1 month off Prednisone: Greetings, I am celebrating... - PMRGCAuk

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1 month off Prednisone

Gary1310
Gary1310

Greetings, I am celebrating my first month anniversary off Prednisone. It has been a good month. My walking is not good but I hope to start walking outdoors when our Michigan weather improves....snow and ice leave us. I was on Prednisone 1 yr, 1mo.,and 14 days. I do still get fatigue but not the deadly fatigue of the past. I still pace myself. I know I am recuperating and am weakened but no major set back. I am thankful.

29 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

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PMRpro
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Well done, all the best for it staying that way.

That is a nice encouraging post to read. Long may your progress continue.

You're an inspiration. It's good to know that it's possible to stop taking pred and still feel okay. I'm looking forward to the day I can say the same.

Good luck Gary and long may you stay Pred free.

Hello Gary! So glad to hear it. What I have found is that you won't be absolutely pain free but you wouldn't be even if you had never had PMR or GCA. But it gets better as the months go by and so does your energy. Also the exercise slowly but surely builds up to where you are making progress.

You know exactly the right attitude. With thanks. Thank you dear Lord Jesus.

Great to hear

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Wonderful news Gary!!!

Well done Gary1310!

Well done. Good news and may your walking and strength improve with time.

Gives us all hope!

Been thinking about you and wondering how you were fairing, good to hear from you, keep us all posted. I have just started my drop to 5mg from 20 when diagnosed last September bit achy but still functioning.

Oh that has made my day Gary ... so pleased to read your post! 🤞💙

Well done! When I came off (after 2 years) I found it actually took many months to gradually get back flexibility and in particular, I had to relearn how to walk instead of doing the 'PMR waddle' that I'd needed for so long. With that in mind, it might be helpful to work with a physio if you find yourself in the same boat as I was :). Also, gentle swimming, yoga, tai chi, gentle walks ... all can help.

Robinre
Robinre in reply to Pipistrelle

Didn't know about the "PMR waddle." I knew that I wasn't walking properly and when I went to my Prime doctor he said, "You are not even walking" and sent me for a lower extremity study (which was normal). He wasn't treating me for PMR but hedid know that I have had that for over 6 years now. Finally tapering--down to 1 mg (my third taper). I am starting to walk again (around the block) and can see the difference in just one month. Now I am walking normally

Pipistrelle
Pipistrelle in reply to Robinre

Great that you are down to 1mg! I came off everything in 2013 and so far, so good though over time I've had some of the osteoarthritis damage in shoulder/knee since that is probably associated with PMR (the synovial fluid issue that comes with PMR...). A few us on the forums used to joke about the waddle, that rocking side-to-side walk that comes from the stiffness! I'd really forgotten how to walk properly!

Gary1310
Gary1310 in reply to Pipistrelle

...thank you, never thought of synovial fluid being an issue with PMR. I have had a bad swollen knee for years, almost had a replacement. It could be related to my PMR. I have a lot to learn!

Well done Gary, welcome to club zero :)

Wishing you well. Good news. 🤗

Great news ! I've prednosonefor14months and down to3.5mg, soon to go down to 3mg. I've been hesitating, but your post encourages me. :)

Fabulous news Gary!!

So good to hear! Best of luck!

Well done Gary1310, I hope to join you in your achievement, in a week or two, or a year or two. Keep it up. Trevor.

Good news, Gary! As you become active again, be mindful that it’s easy to overdo it. The aches and pains from doing too much are often “delayed onset”, occurring the 2nd day after exercise or hard work, which means you might think you can do MORE work/exercise on the first day after, resulting in a very sore 2nd day.

Don’t push your luck, is what I’m trying to say. After a big day of yard work or garden cleanup, rest for 2 days before working/playing hard again. It WILL get better, but it does take time. Your muscles and connective tissues have taken a beating during your time with PMR and prednisone.

Robinre
Robinre in reply to OutdoorsyGal

Thanks for advice. I just worked a half day trimming the back fence. Know enough to rest now for a couple of days. Tapering on 1 mg now.

Thank you, I have learned to pace myself. I like doing 2 errands when I go out but have learned that maybe just 1 errand is enough. Pacing is the most important lesson I have learned.

Congratulations and very best wishes ....:)

Great news, and good luck! Keep us informed with your progress, monthly?

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