How to taper a split dose of pred
Posted , 7 users are following.
8 days ago I was diagnosed with PMR and started taking 15 mg of prednisolone once a day in the morning. My symptoms were reduced during the day and about 80% gone in the evening, but they returned during the night, so in the mornings the improvement was slight. After 4 days there was virtually no improvement in the mornings. I then increased the dosage to 20 mg taken in the morning. Same result.
It seemed to me that the pred isn't able to maintain a sufficient concentration in my body for a full 24 hours. Eileen writes somewhere that it lasts between 12-26 hours, so perhaps I am one of those with a high metabolism of pred. In any case I tried to take 15 mg in the morning and 5 mg at 2 am. What a difference! My symptoms are now down by about 90% throughout the day and night.
I had my ESR, CRP and Fibrinogen measured yesterday and they are all way down, just slightly elevated. My GP tells me to continue with the 15 + 5 mg schedule for a week and then start tapering. The question I have is, what is the best tapering schedule for a split dose like this? I would prefer to continue splitting, as this seems to work so much better.
1 like, 16 replies
Joydeck carldk
Posted
My initial prednisolone experience was similar. I am fit and exercise heavily, with a whole food diet.
I was diagnosed with PMR late in October. I tried lower doses of prednisolone, morning only, but soon ended up on 24 mg, split 17/7, taken at 8 am and pm. Splitting the dose gave me 24 hours relief instead of just 9 hours, beginning in the late afternoon.
I'm now on a 10/7 split, having briefly reversed the taper by 1 mg on three occasions. If my dose is a little too low, PMR inflammation begins to show itself, after a few days, as bilateral pain in the outer shoulders.
Interestingly, I have found that any attempt to reduce the 7 mg evening dose still leads to PMR pain from 3 am to 6 pm. So, beware of reducing the evening dose.
For the last 8 weeks, I have been free of PMR symptoms almost all the time. (I now wonder whether an initial split of, say, 10/8 would have worked just as well.)
nick67069 Joydeck
Posted
nick67069 carldk
Posted
Usually people stay for 6 weeks at the starting dose, so I would not rush into trying to reduce. As far as what to taper if you have a split dose, it is really trial and error to find what works for you... In my case, I had a split dose that was 2/3 in the late evening (actually 1-2AM) and 1/3 in the morning. The logic behind higher evening dose was that it takes 2-3 hours for pred to reach max concentration in the blood stream and that coincides with early morning cytokines release ( ~4:30AM), which is the main cause of inflammation.
You have the opposite, favoring morning over evening. When you start reducing, if you want to continue with split dose, it would make sense to reduce morning dose first. The rule for reduction is that taper should be less or equal to 10% of the dose. Use the DSNS - gradual reduction method, as many of us do.
I kept split dose until I was down to ~5mg total, and then switched to just evening dose. You have to find combination that works for you. Don't be afraid to experiment, as long as you keep total intake steady, you can play with split amounts as you wish.
Joydeck nick67069
Posted
If you eventually switched to just an evening dose of 5 mg, did you eventually taper to zero prednisolone by evening dose alone? Was this taper uneventful?
If so, this seems to refute the well-established wisdom that low doses of prednisolone should be taken in the morning to encourage the resumption of normal adrenal function. Fascinating. I've read nothing like it anywhere. Even your split of 1/3 morning and 2/3 evening is most unusual.
Have others tapered to zero with just evening doses of pred?
EileenH Joydeck
Posted
I think the whole "taking pred at night suppresses the adrenal function" is over-egged! It is significant for patients on steroids for a very short time, weeks and not even months. But we are on pred at above 10mg for so long there is going to be adrenal suppression. Very few people have problems above about a 5mg dose of pred and once you are below 5mg the adrenal gland function will start to return slowly anyway.
Joydeck EileenH
Posted
I presume one could continue with a split-dose down to zero pred.
EileenH Joydeck
Posted
Don't see why not if it works - although my suspicion is that taking your dose at night to avoid the morning problems by preventing them ever starting might be better but everyone is different.
EileenH carldk
Edited
The pred doesn't stay in your body - most of it is excreted within 12 hours and it is the antiinflammatory effect that remains and which varies. The new inflammation is caused in the morning, about 4.30am by the shedding of a new batch of inflammatory substances so logic says not to reduce the evening part of the dose.
