As I was feeling like crap a couple of weeks ago, I did not reduce from 45mg to 40mg, as planned. It was disappointing, but it was for the best. And then, last weekend, there was the "Party like it's 1999" London gig, so no reduction there.
Now, still looking over my shoulder, but seeing nothing but shadows, I've decided that today is the day, that I will attempt my biggest feat ever!!!! Yes... you will see, with your very own eyes (if you can see through that steroid induced blur), without the help of an Assistant, I will attempt to reduce my Prednisolone intake to only 40mg a day!
TAA DAA!
It will be the LOWEST number of milligrams I have been on, since November 13, 2017 and I was only on 40mg then, for a few days!
And of course Alibabba and his 40 thieves. Good luck Melissa, try not to put too much pressure on yourself, it’s just a number, and as we all absorb uniquely, fairly meaningless. It is a shame that whenever we are doing well, we reward ourselves by removing a little more of the Pred. It would be no way to train a dog. Are you happy with a 5 mg drop, rather than say a 2.5 mg drop? Forgive me if I’ve got your numbers wrong. To us PMR “only” folk 5 mgs seems HUGE. 🐘🦏🦍
On the other hand your own intuitive sense is the best guide we have in this.
Wishing you a really easy ride. 🧘🏼♀️ Help things by avoiding the mammoth spring cleans. X💛
Can never forget Alibaba and his 40 thieves... wonder how I missed that one? And yes, you'd give the dog MORE biscuits, not less!!!!!
Shhhhhhh, I secretly dropped by 2.5 on Tuesday and have been GREAT since, so I'm taking the plunge again only 4 days later... might be a huge mistake, but I'm an inpatient, rebel! (Don't tell GG!)
The rheumy has had me dropping by 5mg every 30 days (from 80) and it seems to have been working so far, we'll see...
No more cleaning since Monday... this week has been very relaxing; filled with my taking photos of "stuff" and putting out on eBay! By this time next week I expect to have made a fortune! : ) hahahahahahahahahaha
Just so you know, I was one of the original hippie radicals, complete with flowers and peace signs and protest signs (and I still won't wear white socks with my sneakers).
Fingers and toes crossed for you, such as I can these days.
I think I made my point. Or rather, you did. By having some better days.
You're past the worst of the angry, sad, depressed part now. The lower doses of pred makes all that less intense. Like the rest of us, you'll have your less-than-great days on the journey, But now you know you will, indeed, have great days.
Yeah, I'm glad I told you so. I'm glad you heard me. I'm glad it happened.
You did... and THANK YOU for slamming my head against the wall until I finally listened, and believed you! That is what you have to do with people (thick headed, rebellious, know-it-all types) like me! But most people give up before breaking through... you just kept saying the same thing, over and over! Good on ya! I did not think 40 mg was a a "lower" dose but apparently lower enough from 80 to make a huge difference...
I'm glad you "told me so" too! Even though I may not have consciously believed you at the time, in my heart, it was good to hear and deep inside my unconscious it gave me hope.
At the moment it sounds like you are finally getting inflammation under control a bit. Fingers crossed the boat isn't rocked. Get through the first few days and hopefully it'll stick!!☠️
• in reply to
From your mouth... to God's ears! xxx
Is that the one at the garden centre.? Boom boom. Thanks for the lead in.🌻😁
Poopadoop - What an excellent memory and ability to 'connect' threads. Certainly your pred brain isn't affecting your sharp brain or wit. Thank you for making me smile.
I am daring to 'predict' it will ALL be fine ... so have fun over this weekend - and don't forget to have cheese with the wine (the fat to mediate the sugar that WE must have).
There is some pecorino with whole black peppers in our fridge already - just waiting for me -not to everyone's taste (maybe unless grated on pasta) I know but I adore hard cheeses with some olives.
Wish I could say 'I'm coming over now' Melissa - we obviously share many tastes!! We may however - in reality be 'up there' some time next year as Ruth is keen to do some long walks in the UK and we also really want to spend some more time in London in the galleries/museums etc etc. So perhaps one day before TOOO long we can share some of our favourite goodies and more importantly each other's company .... in the meantime we will both just keep on getting 'better & better' - and YES I 'predict' it WILL happen !!!
