Stupidity comes before a fall!!'

[JulieR2]

Well have been doing fantastically well until my own stupidity took over. I guess we all learn by our mistakes! Diagnosed in Feb and by last week I was down from 15 mg of steroids was back at work and feeling really good. I had even started weight watching'! Saw GP and agreed to reduce steroids again but I think I got carried away! Yes I have read about the dead slow method and thought that I could go from 12.5 to 10mg and there after go slowly by 1 mg a month. For the wise amongst us you may now be thinking we told you so, which you did and your were right. I feel

Lousy and have had a return of symptoms but not quite as bad as initially! I have upped to 11mg today but wondered how long I should wait to see if things get better!

So from being up beat and questioning if I had dreamt it all I now have been sharply reminded who is in control and it's definitely the PMR!!!!!

I feel stupid and cross with myself

[HeronNS]

If I were you I'd get those symptoms under control for a few weeks and after that reduce by no more than 1 mg at a time. You may or may not need DSNS just yet, but by using the 4 day start stop, rather than 6 day, the taper for 1 mg is only one month and if you feel well you can just carry right on to the next taper, so not much slower than just dropping 1 mg at a time for a few weeks, and much less likely to cause symptoms. We need to watch out for steroid withdrawal pain which is nearly immediate after a drop. Increase of PMR pain usually builds up slowly a few days after dropping the dose. So DSNS helps us avoid the steroid withdrawal and also to more accurately pinpoint the lowest possible dose which will control symptoms. Be aware that there are some traditional sticking points where the body seems to have more trouble adapting to the lower steroid dose, including 10, and then around 8 or 7 where the adrenals start waking up and one then has to start taking adrenal sluggishness into account.

[JulieR2 in reply to HeronNS]

Thanks so much

[PMRpro Ambassador]

If it were me I'd take 12.5mg for a few days and then try 1mg the way Heron has just suggested. It isn't slow when it works!!!!!

[JulieR2 in reply to PMRpro]

Thanks tortoise and hare

[PMRpro Ambassador in reply to JulieR2]

Exactly!

[SnazzyD]

Ah, the drive to be BACK. I can relate to that. Not stupid, just eager perhaps?? It's easy to think we might just be different; sometimes we're right and sometimes we are mistaken. You don't know until you try and hopefully you come unscathed and/or wiser.

[JulieR2 in reply to SnazzyD]

Thanks you are so right

[DorsetLady PMRGCAuk volunteer]

Not stupid, just lured into a false sense of security by feeling okay. You weren't the first, and you certainly won't be the last to make that mistake.

On the bright side, you won't do it again. Take note of what HeronNS says, and you won't go far wrong.

Good luck in getting back on track.

[JulieR2 in reply to DorsetLady]

Thanks I will let you all know how I do

[markbenjamin57]

Hi Julie

Don't be hard on yourself blame wise - try to see it as a learning curve!

I'm sure none of us would consciously over-reduce the steroids and it often seems a matter of trial and error (often error!) in terms of how much, how quickly at any time in the tapering process. Been there and got the T shirt!

Even the well-respected DSNS and equivalent 'slow' tapering methods don't come with any guarantees - if I'm right, at best they only reduce the risk and / or severity of flares / withdrawal symptoms etc. And, as others here often say, other factors that aren't necessarily always within our control can de-rail even the most gentle of tapers (stress, injury, infection, over-exertion etc).

Also (again, if I'm right?), it seems that PMR has a mind of its own and the cycles of inflammation can vary independently of anything else. You're right, PMR is the Boss and we have to learn to respect it. I agree with the others here about the tapering dosage thresholds (approx. 10 / 7mgpd) where it's even more critical to go gently, or even stay on a plateau for a while.

My strategy in dealing with PMR is to plan to operate at about 50% of previous 'load' physically and mentally. And, of course, to pace life a little better (Hare and Tortoise etc). But that's easier for some of us than others, as I well know!

MB

[JulieR2 in reply to markbenjamin57]

Thanks Mark it's so frustrating but I know everyone on here knows that. I have plans for my life but it seems my PMR hasn't realised that! Or maybe it does and that's why it's such a nasty disease that is sent to show us who's really the boss and it isn't me I have now learnt

[markbenjamin57 in reply to JulieR2]

Yep Julie!

I think illnesses like PMR (and other unplanned, major Life events for that matter?) are a tap on the shoulder to remind us that we aren't always as much in control of our lives as we would like to be. Destiny shakes hands with the Boss..and all that?!

