The Holy Grail

[66Mac]

Well after three years with PMR I finally managed to taper down , on the Preds to zero . Great I thought that's me back ! What the Doctors , and healthcare professionals omitted to tell me that the next six months would be hell , I found what I call the withdrawal zone !!!!!!

I was aching in places I'd never ached before , my legs were weak , I was all emotional at anything , couldn't concentrate on the smallest task and generally considered reaching for the pred pills again .

Went back to the Doctors on numerous occcasions , just to be told the same thing you'll have to ride this out . Well that was six months ago now , and it looks like that advice was sound and I'm nearly back to my former self ( in fact my self plus one ) .Training and weight loss starts after Christmas .

I found a couple of short daily walks outside in all weathers ,really improved my well being .

So really a message to all you PMR sufferers that things can and do improve , PMR does massively impact on your life but there is light at the end of the tunnel .

MERRY CHRISTMAS AND A HAPPY NEW YEAR TO ALL

[DorsetLady PMRGCAuk volunteer]

Don’t think it was so much the “withdrawal zone” - that shouldn’t happen if you’ve tapered sensibly and your PMR has truly gone.

Sounds much more likely that it was adrenals glands not functioning properly - surprised (or maybe not!) that nobody suggested that.

Glad to hear you’re on the up!

[66Mac in reply to DorsetLady]

Thanks Dorset Lady ,

Hope you are ok .

Followed one of your earlier posts about tapering and took it nice and steady , even going back up at one point .

Come to think of it the doctor did actually mention Adrenal Glands in one of our conversations , didn't know what they did so I left it at that and didn't do any research . That's one thing that having a condition like PMR does makes you a good medical researcher 😀

[DorsetLady PMRGCAuk volunteer in reply to 66Mac]

And somebody that questions a lot more!

Forgot to say welcome to Club Zero... and yes we do need to remind others on occasions that life does go on after PMR/GCA, it’s all too easy in the bad times to remember that.

[piglette in reply to 66Mac]

I kept telling my doctor I thought I had adrenal gland problems. I felt like death warmed up at 5mg. He just looked at me as if he were not listening.

[PMRpro Ambassador in reply to piglette]

Probably wasn't!

[piglette in reply to PMRpro]

Just thought of you. A friend and I were trying ORANGE AND HAZELNUTS TORTA FLORIANA, I had received from another friend for Christmas. We decided we could not taste the orange, but the nuts were OK, however it did not really taste of much. Are they normally rather uninteresting? There was an envelope of something we thought might be cocaine, but I think it is icing sugar with it!!

[PMRpro Ambassador in reply to piglette]

Never heard of it!!! Only thing I can find is some company that sells it - but a lot of Italian seasonal things are a bit delicate in flavour - being kind

[piglette in reply to PMRpro]

Someone else came round with an open bottle of wine so we finished the torte and the wine. It improved no end with the wine. It tasted quite good by the end.

[PMRpro Ambassador in reply to piglette]

I find most things improve with wine ...

Much of the Italian seasonal stuff can be disgusting - cotechino for example. OTOH, we had a wonderful set of xmas meals in a colleague's family home near Bari a few years ago. Food, food and more food. Pastries deep fried in olive oil - oh yum!!!!

[Hidden]

Good luck. Like dorsetlady I would imagine it was the adrenals grumbling and griping. Happy trails! 🌻

[66Mac in reply to Hidden]

Thank you

[SheffieldJane]

Thank you for sharing your experience. Well done for coming through it all! So glad that you are embracing true wellness.

Wishing you a happy Christmas and a truly special 2020. 🎇

[PMRpro Ambassador]

The usual comment is that it takes up to a year to get back to "normal" once you are off pred. But in that year you do need to be very aware of poor adrenal function - if only GPs took it a bit more seriously. While slow and steady as you did gets you to the terminus, creeping along very slowly at the end helps reduce the discomfort you experienced. Hanging about at 1mg pred can make a massive difference to quality of life.

[BonnyQuine in reply to PMRpro]

Thanks for this. Hope to be able to put it into practice before too many more months have passed.

ATB.

[Blearyeyed]

Well done you!

I like that term , 'The Withdrawal Zone ' ,I think it's worth remembering , everybody gets it after any illness or drugs , and after a long illness on steroids , like a major injury or illness , it can be the hardest step and for some take as long as the illness to recover 100% from .

Six to 12 months is pretty common getting those Adrenals to step up to the Game once again after they got used to being Lazy and letting the Pred do all the work , so you should be really proud of yourself.

Good luck in Club Zero and Merry Christmas

[PMRpro Ambassador in reply to Blearyeyed]

Not much chance for me returning to normality in this lifetime then

[Arflane97G]

Well done you! I am 6 months in, great to hear your good news

[bunnymom]

Merry Christmas to you too. How great to be able to plan and get on with life.

[66Mac]

Thanks for all of your kind replies .

Just wondering when you are in club zero as you call it , can and does pmr come back again ? Or is it like once you've got over it there is some immunity to getting it again ? My Doctor couldn't really give me an answer to this .

[PMRpro Ambassador in reply to 66Mac]

It wasn't an infection so you can't develop an immunity to it. It is due to a deranged immune system and noone knows what causes it in the first place.

Once you have had an autoimmune disorder it never really goes away. Although it may burn out and go into remission for a very long time, often permanently, the propensity remains for it to develop again. I know several people who have had it twice (or more) - the only thing they have in common is that they say each episode was totally different, even down to the symptoms and duration. All of them have got off pred the last time as well though.

What we do often see is people rushing off pred because they - or more often their doctor - thinks 1mg can be doing nothing so they might as well stop - and within a few months they are back at the start again. I have come across people who were doing really well at 1/2mg but as soon as they stopped - bang, it came back!

[Hidden in reply to 66Mac]

I am afraid you can relapse which is why we talk about remission not recovery. Fingers crossed you won't. But if it does you usually start on lower dose. I would suspect but haven't got the evidence to hand, perhaps pmrpro might, that more don't relapse than do.

[PMRpro Ambassador in reply to Hidden]

I think I have heard a figure of about 10% relapse. That's PROPER relapses where they got off pred for more than a couple of months. Some doctors don't distinguish between what we call flares and what they call relapses which is confusing. If you get a return of symptoms because you reduced the dose too quickly then that isn't a new episode of PMR, that's just bad managment of the existing one.

[Hidden in reply to PMRpro]

I thought it wouldn't be many. And yes some sort of clarification would help.

[Louisepenygraig]

Merry Christmas to you too. Thank you for sharing your story. It's good to know that there can be an end but to be forewarned that there's more to it than just getting to zero.

[Labradorite]

I was interested to read your post and it has given me some encouragement to ride things out. Following a diagnosis of GCA in December 2015, I tapered prednisolone to zero by July 2017. I was then diagnosed with PMR some months later in January 2018, and I reached zero prednisolone for the second time in September 2019. I am disappointed that I still have stiffness and pain, particularly in my neck and shoulders. My legs, arms and hands also ache. At a recent appointment with my rheumatologist I was told that clinically there was no evidence to suggest a recurrence of GCA or PMR, but I have cervical spondylosis, lumbar spondylosis and rotator cuff disease in both shoulders. I have been referred for physiotherapy and encouraged to take more exercise.

Good luck in Club Zero.

[jannie21]

Well done and welcome to club zero. have a merry Christmas and a happy new year. Jannie21 x.