I seem to get down to 2 mg of prednisolone daily without any problems, but when I reduce I start to feel pain on the days I take 1 mg and I’m doing a very slow reduction programme. My rheumatologist thinks I should try coming off the Pred as I’ve been on it for five years. Feels As if my whole body aches and my hips are stiff.
Could this be Pred withdrawal pain?
Has anyone found going gluten free helps?
Hi Bobbikins
When you go from 2mg > 1mg it’s a 50% drop so try going from 2mg > 1.5mg but as you have reach such a low dose it might just take that bit longer to do the reduction.
Good Luck 🍀
MrsN
Thank you for this.
Going to Paris on Tuesday with my granddaughter. Unfortunately I’m in pain and I wondered if I should up my desk for a few days?
Hi, Wow Paris with your Granddaughter, how Fabulous & most certainly adjust your dose for such a lovely occasion. We don’t advocate to do it all the time but your dose is very low, you can return to 2mg when you return & then start the slow, slow reduction then & drop by 0.5mg.
Have a Wonderful Time
MrsN
Thank you for your advice. I’m definitely in pain And I want to enjoy Paris. Should I add 5 mg to my current dose for a few days and then return to the Dead slow nearly stop at 2 mg?
Sorry Bobbikins, l drifted back off to sleep.
Personally, l would only increase to 5mg in total, starting today but take additional with me to be on the safe side.
Have a lovely time.
MrsN
Hello. I’m flapping about in the same dose range currently and also recently travelled. I did 2mg on travel day and the day after then back to usual 1.75mg. I find at this level my body notices that something’s up by the end of the day rather than 1-4 days when higher up. My body generally registers pain all over (I only have GCA) and I sweat all the time mainly in the face and my brain goes to mush. 0.5mg was too much so I fiddled about with a pill cutter and did half a half to give 1.75mg. I don’t know if it was psychological but it felt a lot better. Being on coated Pred I do a 1mg coated and the chopped uncoated ones a few hours later with breakfast.
Your rheumy is a prat. Sorry - not feeling particularly charitable this morning!!! What does he want to do - send you right back to the beginning? Because if the underlying autoimmune disorder is still active, sooner or later the inflammation will build up to a level that puts you back in that state.
It is your body telling you that you have arrived at the dose you are looking for: the lowest dose that manages the symptoms as well as the starting dose.
So you have been on pred for 5 years? Offer him this article to consider - and the link to the original article is at the bottom:
medpagetoday.org/rheumatolo...
The median duration of pred management is 5.9 years - you are well within that. And over 40% of patients still require pred after 10 years, albeit mostly at a low level.
You MAY get lower with a smaller drop and extended DSNS, but if you don't, it doesn't matter as 2mg is such a low dose the doctor should be rejoicing you got so low. And take what you need to feel good for Paris and the granddaughter - if it needs 5mg it needs 5mg but less might be just as good.
Whatever that dose is, it is where you possibly need a bit longer. There is no virtue in forcing your way to a lower dose just to be at a lower dose. My success in living well with PMR is entirely due to my refusing to compromise over dose. Luckily I have 3 doctors who agree with me that Quality of Life is all.
My rheumatologist (it’s a she) has given me conflicting advice. Eight months ago she said I must be over the PMR as I was on such a low dose (2Milligrams daily) and should reduce when the weather got better. The next time I saw her and I was reducing she asked if I felt Pain on the 1 mg days (DS NS). She then said stay on 2 mg, but she had alarmed me The previous time by saying my immune system
Was being suppressed and if I needed surgery ( as I’m 71) may be a problem.
! Have been on 1 mg (new dose) and 2 mg for four days for about 10 weeks now and I’m having a flare. Bad leg pain and aching shoulders and feeling tired. Last time I had a flare she put me on 10 mg for a week and I felt manic. I think I need a boost in order to get to Paris and enjoy it. last time I had a flare she put me on 10 mg for a week and I felt manic. I think I need a boost in order to get to Paris and enjoy it. Is that 5 mg +2 mg or just 5 mg for a few days and then back to 2 mg
2mg is such a low dose it won't have the slightest effect - there are quite a few who have had hip replacments on 10mg.
You need what you need - and only YOU can assess that. When did you last feel good? You could try 7mg for a few days and drop back to that dose - that is what top rheumies say, add 5mg to the dose where a flare happened. From what you say, 2 or 3mg may well be enough if used consistently and that is where you need to stay for a few months before trying a small reduction and seeing how it goes.
Being on 2mg is NOT a sign the PMR is gone, it is enough to keep things under wraps which is what you were aiming for. Take it away and she and you will soon find out if the PMR is still there - but then it is a bit late.
H,
Many on here have had an operation (do you actually need one? ) whilst on higher doses than 2mg. She talking through her hat! Anyway, should you need an operation, it’s up to the surgeon and anaesthetist to decide on medication levels, not here!
As PMRpro says you need what you need, and at the moment you obviously need more than you are on!
Try 7mg for a few days, get things under control and then drop back down - maybe not to 2mg that doesn’t sound quite enough, maybe 3mg or 3.5mg.
You are on a very low dose anyway, and therefore nothing to speak of in the side effect line, but we have all discovered that the difference of 1mg or even 0.5mg can be significant.
Find the right dose for you...and enjoy Paris.
I’m similar to you Bobbikins, 5.5 years and on 4mg. It’s taken me a year to reduce 1mg (by .5mg each 6 months). We are all different and I can’t get lower yet. I haven’t given up entirely but when I’m ready.
Your body is telling you things aren’t right and you can’t ignore it. If it’s withdrawals they should go in a couple of days. As you’re going away take a little extra for your wonderful trip and hope you can enjoy it. You can adjust when you get back. You might have found your optimum dose at 2mg so don’t try to go against it.
Thank you for your advice. It was much appreciated.
I find this website far more helpful than my rheumatologist’s advice.
Six month ago she insisted I reduce and get off Pred whilst happily on 2 mg and at the next appointment six months later she
advised me to stay on 2mg As it’s such a low dose and will protect me from the pains of old-age!! She had said that she was concerned about me being on Pred in my 70s (I’m a fit 71-year-old) as it may impact my immune system in case I need surgery. I’m not aware of needing any surgery at present!
She has completely contradicted herself And left me feeling confused.
I took 7 mg for my Paris trip And it meant that I could walk around with my granddaughter so thanks for the advice.
My rheumatologist is NHS and no doubt overworked. She will call you back within a couple of hours if you have a question or a problem and is very kind
and supportive but I guess she can’t be an expert in one field of rheumatology. I’d quite like to see somebody privately who specialises in PMR. Wondered if anyone could recommend a consultant who is in London and is really experienced in treating PMR? Thank you to everybody who sent me advice and support. Granddaughter and I had a great time in Paris.
I am really happy you had a good time in Paris. I know of people on a maintenance dose of 1 or 2mg for years so maybe she did a bit if research. She sounds like she has a good bedside manners which is great!
You might want to post a request of info re private rheumy. There are a few in the south east I think 🌻
I wouldn't hesitate to try Rod Hughes at Chertsey
drrahughesrheumatologyltd.com/
He does both private at Runnymede and NHS at St Peters
Concerned - advice welcomed!
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