XXXX
TOTALLY COOL! That would be fantastic! Yes, let's both keep getting better and better so we can really enjoy it!!!! Brighton is such a FUN town!
You are now on 50% of your final highest dose. I am on about 55% of my starting dose. You are 6months plus in I am 2 years in. You are in relative dosage terms doing better than me. Well done!!
• in reply to
NO WAY! That can't be right!! WTF? Are you serious? Why haven't you told me to shut the hell up???? Why have you allowed me to go on snivelling like the big cry baby I apparently am?
Wow.... I feel a fool!
I had no idea!
I'm so sorry......
😳
• in reply to
It was meant to make you feel better!!! 🤢🤑😂🤣😀😫
Sometimes it's hard to see just how good the progress is. Don't forget I started on 15mg and when you get down to those doses the percentage gains/losses are much much smaller in terms of actually dosage.
Please don't apologise. You have had a tough few months and it's been a rollercoaster following your progress and I know you have helped AND entertained us. Not always an easy thing to do 🌻
• in reply to
I just feel kind of silly... as I have bitched and moaned A LOT!!!! ... BUT if I have helped in ANY way and more importantly if I have "entertained," than I don't feel too bad! And, I see your point... starting at 80 is different than starting at 15... but still!
You ROCK and I have so much respect for you and ALL the others who have been dealing with this shit for YEARS!
The past 6 months have been a living HELL... and there were many times I crumbled and fell apart. The thought of doing this for "years," is almost inconceivable... but I see that many have done it, before me and that gives me HOPE!
My wish is to keep on entertaining you and "ranting" about concerns, thoughts, and feelings that resonate with you (and others) If I can tap into the fear, doubts, concerns of just one person... to make them realise they are not alone on this emotional roller coaster of a journey, than I will have succeeded and my purpose on this path, validated.
Yes you do entertain us and if that helps You in any way, thank God! I feel bad that you are suffering so much. It’s so hard to go from a active happy life to this crap, and I am no where near as bad as a lot of people on here. Stay strong.
Oh thank you!!!! That made my day!!!!! Thank you!!!! : )
It is hard to go from one life to a total opposite life! ...but there's a "lesson" here; in going from a busy, crazy, hectic, active life, to one of introspection, self assessment, rest, quite... I'm still trying to figure out what that lesson is, but I know I am supposed to be leaning something! Thank you !
That’s what I keep thinking “ I should be learning something “ maybe in time it’ll come to me😕 We retired last summer, sold our house, packed up our house, moved. When got to the new house we had all the unpacking settling in, tearing out the landscaping and starting over! Then we had Christmas...Too much work and a lot of stress at our age. I got hit with PMR in February ☹️ End of that story. I am learning to pase myself some. Yay
Wow! Bummer... you got hit, just when you were supposed to be starting a new life of fun, rest and relaxation! That sure stinks! : (
I guess I was lucky, I had 3 good retirement years before I was diagnosed with both PMR & GCA. I worked part time at the hospital and at the local hospice, as and End of Life Companion and a Chaplaincy volunteer. I had an active social life, my husband and I traveled 2-3 times a year... and then it all cam to a crashing halt!
Ahhh well... it is what it is. Be happy and be well!
And those of us who were born to be Mary not Martha actually welcome the excuse to be introspective and not wearing ourselves out with the demands of modern living....
Thank you!!! It's weird, I just never realised (as Poopadoop mentioned) that in terms of "relative dosage terms," I could possibly be doing better than anyone else!!!! In 6 months going from 80mg to 40mg, didn't seem like such a big accomplishment to me at all!!!! I just assumed I was bit slow... ; )
You seem to be but in the beginning it is an easier ride though, not to deflate your ego by any means you are doing well but you will have to slow down as you get to 10/9/8 etc - and that's not a date for the diary! It goes back to being patient then!
Yes, I already know that once I hit 20mg (in September, hopefully!) my Rheumy will put me on a "DSNS" plan... I am mentally preparing myself, for a year or so of little to no change in dosage. As long as I can feel "relatively normal, and get back to my volunteering at the hospice, I'd be sooooo happy!!!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
GCA or not update 
Methotrexate...again!
80 to 20
Starting reducing 
Vasculitis/Tocilizumab
