I think you do get better at it as time goes on - and some of us have had pretty good fun despite PMR. Maybe not exactly how we wanted to but nevertheless, it could have been a lot worse.
im fairly new to this, 6 months in and currently 6.5 mg from 15 .... I completely agree, I have learned a lot from people here and more idea of the challenges and what to do when things go wrong, even how to reduce the chance of issues, so helpful, thanks to everyone. Also amazed at the quality and hard work of the moderators/ambassadors, nothing goes without a prompt, thoughtful and knowledgable answer.
The song “A long and winding road” comes to mind. A journey none of us wanted but hopefully,we can all get to our destinations.As for the help that we get from the heroes of this forum , PMRpro,DL,Snazzy D and Rugger,where would most of us be without their help?Truly our Christmas Angels.xxx🧚🏼♀️🧚🏼♀️🎄🤶🎁😜
Just wanted to add my grateful thanks and agreement to the rallying thoughts, understanding, summing up of our journeys with our PMR/GCA conditions and support through this wonderful forum. We are indeed blessed. All good wishes at Christmastime and for 2025 to everyone. May there always be light at the end of the tunnel. Xx
I would love to read the stories of people who have had a straightforward journey through PMR so we can see what, if anything, they have in common eg. weight, nutrition, vitamin supplements, exercise, previous health history etc.
I don't think any journey is straight. I think maybe you would think mine was because I never flared but like all of us there were struggles at the beginning and especially at the end. But never flared. Just shy of 9 yrs.
Thanks for your lovely comments. The support and information here is invaluable - you're right. It's been a huge help to me too. I'm about to join you in the 2.5 club and very happy about that! Happy Christmas to you too.
Yep, Thanks to all on here. I'm down to 4.5mg Pred after 1 flare and still only at 11months of it. I know a guy that was only on it 1 year at 65yrs old, and maybe that clouded my judgement as I reduced, and he's now 95 and looking good.
I can feel the stiffness in certain areas come on at night from about 10.00pm then take my pred as near to 11.30 pm, sometimes earlier or later. I've been waking just a little stiff until I get into the shower then am ok all day again. I think it's the PMR letting me know it hasn't gone away yet, but coaxing my adrenals into doing their bit. Once I feel settled and the reactions get regular and easier, I attempt to reduce the pred again.
I’m 3 weeks post diagnosis and very interested in what you said about the guy whose treatment only lasted a year. If you’re still in touch with him could you ask him to share his story?
I'll try to catch him over the next week or so, but as far as he told me when he heard I had been diagnosed with PMR, he just said that those steroids were good and he was ok within a year.
Many many thanks to all those who take the time to post on this site to support us, give us the answers which are often so hard to find and just help us all stick it out. There are definitely some very difficult days but you can always count on health unlocked to give you a warm hug when you need it!
Thank you SpaghettiWestern99 for sharing! Yes! ours is a road often not really understood by others--- but we have each other with the support of this wonderful group of experienced journey fellows -- and my experience is that I cannot rush it--- my body will remind me --- but it also is teaching me to honor what I need--- perhaps more rest--- less stress to help my body along in this journey!! As PMRpro says, it is all relative!! Enjoy your holidays!
I’m just about to do a long winded update on my PMR journey, so far, of my experiences and will post in the next few days, I’m down to 0.25 mg now fully for 2 weeks from 0.5 mg 6 weeks ago.
I have done a modified taper routine, I’ve had 2 “flares”, one at about 6.5 mg and an interesting one at 3mg.
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This is all new for me.
There’s no point to this post
Hello to everyone!
PMR Journey
