I'm just curious if others also find it harder to reduce their pred during the winter?
This is my second year on it because of PMR and I'm getting nowhere with trying to reduce. Currently alternating between 4 and 4.5 mg. Both summers I've made some progress by cutting down by 0.5 on alternate days, but no progress now since November. Every time I try I start to feel stairs are insurmountable objects again. Getting stuck is a bit disheartening... But if it's seasonal that's more hopeful!
Thanks in advance for any thoughts or observations.
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Fergyfish
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I agree with your observation that tapering is harder in the winter. At your low dose I wouldn’t be too worried, it is negligible for serious side effects and to go really slowly suits the recovery of your own Adrenal function.I have to say that alternate day reducing never suited me. I was much better reducing low dose one day a week, then 2, 3 ....... until I was at the lower dose every day. A proper description of dead slow nearly stop tapering is in a pinned post on the right of your screen I think.
How long does the heavy legs symptom last? Withdrawal from Pred can last a few days and will respond to ordinary pain killers - a building flare will not. Good luck with your efforts, I can certainly see signs of spring where I am.
Yes it can be harder in winter (and this winter has been more difficult than usual!) - in fact one eminent Rheumy did once suggest not trying during winter months.
If you are 2 years in and down to below 5mg that’s pretty good going....and I would take it as a bonus. So stay at a dose where you feel good - and wait for better weather. ☀️
It can be harder in the winter and a few rheumies tell patients not to bother trying to reduce over winter!However - it isn't a question of a course of pred and then taper off to zero. You are never reducing relentlessly to zero, you are tapering looking for the lowest dose that manages the symptoms as well as the starting dose did. And I'd say you have probably arrived at that destination for now. It doesn't mean you won't get lower, just not yet.
I recognise the heavy legs and stairs phenomenon! No point trying to force it - I think it makes you go backwards.
Thanks... Its good to know it's not just me! I know we have to taper slowly and believe that taking too little pred will just mean Ill need more in the long run.. But sometimes it's just all a bit disheartening ....
I usually give it a week and if its still bad i resume my previous dose for a while again, assume that's where my body's at....
I might try the dead slow method... But am. Not sure my head is up to knowing where I'm at with it! Brain fog is alive and well!!
It is hard to get your head around I know - but you are at a low dose that no sensible doctor will complain about. The median time to get to 5mg is just under 18 months (for half of patients to get there) so you are about on the curve. Enjoy feeling well at a low dose.
My Rheumatologist issued me with a little booklet where I could keep a note of my dead slow nearly stop tapering progress. Later I got a little notebook and did my own record of dates, days, doses. Nobody has a more mushy brain than I do, my world is full of prompts and reminders. 😉
If it helps, I map out my daily dose of pred a week at a time on my calendar - in pencil! It really helps when tapering and you can't remember where you have got to. A weekly dosette box is also a miracle helper. You can always confirm what you have taken in ink afterwards. It helps to show any patterns as well. Brain fog seems to be a very sturdy companion most of the time.
When Ive done the dead slow way I write my daily dosage in my diary, as I would never remember what dosage I should be taking on what days. It works well. Hope you sort it out as to what suits you best.
Hi I live in Australia so in our summer here. Have managed to get down to 1mg predisoline 3 times a week. What has helped me I have been taking 25 mls of liquid turmic,ginger and Black pepper and it really helps. Give it a go may assist you.
Hi I have had PMR since May 18 so nearly 3 years and find winter awful - especially damp days seem to make me much worse- am on 3 mg and staying on that till spring-5mg and under is a nice low dose so try not to worry
Seems like i need to add a notebook or calendar to my 7 day pill box and get more organised.... once the weather starts to improve.Thank you for all your observations. It always helps to know I'm not alone with this and be reminded that I'm actually doing pretty well with it.
Good to read this, I’ve been on Pred for 4 years and last summer in Spain was down to 2.5mg a day, you can buy 2.5mg tablets there. Got back to U.K. (isolated for 2 weeks!) had to start cutting a 5mg in half or a 1mg in half and was in pain again so been stuck on 3mg since then. I really thought I would be off steroids altogether by this Easter! I hadn’t thought about seasons affecting it. I’ve asked doctor here for 2.5mg tablets, a friend from another area assures me they are available in U.K. but I’ve only been given 1 or 5mg. Anyway gives me new hope that come the summer I may succeed. Thank you.
The enteric coated pred comes in 2.5mg brown tablets - but they are absorbed much more slowly than the plain sort so if you think the presentation makes a difference they might not be best for you.
OTOH, plain pred is available as 2.5mg yellow tablets:
I’ve only ever had white tablets. Perhaps the absorption rate is why they are not offering me the 2.5mg ones. Anyway it’s not a huge problem and we may get back to Spain sometime so I can stock up then. Thank you for the input.
Strange what doctors don't tell us! I knew there were 2.5 mg tabs from a friend but wasn't given a choice of coated or not, or info on absorption.My doc thinks I'm a bit bonkers reducing by tiny amounts on alternate days, but isn't arguing with me....
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