hi all I was told to reduce pred 1 mg a month, every thing seemed ok when I was on 2mg a month. At the beginning of this month down to 1 mg, since then have suffered all the pain back again feeling sick all the time, no appetite. It really feels like it was when I was supposedly misdiagnosed. Any help would be gratefully received. I will be contacting the Dr tomorrow to see if this is withdrawal symptoms and how long does it go on for.
Seventy year old mail living in US will be interested in replies to your situation since I have been told to reduce by 1mg/wk. Currently at 7mg and will reduce to 6 this coming Fri. As an aside, was told by rheumatologist that the difficult part is going from 10mg to 5mg and easier going from 5mg to 0mg.
I wonder where your rheumatologist picked up his info about PMR. So wrong. The lower the slower you have to go and the closer you get to the lowest dose which manages your symptoms the harder it is to taper. If you are reducing by 1 mg per week and you have PMR, brace yourself for a fight with your doctor. You need what you need to control the symptoms and PMR lasts for several years, not a few weeks or months.
See my reply to Rick. With a relentless taper at this low dose you are probably suffering both withdrawal and a flare of the original symptoms because your dose is no longer enough to control the symptoms. Too many doctors simply haven’t got a clue how to use pred to treat PMR because they are used to giving pred as a short term treatment for acute, not long lasting, conditions. Reducing once a month is reasonable, but not once symptoms start to return. Then you need to go back to the last dose which worked well, and wait a while before trying an even slower taper.
Rather you than me. You are getting to the point where your adrenal glands will need to start working again which is tough on the body. It is normally recommended you hang around on 5mg for a couple of months even. How long did it take you to get to 7mg?
Sed rate has been normal for 3 mths. During those three mths went from 15mg to 10mg and then began the 1mg/wk tapering. Currently no symptoms.
Hi Kathleen, I am at 5 just holding at this point. I will start my next DSNS taper from 5 to 4.5 mg probably next week. The taper cycle will take 54 days, then I will stay at 4.5 mg for awhile letting my body adjust before starting the next taper cycle to 4 mg. I am a very active positive thinking, PMR pain free, year old with a smile . Taking very slow and easy!
Because you are still on high enough a dose of pred for there to be no inflammation which is what raises those blood tests. The lower you get - the closer you are to the target: the lowest dose that manages that inflammation. The fact they are normal doesn’t mean the autoimmune disorder has gone away.
You are never reducing relentlessly to zero - you are tapering the dose of pred to find the lowest dose that manages the inflammation that is produced every morning as long as the underlying autoimmune cause of the symptoms we call PMR lasts. It is what is called “self-limiting” which means that at some point this autoimmune part will burn out and go into remission so it no longer attacks the body but that only rarely happens in less than 2 years and the median time pred is required for is just under 6 years. If you are lucky that dose is in low single figures but everyone is different in the way they respond to pred and how much they need. But it does nothing about the illness itself, nothing is available that does, all they can do is manage the symptoms by mopping up the inflammation that causes them.
Obviously for you 2mg was enough - 1mg is not. As well as the PMR aspect, the expert advice is that no reduction during a taper should be more than 10% of the current dose to minimise the effect of steroid withdrawal. Unfortunately that can appear very similar to the disorder for which you are taking the pred in the first place and it is difficult to tell which is which. Steroid withdrawal is your body protesting at the removal of the amount of pred it was used to. It starts as soon as you change the dose and then, if you are lucky, it improves over the following 2-3 weeks as your body gets used to the new dose. It may not though and you continue to feel really unwell. Dropping from 2 to 1 is a change of 50% - it is difficult to do less than 25% of course but there are other ways of reducing but changing the dose on just one day and going back to the usual dose for a few days, continuing like that getting the days with the lower dose closer together until you are on the new lower dose every day.