I don't know if others here relate, but for me some of the challenges of PMR are as much psychological as physical. The self-concept gets a bit of a kicking when you suddenly can't do the things you used to do without blinking - AND are getting older at the same time.

That said, re-assessing Life with PMR can open up some new avenues as well as limiting others. In my enforced 'rest' from full-time travelling and consulting, I've managed to get the material together for the book I've been threatening to write for 25 years or so. And ironically, it's some of the more Bonkers amongst this community who've spurred me on to do it at last!

The Moral of the Story? With PMR, Life doesn't end. You just have to learn to roll with it...

[JulieR2 in reply to markbenjamin57]

Thanks Mark I need to find my alternative or at least the alternative to pay off the mortgage I will let you know how I get on

[markbenjamin57 in reply to JulieR2]

Fingers crossed J, I well-know how PMR can affect all aspects of life including financial planning / security. And financial Stresses can be the worst!

I'm fortunate. I started out in life with nothing - and I still have most of it!

Try to keep smiling on the Journey - keep us posted.

MB

[Amkoffee]

I wouldn't give it long. Like maybe a day. And actually I don't think you upped it enough. The Golden rule is to up it back to where to felt good.

[JulieR2]

Thanks so much I will let you know how I get on. Had plans to be off steroids within a year but now realise that I need to think two as a minimum and anything else is a bonus if weight watchers doesn't work I will at least have a new wardrobe

[HeronNS in reply to JulieR2]

Julie, my doctor neglected to tell me pred wasn't a cure. And I had the total miracle, all my aches and pains vanished within three days. I was sure I'd be off pred in three months! Well after finding Patient forum in the middle of a sleepless night, and later this one, I soon learned this was a fantasy. But I still hoped for a year, or perhaps two. It's been about 22 months so far, add the untreated 14 months beforehand to that, and you can see my PMR journey is a lot longer than one year. But not all of that time has been spent at the higher initial dose. As pred dose comes down (and believe me the slower the better, even DSNS has proven a little too fast for me in its pure form since about 5 mg) then things settle, side effects diminish and although I don't think I personally will ever be the same person I was at the beginning that is probably no bad thing.

[JulieR2 in reply to HeronNS]

Thanks it's really nice to hear others stories as reassurance I will post in a few weeks to let you know how I am doing😊

[HeronNS in reply to JulieR2]

Yes, please do keep us up to date with your progress.

I have a little pocket calendar, you know the kind with a month on two page spread, a square for each day. I cannot tell you how many times I've written in the projected taper for the next few weeks, only to have to alter it. At first it was because I could reduce a little faster, using the 4 day start stop for DSNS. Later I began to find I needed to take longer, and also wait longer before next taper and started tapering by only .5mg at a time. All the way along I've paid attention to how I feel and at times very reluctantly have had to acknowledge I needed to slow down even more. To tell the truth, however, I think I've dealt with steroid withdrawal as much as with PMR and maybe I could have been a bit braver with the reductions. But as PMRpro tells us, it isn't slow if it works. And I'm the same age now as I would have been had I never had PMR, or if I had taken a chance and tapered faster and flared. Life moves on inexorably and we just do our best.

[PMRpro Ambassador in reply to JulieR2]

Julie - I am unusual, I have had PMR for 13 years and have been on pred for nearly 8 years. But it really doesn't make a great deal of difference to what I do. I know you have to work - that is going to be harder and as a result it is very likely you will need a bit more pred than others get away with.

But while it feels awful at the moment - it WILL get better. In a year you will look back and see how far you have come.

[JulieR2 in reply to PMRpro]

Thanks for the support I know that I have come a way already and I took the advice upped the steroids and managed a walk today just ordered a picnic backpack so I can take refreshments and pace myself as walking makes me feel psychologically better. Will update in a few weeks time

[Patience_1 in reply to JulieR2]

Walking is great exercise - helps keep our bones healthy. Glad you've managed to get to the level of relief that helps you with that.

[TerryOR]

Not your fault, from what I'm reading, it is all a learning process. My girlfriend just found out she has PMR is is still trying to deal with the emotions, the shock! One day she is good, next day, struggling. It is very confusing on top of everything else.

[JulieR2 in reply to TerryOR]

Thanks so much! Just as an update I am now down to 8mgs have been walking regularly and am so much better I would love to wake up without the feeling of stiffness but I think I can tolerate this

[TerryOR]

That is great news.

[Celebrant]

I have just posted on being stupid and then found this post--Perhaps we should start a mistakes I have made post and give the winner a prize.