hi everyone one love info on reducing pred can't seem too get below 4mg been there 3 times now and had too go back up. Tried doing 1/2mg but still no luck. How long can you stay on this medication, I have been on it now for 16 months. Doctors have left me too my own devices, only seen a specialist once at the beginning when I was diagnosed. Would be glad of any advice. Thanks.
P mr reducing : hi everyone one love info on... - PMRGCAuk
P mr reducing
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Snnib
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43 Replies
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DorsetLadyPMRGCAuk volunteer
Hi, two answers -
1. A heck of a lot long longer than 16 months
2. As long as your illness requires.
You are not reducing relentlessly to zero - you are trying to find the lowest dose that controls your symptoms. For you at the moment it appears to be 4mg.
It’s a very small amount, virtually no side effects, so stay with it at the moment - doesn’t mean you won’t get lower, but not yet!
Give it another couple of months and maybe try again - 0.5mg and a slow taper - one of many linked - healthunlocked.com/pmrgcauk...
For info -PMR can last anything from 2years to nearer 6, so think yourself fortunate that you’ve got to 4mg so quickly.
Thankyou. It's the unknown that , that doesn't help. Will keep up to date on here now. Better than my G.P.
This will give you a bit more info, even though you’re not new . -
healthunlocked.com/pmrgcauk...
Info needed. Keep getting sharp pain in head not all time just occasionally on 4mg pred at moment. Was wondering about GCA
Doctor said most unlikely when on steroids also feeling a bit aches
In shoulder arms and new too me knees. Any info most gratefully received.
"Doctor said most unlikely when on steroids"
What world are they in? At 40mg maybe but at 4mg it isn't going to make any difference to GCA - if it would that is the dose they'd give us!
Definitely sounds like a flare of the PMR at the very least. Have you reduced to 4mg relatively recently? How long had you been on 5mg beforehand?
Been on 5mg for l month had too go back up from 31/2 been on 4mg for 3 weeks. Tryed getting down 3 times now. Think I might have too stsy on 5mg for a bit.
You are never reducing relentlessly to zero - you are looking for the lowest dose that gives the same relief as the starting dose. You have found it - at the lowest, 4mg, maybe 5mg. It is a sign when your body refuses to let you get lower at the same place more than once, It doesn't mean you won't get lower - just not yet. But also, the lower you get, the slower you need to go - you must be getting closer to the dose you need and also the adrenal function must wake up.
One of the really good rheumies we talk about quite a lot on the forum likes to keep patients at 5mg for up to 9 months - it lets the body catch up, is a safe low dose and not doing any harm. And then he finds the next steps tend to be easier for many patients. I'm not suggesting 9 months - but 2 or 3 months rest from tapering now won't hurt.
Thankyou for that advice will take it all on board. Might go back too 5mg for a few weeks.
PMRpro has said and asked what I would have.
DorsetLady has given you great info.
We all handle this differently, but this worked for me to date: I when I got to 4mgs I reduced by .25mgs using a DSNS taper.
All the best
Thanks
Hi everyone it's me again. Been trying too reduce again but been physically sick got down to 3on preds but thinking of going back up too 4 and staying there would be glad of your opinion. Read the daily message and find them very helpful. Don't think i have done too bad when I read them. Thanks in advance for any advice.
You would be better starting a new thread - replies in the middle of a sub-thread like this aren't notified to everyone, it's a quirk of the nesting system here. Most annoying.
Do you mean you are suffering nausea or that you have been ill with an infection? Anything else? That can be sign of poor adrenal function which is likely at this dose level. Snazzy has just written a really good reply about it on another thread:
PMRproAmbassador
I've been on pred for 11 years - I haven't crumbled yet.
I'd say the same as DL (word for word in some parts) so I won't say it again.
When your body protests at a reduction being too much once it is saying "hang on" - when it happens at the same place again it is saying "you've probably arrived". When it has happened at the same place 4 times it is saying "you've definitely arrived". Listen to it!
Yes. I guess you may need to reduce your expectations! Not your fault, as doctors invariably say PMR lasts for two years.
In my case I stopped worrying about it when I read that the median length of PMR, when treated with prednisolone is 5.9 years. I have had it for 5.5 years and am at 1mg per day.