Whichever it is for you - you need to go back to 2mg, get to a stage where you feel OK again and then start a new slower taper towards 1mg. And you also need to get your GP to order a synacthen test to check your adrenal glands are able to take up the production of cortisol again - because it has been found in a recent study that poor adrenal function is far more common amongst PMR patients than had been thought. It doesn’t mean they won’t recover - but it may be harder than is commonly accepted. The symptoms you describe could fit with that too.
you are all so kind answering me .I have just had a call from the Dr so will be going today. I will speak about a synacthen test . My last bloods in Feb came back ok so I was told. I can’t say I felt ok on 2mg but it was better than now with the pain,loss of appetite and feeling sick. will let you know outcome of Drs visit. I have been on pred since August 2017 so quite a while. Rheumatologist said reduce 1mg a month til zero. no appointment through yet. Unfortunately they can’t feel your pain. thanks again.
Thank you I have been on pred since Aug2017 after a year of waiting I saw rheumatologist who said it wasn’t pmr but osteoarthritis. I think I was on 10mg then. she told me reduce 1mg monthly til zero which would take me to May. Since reducing to 1mg beginning of this month all symptoms returned plus feeling sick all the time. As I replied to Eileen I have Drs app this morning so will let you know outcome.
Understand the PMR may only be in remission and could come back at any time. However, since the adrenal glands produce the hormone cortisol and that production is suppressed while taking prednison. So, isn’t the question: How long does it take for the adrenal glands to begin production of this hormone? And, how to coordinate the intake of prednisone to compensate for any delayed adrenal gland delay in production of cortisol? Isn’t this balancing act essentially the tapering strategy? And based on the collective experience of this site, tapering will very by individual.
I am hovering around the 2/ 1.5 mgs stage and I am finding it is finely balanced for me at this stage. I seem to be ok at 2mgs but uncertain at 1.5. I would not drop 1mg and only drop .5mg . I would find it too much because that’s a big drop when it’s so low. It does sound as though you have passed your optimum dose.
I do wonder how they manage to confuse OA and PMR - they don’t seem at all alike to me. PMR and an inflammatory arthritis maybe - but not OA. It doesn’t affect muscles. Nor is the fatigue the same.
It isn’t really in remission - only in drug-induced remission which isn’t the same thing at all. Take the medication away - and back will come the symptoms. When it is properly in remission then you will be able to reduce the pred dose to zero without a return of PMR symptoms.
There is no answer - as you reduce the pred dose below about 7.5mg the body should start to top it up to the amount required by the body. That varies from person to person, for one thing the bioavailability makes a difference: on e patient absorbs 50% of the oral dose, another 90% or anything inbetween, 10mg oral dose is any thing from 5 to 9mg effective dose. Bodies require a similar total amount to function - so at 10mg one patient gets plenty, another doesn’t. You can’t identify which group you belong to. And this is biology, not engineering - bodies don’t function like a set of machines with the same components and specifications. So my adrenal glands won’t sort themselves out at the same rate as yours or anyone else’s. If i had a crystal ball - maybe, but I don’t and nor does anyone else …
You don’t coordinate the pred dose - your body coordinates the cortisol production as you stop giving it as much pred. In some people the adjustment of the entire HPA axis (hypothalamus, pituitary, adrenals) isn’t entirely smooth at first, it swings about a bit and you feel the effect of too much of one thing and too much of another, there are a lot of hormones and organs involved. There is nothing you can do to alter any of that - even if the internet tries to sell you pills and potions and diets that they say will make it work better.
Thank you very much. Excellent and useful points.
just returned from Drs have been put on 2mg again for 3weeks then a blood test. my last test I found out today showed esr at 38. that was in February. I have an app with blood clinic next week and I will ask for the synacthen test don’t do it at Drs. I hope taking 2mg again will stop the nausea. Will keep reading all the posts. thanks for your help invaluable.
And no-one told you the ESR was raised? I’d be asking why.
no wasn’t told esr was raised they said all blood tests came back ok it was only today a different Dr told me. Like to say since getting home and taking extra mg the sick feeling has eased so very pleased about that. I will certainly ask esr results in future.
Hi Kathleen. I got down to 1mg by doing the DSNS method but I have had to go back up to 2mg. I have been on this dose for a few months now and I do not feel like I can go back down yet