struck down with Polymyalgia December 2022 and just wandering where the journey will take me after taking steroids 15mg for a month dr suggested reduction to 12.5mg , this reduced to 10 mg for a month.
From February dr suggested a weekly drop of 1mg until reached 5mg after a couple of weeks symptoms came back and I am now back up to 8.5mg and struggling with discomfort in legs and buttocks
How long does this go on for think I should have dropped the steroids over a longer period of time
Yes, much slower. Water under the bridge now. You should, I'm afraid, increase to a level where your symptoms are properly controlled and stay there for perhaps as long as four weeks, but maybe two would be enough - others will weigh in on this! Then, because your initial taper was too fast, you'll have to be even more careful and slow when you restart tapering. Hopefully you'll be given the amount of pred you need to taper using a slow taper plan. And even though this may feel very discouraging and you may be tempted to speed things up a bit, remember "It isn't slow if it works". Avoiding another flare will also avoid having to increase again, or, worse yet, getting into a yo-yo effect where tapering becomes really difficult. Slow and steady wins the race and will result in a lower overall intake of pred. Our slow taper plans are to be found in the pinned FAQ post. I have used Dead Slow Nearly Stop, others have had good success with Tortoise Not Hare or DorsetLady's Simple Taper.
And always come here for support, advice, encouragement!
thanks for your comments I’m beginning to realise that what you have stated is true and next visit to dr I will put this to him and hope he sees that this is the way forward. In my ignorance once I’d dropped to 10mg for a month I felt really good and the dropping to 5mg over a five week period was too quick! A slow increase has had little effect on my symptoms but currently on 8.5mg and I think 10mg would be my next jump in a n effort to reduce pain and discomfort.
Your comments have been very encouraging and in fairness I gave been thinking that I would be back to normal within 6 months !
It rarely works creeping up. If you were good at 10mg and if that doesn't achieve a good result (you have to clear out the accumulated inflammation from the flare) I'd have a few days at 15mg and then drop straight back to 10mg before starting a 1mg at a time taper.
I left my doctor's office, after being set on a successful road to what I thought was cure, not just symptom control, believing I'd be done and dusted in three months!
Hi and welcome
Weekly drop of 1mg from 10mg - bonkers -guidelines say 1mg every 4 to 8 weeks…
Maybe have a look at this for general info -
" I should have dropped the steroids over a longer period of time"
Absolutely! You go at 1mg at a time form 10mg - but MONTHLY, not weekly! And even then you are not heading relentlessly to zero, you are looking for the lowest effective dose. The lowest dose that gives the same relief as the starting dose did. You need at least 3 weeks at a new dose before even thinking of going down again or you will miss the target, especially in the early days.
And you are in early days after barely 6 months, PMR is a chronic condition, pred is not a cure, it is a management strategy to allow a better QOL until it burns out and goes into remission which it does for most people unlike most autoimmune inflammatory conditions. But it takes years, Not months.
many thanks for your reply I will take on hoard your comments and I am beginning to realise that this is not going to disappear within a few months and I have to accept this
That's right - men tend to have shorter journeys than women but even they take a couple of years at least usually. And acceptance is key - you can't fight PMR and force it into submission. It tends to play dirty and win!
It took me 5.5 years to go from 15mgs to zero.I reduced very slowly and it worked.
It's a pity these in a hurry doctors don't read the PMR section in HU.
See my post today. I did the one mg taper every two weeks.
My polymyalgia
Polymyalgia Rheumatica and Steroid Side Effects: New Findings
Polymyalgia
Too good to be true?
Polymyalgia
