Time Heals All

Thank you all for the advice on re-tapering from 15.mg. The first time I reduced from 15.0 to 9.0 (several months ago) it was a piece of cake! ...but after two recent "crashes," let's just say, I'm being a bit cautious!

I had forgotten how bad PMR symptoms are... like how a woman, so easily, forgets, the pains of childbirth. I was somehow surprised when my arms, once again, felt like two lead pipes, hanging, stiffly from my shoulders. And how my neck seized up, like the Tin Man. My hips and thighs... the worst! They felt like I had run a marathon, in the gym, while doing 500 alternating Bulgarian split squats.

The recent onset of aches and pains are now gone (thank goodness) and I'm slowly being lulled back into that blissful state of 'forgetfulness.'

Ahhhh, but fool me once, or twice... okay maybe it's been three times, but my new motto is "slow and steady wins the race." 🤷🏻‍♀️

[EdithWales]

Very sensible 🥂

[SheffieldJane]

That’s good to know. Do you know what action helped this flare to subside?

[Hidden in reply to SheffieldJane]

I had to increase Pred....

[SheffieldJane in reply to Hidden]

Still, you’re doing well to get down this far after all you’ve been through. Good luck!

[Hidden in reply to SheffieldJane]

Yes, yes I am... I have to keep reminding myself of that.

From 80mg to 14mg in 642 days. 👍🏻

[DorsetLady PMRGCAuk volunteer]

Once you’ve had a couple of flares - tapering becomes even more difficult.

Adhere to your new motto- not just for a few months but until you get to zero!

[Hidden in reply to DorsetLady]

Great, "...tapering becomes become even more difficult."

[PMRpro Ambassador in reply to Hidden]

"Once you’ve had a couple of flares - tapering becomes even more difficult."

But there is a qualification: only if you ignore the warning signs of a flare and let it establish. Slow reduction in small steps, using one of the slow tapers if you need to, avoids getting into the yoyo situation not only in the first place but also when you have made the mistake ...

[Hidden in reply to PMRpro]

Thanks... I never ignore the signs!

[Joaclp]

Good description of those weighty limbs. So easy to forget when the pred is working, or when tapering.

[Jackoh]

Patience is the name of the game- I would say most of us find that difficult probably the reason we’ve ended up here!? 😳😜😬xx

[JulieR2]

Totally agree! I was without steroids for 4 months and as you say forgot how awful the pain was. I had to take 15 mg two weeks ago but have now got to 5 mgs and I tend to stay there as I now feel well and pain free! Good luck x

[Louisa1840]

Oh Idyllic - I have just looked at your recent posts & found this one. How I love this forum. I got down to 9 mgs - piece of cake I thought. For the first 20 months or so of PMR I thought the whole thing was overblown. Steroids were managing it I was FINE.

The next few months (I was diagnosed in May 2017) have been awful it's like the prednisone doesn't work anymore. I so relate to your lead pipes and stiffness especially in hips and thighs. I upped to 25 mgs for a while with little effect. I feel like a manky half dead penguin & like an OLD Woman which I am not ready to be just yet (70 next year)

I am back down on 14 mgs ATM.

It's So not fair - WAAH BLUB!! I do everything to live a healthy lifestyle: brilliant diet, exercise, ginger tea, positive attitude. What more can I do? But then I read posts like yours & think I am not alone!!

Thank you!!!