I have had PMR since Oct 17. I was put on 15 mg of pred. Was in a terrible state as I am also type 1 diabetic but managed after a few weeks to cope and get my diabetes under her control. Been doing quite good reducing very slowly and got down to four pred. But over the last month the pains in my legs have got bad also a bit in my arms. Yesterday I went to GP and he has put me back up to ten pred and told me to reduce to nine after a month and eight after another month and so on.
My real question is will this happen again when I eventual get down to four or will I be able to ever be pred free. Many thanks Kathy m.
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Kathymilner
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Maybe, maybe not. Although you say you have tapered slowly,to get from 15mg to 4mg in 19 months seems quite quick to me. In answer to your question, at the moment 4mg is a bit too low to deal with the inflammation.. next time you get to 4mg it may be enough to cope.
But....bearing in mind the average duration of PMR before it burns itself out is 5.9 years, you will probably need a low dose for quite a bit longer yet. So in answer to your question’Will I ever be pred free?’ ‘Not yet!’
Although your GP has suggested you go down 1mg a month from 10mg, others in your position having flared have gone to a higher dose for a few days, and then gone back to the last dose which held the symptoms at bay. Was that 5mg for you? Or have you had some aches and pains before you got to 4mg? You could maybe discuss with GP.
It then might be sensible to reduce by .5mg each month, maybe using a slow taper (put slow taper into search box top right). This would ensure you don’t overshoot the right dose for you.
Doses below 6mg rarely have side effects, and some people are on very low doses for a long long time. And others (not many according to this forum) are through it all in two years. Lets hope you are one of the quick ones!
Thank you Mary63, it’s useful to have other opinions. I had another flare through stress and the doctor I saw then told me ten mg for a week, then I tapered quite quickly down to 5 at that time and was ok until this.
It may happen again at 4mg - you are never reducing relentlessly to zero, you are looking for the lowest dose that manages the symptoms as well as the starting dose did.
But I think that telling you to reduce so slowly from 10mg again may be a bit OTT - in cases like this where you probably overshot the dose you need, top experts suggest adding 5mg to where you flared but only for a week or so and then dropping back to above where you flared. So you could probably go straight back to 6mg, certainly 7mg and even that puts you 3 months ahead of your GP's idea. Mind you - hallelujah for a doctor who realises the value of slow!!!
Thank you for that, I was sort of thinking that way myself. I am type 1 diabetic and underactive Thyroid too so the pred play havoc with insulin levels and thyroid meds so lower pred the better for that reason, think I may do 10mg u till I feel completely pain free the A’s you say go to 7 and start tapering from there.
Hi Kathy, my PMR diagnosis was Sept, 2013. I am currently experiencing a flare of symptoms, and have raised my pred dose from 3 to 7.5 mg. I plan to stay here for a bit, then resume a slow taper (for the 5 or 6th time).
This disorder does not have a straight line trajectory, and under no circumstances is the early goal of tapering to "get off prednisone."
I will say, ....that was my first goal....., and I bumped along a very rocky road, till I finally heard PMRPRO say, The " goal is not to get to zero, but to get to the dose that manages the inflammation ". ( Apologies to Eileen for the very loose quote...but point made.)
From there forward, my taper has been purely based on my symptoms, and How I feel. It seems when I am ready for the next incremental drop of pred., my body accepts it, and I can proceed with few problems.
I do not have Diabetes, and understanding the complication that presents, I have always been extremely conscious of carb consumption and healthy eating.
Regarding Nocturnal leg pain, I use Paracetamol, and a homeopathic remedy called "leg cramp" or "restless leg". Its available at health food co-op, and it works! Also, non narcotic. Probably good idea, of course , to check with diab. Doc.
Hope you find some relief, keep up the good work! This will get easier as you continue to learn the "tricks" for managing PMR, etc.
Thank you Purplecow, the GP did say the same as you about the dose that manages my symptoms so I am beginning to ecept that when I get down to a manageable dose I may have to go even more slowly next time, it is hard sometimes juggling three autoimmune problems although I do just get on with it all until the pain starts then you do have to take action because I can’t cope with everything else when the pain stops me living a normal life. Thanks again. Regards Kathy x
I started my PMR journey August 17 and am struggling to get to 9.5 so I think you have done well so far , maybe you just dropped below what was required by your body , so my very inexpert advice would be to take it very slowly from now on , I'm doing .5 on FSNS method !
Hi I have cut and paste this from a post by pmrpro a while back and it explains dead slow method. Hope it helps. Pmrpro said...
"My reductions are VERY slow. I use the following pattern to reduce each 1mg:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.
This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis."
Hi, I also started July 17 and was stuck on 6mg for 6 months with raised inflammation according to rheumy and blood tests so she put me on Methotextrate in Jan 19 and that has enabled me to reduce to 4.5. Inflammation down to 5 from 28 in December so hopefully will be able to keep reducing. I use the .5mg a month on a slow taper that is currently working.
Hi dancersize, that sounds good, I havnt seen a rheumy which with all I’ve got going on you would think one of our GPs would have referred me by now. I have noticed a few people on here see a Rheumatologist, I have thought about going privately, although my doctors are quite good.
In my humble opinion...a rheumatologist has the same learning curve as everyone else, and very few answers outright. If yourcurrent/ primary care doc is managing your care to your satisfaction...no need to chase after the hard-to-get rheumy.
My rheumy is a charming young woman who met me at the door with the following wisdom, "you will be on prednisone (horrors) for a year, your blood sugar will go up, and you will gain weight."
After 5 years, she was mostly wrong on each count! No weight gain (watched carbs, etc.) blood glucose as monitored by my GP is normal, and I'm still on prednisone 5 years later.
Her efforts of monitoring me have been infrequent (every year or so) blood draws, of zero usefulness as i never have had any blood indicators.
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