Freedom!

[kipsky]

I was diagnosed with severe PMR in June 2019. 20, then 40 mg of Prednisolone was prescribed and I was advised to stay on 35 for most of the summer and early autumn. My movement was entirely restored, I could do almost anything I wanted, slept well….. but the slightest wrong move would lead to tendon damage.

The dose gradually came down, without my really understanding what was going on. When I got severe tendon damage I thought it was the reduction in steroids, so asked to go back up to a higher level. I was wrong of course.

When I joined this forum the need to come down slowly and carefully was explained patiently to me and I got it!

For the past 18 months I have been reducing by 1/2 a mg every 6 weeks and yesterday I took the last 1 mg pill. My wife and I cheered and I took the last few pills down to Boots to dispose of, and I got another cheer there!

I will always be grateful to those of you who helped me on my journey to a life without taking a pill of any kind. I know full well that firstly I am very, very fortunate and that so many others are unable to do the same, and secondly that I will see a reversal of my good health at some point. But I am 76 now, can walk, garden, fish, read, even play a little football with my grandson, so for that I am eternally grateful!

Thank you Health Unlocked!

Kipsky (which was the name my friends at primary school called me by!)

[jinasc]

Lovely to read your post and I hope you have a lovely time for the rest of your life.

Remember to carry your blue steroid warning card for a year and and also remember your adrenal glands are not yet up to speed, so don't push too hard, the old saying 'steady as she goes' applies. So pace and enjoy yourself.

[kipsky in reply to jinasc]

Thanks😀

[SheffieldJane]

A really uplifting post. I hope that you and your wife enjoy robust good health for many years to come! 🌻

[kipsky in reply to SheffieldJane]

Thank you so much! 😄

[Kendrew]

So encouraging to hear your news, particularly for those of us for whom it's taking a little more time to achieve the same outcome. Just go and enjoy life now.

Really happy for you.

.....and I love the name kipsky!😀

[kipsky in reply to Kendrew]

Thank you! 👍

[PMRpro Ambassador]

That really is great - and I really do hope it is freedom but don't get overconfident and if there are any signs of a return of the symptoms please don't bury your head in the sand and ignore them! It isn't unknown for even only 1/2mg to be enough to manage a very low level of disease activity but going to zero ends up letting the inflammation build up until it is enough for you to notice. Better a few months of 1/2 to 1mg than having to go up higher.

[kipsky in reply to PMRpro]

Thanks PMR Pro, I promise to be aware and not emulate the ostrich! 🙂

[Carriemetz]

Well done. Celebrations - tempered with caution! Good luck for the future and thank heavens for this forum! 🥳🥳🥳

[kipsky in reply to Carriemetz]

Thanks Carriemetz 👍

[Telian]

Lovely to read Kipsky.Enjoy your moment. Take care. 🌺

[kipsky in reply to Telian]

Thanks Telian 👍

[BruceBee]

Hi Kipsky, My math may be wrong but it suggests that your dosage was 6 or 7mg when you started your .5 reduction regimen 18 months ago.

Is that right?

[kipsky in reply to BruceBee]

Hi BruceBee, my steroid card goes back as far as mid-January 2021 and I moved from 5 to 4.5 then, so working backwards on Sep 1st 2020 (18 months ago) I went from 6.5 to 6. (I simply changed down on the 1st or the 15th of the month, rather by exact 6 weekly intervals). So 6 is the correct answer to your question! Cheers, Kipsky

[BruceBee]

Hi again Kipsky, There are some instances in the forum where I feel the need for a calculator and a tide table. Your's was relatively straightforward. Thanks

[DorsetLady PMRGCAuk volunteer in reply to BruceBee]

Not necessarily complicated……my taper was straightforward luckily…but then I didn’t have to juggle with GCA flares and and/other medical issues.

[BruceBee in reply to DorsetLady]

New to the forum, overwhelmed by the magnitude of a medical issue I never heard of before and now face. I'm sure future exposure will provide greater understanding and benefit. I appreciate your commentaries (and others) and thank you.

[DorsetLady PMRGCAuk volunteer in reply to BruceBee]

Maybe have a look at this - hopefully not too scary- but realistic -

healthunlocked.com/pmrgcauk...