Of course, you may be one of the lucky ones, and yours goes into remission earlier, but my advice would be not to bank on it. I got to 5mg relatively quickly, but it's taken me another two and a half years to get from 5 to 1mg!
Like you, my GP has left me to my own devices, so I have followed this forum, and listened to my own body about when to taper down.
You certainly need patience!!!
Good luck
Paddy
thanks appreciate all the info.
A lot of people on this board would give their eye teeth to do as well as you have. Some people are actually on steroids for life at a low dose, so don’t worry too much about being on 4mg for a while more. Hang on and you will be able to reduce when your body is happy.
I have difficulty getting below 10mg and have been told b y my doctor to reduce slowly at that dose - 0.5 a month at best. I am told I might never be steroid free but will get down to a maintenance dose.
No one ever said anything to me about maintenance dose, just told to keep reducing by 1mg. Wish all these doctors. Were singing off the same song sheet. Very confusing. Think I'll just keep looking on here, seems people who have PMR know best. Glad of all info.
There is a great deal of opinion amongst doctors that PMR only lasts 18 months to 2 years due to an early medical paper that quoted that time span. That sort of reduction schedule would take most patients to that sort of time. Unfortunately, PMR lasts a LOT longer for many patients and what they shoud be saying it reduce 1mg per month UNTIL you have a return of symptoms. Then you have gone too far, go back to the previous dose and stay there for a few months and every so often try a tentative reduction to see if you can get lower. But since they don't believe patients reporting symptoms they often tell them it is the pred, or now they have something else or it is imagination.
It took my mother months to get off of the last 1/2 milligram - once she did, she lived another twenty five years in remission - hang in there!
My Doc has the same attitude - that PMR last for a finite time (18 months to two years ) so doesn’t react well to still getting symptoms after that time . I’m on 4 mg ( from 40 mg two years ago ) and ache in my shoulders and my hips especially in the mornings and can’t push up from kneeling without using my arms ,ever ( I feel like someone’s kicked me up the arse most of the time ) surely this isn’t right ? I think we need to listen to our bodies and up the meds and go again . 🙂
Find a different doctor who is realistic and up-to-date.
I’ve just spoken with my doc (yesterday ) and in his favour, his opinion has improved very much since my last conversation with him .. I’m getting bloods done next week to see if the PMR has flared up and he also has suggested I could be suffering with muscle weakness from the long term steroid use .. ( I’ve been on them for 2 years and 2 months) I’ll see how that goes 😐
Your comment about feeling as if you've been kicked up the bum - could you have piriformis problems? That can cause awful buttock pain and it too appears alongside PMR being part of myofascial pain syndrome.
I’ll look that up before I see my doc thanks 🙂
I also ache in a morning take quite awhile too come round but just listen to my body. Certainly slows you down this PMR. HOUSE WORK TAKES TWICE AS LONG AS DOES MOST THINGS.
Not me - twice zero is still zero 
Don't quite understand this remark.,,??????
Zero? Really zero? That's not possible is it?
Depends how you classify it - I do cook and wipe things down ...
😂😂
The washing up, clothes washing, bed, breakfast, etc etc.
Just washed a frying pan - I admit. But himself used to do that, then there is the dishwasher. And he doesn't do washing ... OK, I exaggerated ...
Thanks PMRpro. That sounds just like me. 😊
I have found a tapering regime has helped me to reduce, only 0.5mg per time, but when I go below 10mg, have had visual changes. Optometrist has been great, and diagnosed 'false' migraines (no pain), and recommended I do not lower the dose any further until I have been free of episodes for at least 4 weeks. A hematite bracelet has helped, something I would not have thought, but for me a relief.
I first came on here over 5 years ago because even after 3 years on Pred I still couldn't get below 5 Pred as my rheumatologist wanted me to. Actually thinking back, my GP was fine with it, it was me that pushed for a rheumatology appointment thinking I was abnormal. I was told quite clearly by the experts on this forum to be patient and that I wasn't unusual. Every case of PMR and everybody is different and you have to find out what is the right dose for you, which should reduce in time but not necessarily. I pushed myself to get off it too soon and have paid the heavy price, I now need far more Pred. So I'd say be patient. If you need to be on 4 or 5 for a long time even forever it is not a problem. Better to have mobility than pain and stiffness.
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