Feels like it's gone......... could that be?

[yogabonnie]

So I was at 5mg. and now have dropped to 4.5 with NO side effects at all. And I suddenly feel differently. I feel like myself again. could it be? how fast could I try going down further. I KNOW I would find out pretty quickly if this is my Spring is here imagination... or if my PMR has burned out. Or should I just keep taking the prednisone and try dropping another .5 every two weeks (much faster than I've done before) thoughts? scoffs? thanks! Come mid June I will have 6 adults and 3 kids under 7 in my house for a month..... If that doesn't send me back to PMR nothing will!! but that's another story! haha.

[DorsetLady PMRGCAuk volunteer]

Hi,

I would say 2 things, maybe ‘it” has gone or maybe your adrenals are working better. Whatever, glad you feel so much better.

However, don’t get carried away - just keep reducing - I would leave the quicker option until after your visitors!

Revel the feeling of being more yourself, any dose below 5mg is causing very little in the side effects line, but maybe doing you more good than you realise.

Enjoy your visitors, the summer and feeling ‘good” but don’t do anything daft!

[Hidden]

Hi Bonnie

I’m glad you are feeling so much better but please continue at the rate you have been reducing at because so far it’s worked & you don’t want to go wrong right at the end.

Enjoy your visitors but take it steady & keep us updated.

Kind Regards

MrsN

[fmkkm]

Hi,

I am at 4mg now and have days where I actually feel the old me emerging. I’ll have several days in a row with superwoman energy, the brain works and I feel like me again!! However, every time I try for 3.5 I fall back in the hole. I guess you won’t know until you try. Best-fm

[SnazzyD]

Um um um, i don’t want to rain on your parade but I’d say caution here if my experience is anything to go by. Somewhere around there a couple of reductions were a breeze and I started to feel like me and my adrenals were coming back on line. Since 3mg, wallop! My adrenals are trying to pull up the drawbridge again and I’m feeling tired and achey so my 6-8 week reduction plan has gone out the window. So, your PMR might be gone but the adrenal bit might be the challenge. Don’t rush it. So, pop the champagne and toast the spring of cautious optimism.

[SheffieldJane]

Well it has to happen some time. I really, really hope it has. I would “ grandma’s footsteps” though. Hoping, wishing and praying! 🌸💛

[DianeA1]

Since at 3.75 for a week, I have a ever so slight headache when I wake up, like the way you feel when you haven't had your coffee yet. I am getting up at the same time, having coffee as I normally do. It goes away, but is something new. I am thinking my body misses the .25??

Have fun with your guests!!

[powerwalk]

Oh good luck with it. Really glad you feel good. Don't do anything to mess it up. Patience may be called for!! As tempting as it would be to rush as you feel so good. Enjoy the "normal". Just keep it going in the right direction. Best widhes.

[HeronNS]

PLEASE take it easy. I had that feeling, too. But more than two years later I have stalled at around 2 mg. Do not rush, no matter the temptation. Better a few extra months of low dose pred you might not have needed than a flare which ends up slowing you down indefinitely.

[Mai45]

Please don’t get carried away Bonnie. Lovely to hear you felt like yourself again, really do relate to that, because like Snazzy and Heron it also happened to me. Struggled from 4 down to 3 over a longish period, but stayed there for ages, eventually honestly convinced it had all gone, I felt so ‘me’.

Now tapered to 2, and feeling rather different.

It came as a bit of a blow actually, quite a downer, because I’d talked myself into believing I was one of the lucky ones, and after 3 years it had vamoosed...

Somewhere along the way I lost sight of PMR Pro and Dorset Lady’s mantra: “the aim is not to get off Prednisoline, it’s to find the lowest dose that controls the symptoms”

Don’t want to give in without a decent trial, but if no better on 2mgm when I see the GP next month I can see us discussing whether I should go back up.

Your family time is bound to be tiring, but enjoyable. Don’t rush now when you are going to need that energy to enjoy the children. Good luck

[Rose54]

Slowly slowly catches monkey

dont be in too much of a hurry

Having a household will be stressful especialey for whole month

[PMRpro Ambassador]

Remember that now you also have to allow return of adrenal function - and that doesn't fit with a speedy drop either.

In your place I'd be considering going up, not down!!!!!

[Hollyseden]

Great that you are feeling good but don't risk a flare by stopping too suddenly. Continue proper taper and have a lovely time when your family visit 😊

[Soraya_PMR]

I had a beast of a time getting to 8, but 7 and 6 were a breeze. Did have ONE day when I felt like me (waiting for another!) But getting below 6 is urgh!

[Linny3]

Oh to feel like myself again. So happy for you!

[GOOD_GRIEF]

What's the rush, Bonnie?

You may or may not have a low level of PMR. It may be that the dose you're taking is keeping it under control, and dropping too fast could re-awaken the beast.

Additionally, you have to be conscious that your adrenals have been "sleeping" a while, and need to be teased back into full function.

I'm at 6mg and 3 and 1/2 years into the course of my PMR. I've taken it slow after a too deep and fast initial drop, and I've had no injuries, flares or other major problems since I took control of my taper.

At this point, the side effects of the dose are really diminished, your PMR is under control, and you're about to enter a really busy period calling for strength and stamina.

I say stay the course, but, of course, I'm not a doctor. Just a fellow traveler wishing you a less painful and difficult journey.

[yogabonnie in reply to GOOD_GRIEF]

THANK you. absolutely spot on of course!!! I love your last sentence. It so applies to the whole world!

[Blearyeyed]

Remember that thing you might have read me write before , be a tortoise not a hare.

It's the tortoise that wins the race in the end.

Instead of trying to race ahead and then falling flat on your face , just at the time when you have a house full of people and Summer events you want to be doing , just embrace the new energy that you have but still continue to taper wisely.

Others have said at this point some have had really energetic days when the adrenals are starting to try and kick back in . Then Fallen as the adrenals are still sputtering occasionally like a holey exhaust.

Now is the time to keep to the taper at an advised slow rate , but use the extra time and energy wisely with the Pred buffer to help you to begin increasing your exercise types and durations slowly and building your muscle and bone strength .

It's the time to pump up the vitamins , minerals , Omega 3 and protein in your diet to be used in helping your body begin to repair and rebalance itself , instead of being used to cope when you have rebound inflammation from trying to go too far too fast.

It's time to start to prepare and plan your time ahead. Finding your strategies and lifestyle techniques for the future , maybe learning new relaxation skills and building confidence in your progress .

You are a Bunnie, but don't be a Hare , you are doing so well , don't waste the good work on dashing along.

Be more Caramel Bunny than " Run, Rabbit , Run" and your success is more likely to last.

Take care x

[yogabonnie]

thanks for this wonderful reply. I do need to plan for time ahead. I do exercise quite a bit. I always have and that hasn't suffered too much. But you are so right. Rather than run head long into my old habits I need to incorporate some of my PMR behavior into my life from now on. I keep forgetting the fact that it has NOT been all bad. Quite the contrary. I have read more, rested more, eliminated unnecessary and actually unwelcome anyway, social interactions..and think I am the better for it. Priorities have come into place. I mustn't FORGET all that. AND I have been lazy about the vitamins since I've felt better. egads! THANKS for this great reminder of how to do it. Thank you ALL of you. I always seem to need reinforcement and reminders and I appreciate them.

[bunnymom]

Oh to have a day I felt normal. I am so glad for you. Enjoy your family. Just looking forward to seeing my kids gives me a boost. Please keep us posted on how you do. I am most interested. ❤️