Happy Anniversary to me!: My quick tour through the... - PMRGCAuk

PMRGCAuk

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Happy Anniversary to me!

OutdoorsyGal profile image
16 Replies

My quick tour through the PMR world has been interesting, and you folks have helped me understand a lot about this highly variable and often confounding diagnosis.

On Dec 31, 2018, I took my last 1 mg dose of Prednisone, after an 11 month taper.

I’m happy to report that at one year OFF prednisone, my “niggles” are much reduced and I’ve regained some muscle mass and strength. My wrists hardly hurt at all, and hand stiffness is greatly reduced. My hips are still stiff upon getting up from sitting, but that seems to be my new normal. My hair is growing in again (but no curls), and my weight (which only went up a little) is back to normal. All is good!

Wishing good things to all of you in the new year!

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OutdoorsyGal
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16 Replies
SheffieldJane profile image
SheffieldJane

Oh! No! The curls go?

Lucky you OutdoorsyGal. Don’t overdo things. X

OutdoorsyGal profile image
OutdoorsyGal in reply to SheffieldJane

No, I never HAD curls. But others who reported their hair regrowth was curly got my hopes up for some curls. Or at least some waves. Not to be...

OutdoorsyGal profile image
OutdoorsyGal in reply to SheffieldJane

And in the past year I’ve learned a lot about overdoing and pacing myself. Fortunately my 68 year old husband is slowing down a bit too, so I’m not struggling to keep up.

HeronNS profile image
HeronNS

Always good to get news from the "other side" so to speak, although your venture across the border was more courageous than most. I'm going the standard way, currently tapering to .5 mg and actually feeling really well, touch wood!

Thanks for the update. Take care.

OutdoorsyGal profile image
OutdoorsyGal in reply to HeronNS

Good luck to you Heron.

I wasn’t brave. I totally relied on my MD to manage the taper and didn’t know there was any other way to taper till I found this forum, when I was almost done.

I had doubts a year ago about whether I could STAY off prednisone, because some stiffness recurred, and new wrist and hand pains developed, too.

But nothing like the initial onset of PMR, and despite these setbacks my inflammation levels stayed close to normal, and I gradually regained strength. I do feel much less strong than before, but some of that could be aging.

Meggsy profile image
Meggsy

Yay for you OutdoorsyGal and it’s great to know there is still hope for regaining a full head of hair. 👏👏 ⭐️

OutdoorsyGal profile image
OutdoorsyGal in reply to Meggsy

Bear in mind that I never HAD a full head of hair to start out with, so when it started falling out I was panic-stricken.

DianeA1 profile image
DianeA1

Wonderful to hear!!

Blearyeyed profile image
Blearyeyed

That's amazing ! I'm so happy for you , a full year and it's going to get better everyday , it does give me hope to hear stories like yours and inspires me to stay positive.

Stay Healthy and keep in touch xx

PMRpro profile image
PMRproAmbassador

Excellent - and long may it last!!

powerwalk profile image
powerwalk

That's great news. I hope you keep well. How is your fatigue? It's one of my biggest issues and I see you had posted about it before.

OutdoorsyGal profile image
OutdoorsyGal in reply to powerwalk

Fatigue has not been an issue for me, before, during or after treatment. It was mainly disabling stiffness and pain, limiting my ability to get dressed or brush my hair.

(My post about fatigue was to ask if there was a link between deathly fatigue and extreme morning stiffness, based on others’ comments on the forum.)

powerwalk profile image
powerwalk in reply to OutdoorsyGal

Oh right. Thank you.

Jackoh profile image
Jackoh

So pleased for you! Good to have some positive news!

bunnymom profile image
bunnymom

Thanks for your report!

Lonsdalelass profile image
Lonsdalelass

That's great! It's always good to hear how others get on once they're hitting low doses or off pred altogether, and your post gives me hope, so thank you! Continued good luck your way! X

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