My question is this..how long is the average for staying on 20mg of pred? I was having troubles at the initial dose of 15mg so after two weeks of that I asked to go up to 20mg since 15 was not working well..what was the point, if I'm taking pred it may as well work, right? I stayed on 20mg for 32 days then after blood work my doc and I decided to start a taper, 3 weeks at 17.5, and now at 15mg since Nov 23...I seem to be having more than a few "bad" days, mainly wrist and hand troubles especially in the morning, some great days too though, but like today, out of nowhere a real dandy of a crap day..hands and arms almost unusable this morning..pretty disheartening really..my question is how long is too long at 20mg?? Ya know, if we were allowed to supplement prednisone with something like mobic or Celebrex things would go a lot smoother, just my opinion...I'm all for tapering down, but it comes with increased pain and stiffness it seems..maybe I'm not being patient enough...
Questions (always): My question is this..how long... - PMRGCAuk
Questions (always)
I'll be interested to see what advice you get from the wise aunties. I've been on 10mg for a few weeks and like you, I'm having some bad days. Don't think it's a flare, but quite disheartening anyway. I've been taking cocodamol and telling myself it helps a bit with the aches n pains. I'm sure you will get some good advice from someone here, and I'll just eavesdrop 😉
Hi,
I can only give my experience. I reduced every month provided my bloods were okay and I felt alright in myself.
Although the “recognised” taper from 20mg is in 2.5mg drops not everybody finds that achievable. Many try either 1.5mg or even 1mg a time. Plus of course you must take your personal circumstances into account- you may be trying to do too much just because you feel better on a certain dose, and then if you continue that level of activity at a lower dose your PMR reacts!
There isn’t a definitive answer on how long one should stay at any dose, in fact there is no simple answer to tapering with PMR or GCA - it’s really an individual thing. That’s what makes it very frustrating for patient and doctor alike. What suits me, doesn’t necessarily suit you or anyone else.
As you go along you will learn to listen to your body - that will tell you when to reduce and when to stick where you are.
The doctors may not like it, but the PMR is the one taking the lead!
As you say - no point in tapering if it results in pain! And unfortunately Pred is the only drug that controls the inflammation caused by your illness. Other medication has no effect on PMR.
The usual approach is to stay at the starting dose - "the lowest effective dose in the range 12.5-25mg" - for 4 to 6 weeks until the symptoms have all improved a lot, to clear out the accumulated inflammation. You may have tendonitis, synovitis and bursitis as part of the PMR, not just muscle pain and all those will take longer to fade than the muscle problems. The stiffness and muscle pain was gone for me in 6 hours with 15mg - what was left was the other structures. The wrist and hand pain improved in a couple of months, the hip bursitis took more like 5 or 6 months. The 4 weeks at each dose to be sure it is still enough and to allow your body a chance to settle down.
I think your reduction steps are possibly contributing to the problem - for some people 2.5mg at a time is too much. Just because you have normal blood markers it doesn't mean the cause of the PMR is gone - it means you are currently on enough pred to deal with the inflammation and you don't know how much you need - it pays to seek it slowly!
But it sounds as if you are finding the bad days come on the heels of a good day or two - which makes me suspect you are doing too much on the good days and then paying for it as a result. You have to do your bit - pacing and adapting tasks to avoid overdoing things. I get hand pain if I have to haul a suitcase around for example. Using the vacuum cleaner does it too - as well as going for my back. If your hands and arms are bad today - what have you been doing in the last couple of days? And has the weather changed? That will make a big difference for many people.
Apart from the fact that NSAIDs like Mobic or celebrex are really not a good idea alongside pred - and have serious potential side effects themselves, especially gastric and cardiovascular - for the vast majority of us they don't make the slightest difference to PMR pain. If they are helping, then it probably isn't PMR directly.
In my experience over the years
And especially after joining this super forum
A lot of the doctor haven’t much idea how to get the best out of this wonder drug.
One thing they really too much on so called markers. We are all different. When I said to old doctor. I have been lucky. No problems with pred.
He smirked “only an addition. 😱😩😬
Wow just reading your post again more better
I’m doing way too much on Good days darent say what 🤔😱
It's fine as long as you don't get payback - and wonder why!!!!!!!
