. The secret is to try and live in the moment and try and bounce back by any means that works for you. Try not to fixate on the dose but the trend downwards.

I am having too many of what I term "plodder days" at present, were any exertion takes immense effort and my gait is affected due to heavy legs etc. I crack on and do what I can, walking the dog, doing some gardening, but then the fatigue kicks in and I go in doors and read for a bit. It is important to keep our muscles working as the pred can waste them. So gentle weight bearing exercise and exercise using 1 - 3 lb weights helps keep them toned.

Spring is here and the sun shone yesterday. Hope you start to feel better soon.

🌼🐝🦋🐛🌱

[Theziggy]

Seasonal Related Auto Immune Diseases -SRAID !

Though my partner's epilepsy seems to get worse in the springtime, I keep a e-diary of her seizures and petit mals so can look at trends etc.

[PMRpro Ambassador]

I have had PMR rather longer than is fair for anyone - 16 years now since the first signs and on the way to 12 years of pred and almost freedom from pain. I started on 15mg and had a miracle. I got to just under 10mg reasonably easily and since then have made under 5mg for some months before a big flare in disease activity rather than overshooting the dose I needed took me back to well over 10mg. I have tried all sorts of ways in the last year to get below 15mg but after several days at every day 13mg I can't function.

But there are worse things happen at sea ...

[tangocharlie in reply to PMRpro]

15 is now just a bit too low for me, it doesn't quite mop up the daily puddle of inflammation so it slowly builds up into a flare. I keep having to go back up to 20 and try tapering slowly. It's still tricky and complicated even after living with PMR for nearly 10 years now. It is so depressing to be in this position but we are where we are, what can we do? The only other option on the table is Leflunomide which to quote one of your spot-on phrases is 'a stab in the dark', may do something, may not. I have noticed over the years inflammation is worse in the cold winter so hopefully in a few months things might have improved.

[S4ndy]

I look at PMR as a game of snakes and ladders! Some times you climb the ladder only to find a snake at the top which sends you slivering back down. There seems to be no logic to this illness so it's like a roll of the dice. Sometimes you win and sometime you lose. I am 5 years into my prednisolone relationship and am thankful that it is giving me some quality of life. Started off on 30mg and now on 5mg which my Rheumy has suggested I stay on long term. I also stayed on 10mg for about 6 months earlier on which helped stabilize the flares. One thing I have learnt is to have no expectations with this condition and that everyone experiences their own unique version of PMR!

[tangocharlie in reply to S4ndy]

I love the snakes and ladders analogy! From bitter experience I wish I had stayed at 5 - things all flared up 4 years ago when I rocked the boat and reduced below that. Although at the time I just wanted off Pred as was sick of it after 5 years. If I'd known then what I know now ....

[HeronNS in reply to S4ndy]

The ladders all seem so short and the snakes so long.... 🐍

[suzy1959 in reply to S4ndy]

Funny- I have always described it as a game of snakes and ladders but with no ladders! I would make very slow progress and then swiftly back down again! Until recently, my level was 11mgs ( for many years). I have just got to 8.5, the lowest I have been safely in 8 years, but not sure if that is quite enough. My CRP this week is 31, so I am keeping a close eye on my symptoms and not reducing further for a while.

[HeronNS in reply to suzy1959]

Patience and looking after yourself during this difficult stage may help. I've recently become very stubborn about increasing my dose yet again in response to persistent morning and evening pain. Splitting my dose (5 with breakfast and 2 as late as I can manage to stay up in the evening, at least midnight) helps. The last couple of mornings I woke up feeling not so bad at all. It's been two weeks and there were mornings when I was ready to throw in the towel and increase the dose. Will hang in here for a while before attempting a .5 taper. Want to avoid both yo-yo and snakes and ladders! 😁

[CarolF1312]

Hi Karen, so sorry to hear you're having such a bad time. I think you're spot on saying the mental challenge of coming to terms with PMR diagnosis and then the very necessary evil Pred is extremely difficult. I still struggle with that often.I'm currently at 4.5mg although not doing too well at the moment. Like you, so reluctant to go back up but also frightened of a really bad flare or GCA.

Wish you well.

[Hidden in reply to CarolF1312]

Hope you start your feel better soon

[Hidden]

Hi, I know exactly what you mean about the mental strain. For me it’s feeling rubbish and then looking in the mirror and seeing a moon face that makes you feel even worse. I know I won’t be able to get into my summer clothes ( i lost 2 and a half stone before PMR and have gained one and half back!) which is also depressing. I am still in the early stages and at them moment being of work is adding to my mental strain as I have never been off work I’ll before, also coming to terms with the fact that I may need to be off for longer than the one month is upsetting. I am trying to find new ways to ‘be. It’s hard when you are used to being busy and active tho. I might be able to read all the books I have never had chance to read before but I can’t help my hubbie do the decorating!Take care

[Hidden]

Forgot to say though on a brighter note that through intermittent fasting and no carbs have managed to loose 2lbs over a couple of weeks. Not half as fast as if I had not been on pred but progress nevertheless!

[herdysheep]

Living with pmr is a bit like living with a cat - you have to accept you have little control. Each will do what they want, when they want. It is a disappointment to have to increase the dose but logical when you realise the disease is still ticking away and not ready to subside. Nothing you can do, not a failure, just life with pmr.