They’ve said it all daworm. My sympathies! Certainly allow a few days of feeling a bit off after each taper. I wondered about another condition making its presence felt as well. I stayed at 20 mgs for just over 6 weeks and had a slow smooth ride down to 10 mg. I must say things got harder then. I echo what has been said about acting like a fully functioning person immediately, you can’t. Give those busy hands a rest. Is it cold where you are? It doesn’t help.
There is a booklet called 'Living with PMR & GCA' written by patients for patients and medically checked out where necessary.
PMRpro, who has just replied to you above is the co-author.
Have just read "Living with PMR and GCA", a new booklet by PMR&GCAuk North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago.
Eric Clark
Award Winning Author and Journalist.
It does cost £5 which includes postage.
I started at 20mg and my rheumie then wanted me to reduce to 15mg after three weeks which was a disaster. I then tried 17.5mg which also was pretty disastrous. I am obviously a precious little rose. I found by reducing 1mg over 10mg and then .5mg under 10mg (every four weeks) worked well. Some people are a lot tougher than me though.
As PMRPro says NSAIDS are not a good idea with pred. They don’t help PMR anyway, it is only if they are being used for something else. Even then it is a good idea to find an alternative if possible.
I'm tough as nails and I couldn't do 20 to 15 on doctor's orders. I wound up with a flare that nearly crippled me for 4 months.
I started a 1 mg/week reduction after getting my legs back under me in Sept. Down to 12 mg this week. No flares. I stayed at 14 for 2 weeks when I caught a cold. On some bad days along the way, I took and extra 1 mg or 0.5 mg, going back to the lower dose the next day. It's working for me.
It's not fast enough for my rheumy, but she's not living my life. And she works for me, not the other way around.
Be harder on your doctor than you are on yourself. It will make things better for you both.
I found that when I went down from 20mg to 17.5mg , it was too much. I talked it over with my doctor and decided to do the deadly Slow Plan with drops of 10% over a 5 week period. That seem to work better, symptoms seem to subside better and I have a little more energy. Bottom line is what works better for each n everyone of us PS. At one point I tried to drop an extra .5 ( to 17.5 ) but had to go back up to 18 That .5 made a difference
Perhaps I do too much, I try to figure out what would kick off a bad day but can't come up with much...have a beer, don't have a beer, eat sweets don't eat sweets, I can't really find a trigger...yesterday, as I wrote above, was crap, today..the exact opposite..feel pretty darn good..hands wrists, arms...they all work fairly well!! Mysterious this PMR...thanks again for all the advise and a great place to vent!!
Try keeping a diary - today is better perhaps because yesterday was bad and you didn't do anything to make your muscles sore?
That's a good idea! Makes sense.I'm going to try that too
I do keep a diary, my dr liked that idea too, yesterday, my worst day in awhile, I still went out and did some chores like snow removal, even worse, following the wife around doing some Christmas shopping...I thought I would pay dearly especially since I was already having a bad day...nope, not too bad at all..lucked out maybe but it seems like bad days or "mini-flairs" are usually followed by a much better day...the days sort of build up and get progressively worse till it's a really bad day, then the PMR burns itself out for a day or two...seems that way..probably not what really happens but who knows how it works...no one that's who!!
For the last couple of years since being diagnosed with GCA and now PMR, I've been up and down like a yoyo on pred dosage. After discovering this fantastic Forum I raised to 20mg (with the reluctant agreement of my Rheumatalogist)) and I'm now tapering 1mg per month. I'm currently on 18mg for 2 weeks and will then go to 17.5mg for 2 weeks and then 17mg for 2 weeks to stabilize the system. Etc, etc. I find that taking 5mg at 2am helps to reduce the morning stiffness. I take the balance (currently 13mg) with breakfast. So far so good!!
PMR pain does not respond well to pain pills. I can't speak from experience with the two drugs you mentioned but I can tell you that I take opiates for my chronic lower back pain and even on that it does not touch my PMR pain.
I also get extremely bad hand and arm pain. It's not a very common location for pain but it certainly is bad.
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