Personally, I would rather my markers were as low as they are going to get before starting to reduce - and then you can use them to see how effective a new dose is. And, even small, rise will suggest the lst dse was barely enough.
carldk EileenH
Posted
Thank you everyone for your comments and suggestions. I have another question. I know it is too late for me now, but I am curious and it might help future patients. Has there been any study to determine whether early treatment can reduce the total amount of pred needed and/or reduce the time it takes to get rid of the disease?
By now I have read many articles and studies about PMR including the 2015 Recommendations, but I haven't found any recommendations or incentive to start treatment as quickly as possible. In my own case I went to the doctor after 2 weeks of classical PMR symptoms. My ESR was 37 which he didn't find alarming, so I was advised to take NSAIDs and paracetamol (acetaminophen) to alleviate the pain. That didn't work, of course, so I spent another two agonizing weeks before I went to the GP again. In the meantime I had also developed right arm claudication and carpal tunnel syndrome. ESR was now 53, CRP 39 and Fibrinogen 19, so the GP now found it was time to start on prednisolone. As described earlier, 15 mg was not enough.
I am wondering, if 15 mg would have been enough and if I could have avoided the additional problem of the carpal tunnel syndrome if treatment had started at my first visit to the doctor. I have met another person here in Denmark where I live who had PMR symptoms with low blood markers at his initial visit to the GP. Nevertheless, he was immediately put on 10 mg of pred, which was enough to get rid of all symptoms and after 2 years he tapered to zero and has been free of symptoms for a couple of years now.
So, I am thinking that early treatment might potentially be of significant benefit to the patient.
EileenH carldk
Edited
Many men very often get a whole different experience, both of PMR and pred.
It is difficult to say really - it is slowly being acknowledged that probably there are different sorts of PMR that sort of parallel the 25% off pred in 2 years, the 50% taking 4 to 6 years and the rest of us, including the 5% who are on pred for life. Christian Dejaco is lead author on a VERY good paper (to me) about the spectrum of PMR, LVV and GCA:
The spectrum of giant cell arteritis and polymyalgia rheumatica: revisiting the concept of the disease by Christian Dejaco Christina Duftner Frank Buttgereit Eric L. Matteson Bhaskar Dasgupta
Google it and have a look - all available free to air!!!
Carpal tunnel is not uncommon in PMR - but arm claudication isn't seen THAT often. When it is, it suggests that possibly this is more in the PMR/LVV/GCA overlap circle at the centre of the left hand image in Fig 1. I had bilateral arm and upper leg claudication - and briefly jaw claudication and scalp pain that went away on its own. That, they now acknowledge, does happen. I mentioned it to an eye specialist in GCA at Newcastle 9 years ago - she had never heard of it. I wasn't diagnosed originally because they didn't ask the right questions and I didn't know what I know now! I never had headache or visual symptoms, just the claudication which no-one ever showed any interest in.
In the end I was started on 15mg after 5 years of symptoms - which had a dramatic effect compared with how i had felt. Some things took months to fade - but no-one ever associated them with GCA. Heading for 9 years later and I'm still on pred. Some of my problems are myofascial pain syndrome (MPS) - also a component of refractory PMR I believe - but at least I now live in Germanic mainland Europe where complementary therapies are regarded as "good things". Without therapeutic massage I would need a lot more pred! But I have done much better after a few infusions of high dose pred nearly 6 years ago for severe back problems due to the MPS and was able to get down to 5mg for some time.
So would early treatment shorten the course? I don't know - but I suspect that starting with a couple of high dose infusions might make a significant difference for some of us who don't actually have "just" PMR but are in that elusive bit in the middle which isn't identified because they don't/can't do PET imaging which would show it up. Which brings me to another paper from one of my favourite rheumies as lead author together with a lot of friends:
EULAR recommendations for the use of imaging in large vessel vasculitis in clinical practice
by Christian Dejaco
Free to air in the BMJ
carldk EileenH
Posted
Thank you Eileen. I have read the Dejaco article which I found very interesting. I did have a small suspicion of GCA myself, but I didn't know of the LV-GCA type. I might be interpreting my arm problems wrong, however. Before treatment I had a feeling of pain, numbness and heaviness in the arm especially at night and in the morning, together with tingling in my fingers. I interpreted the arm symptoms as being claudication, but I now read that carpal tunnel syndrome can cause numbness and tingling all the way up to your shoulders. So, perhaps it is just carpal tunnel syndrome. After 10 days of pred treatment i still feel some slight tingling in my fingers in the morning and occasionally during the day, but the pain and numbness in the arm has largely gone. My GP dismissed the arm problems as being a part of PMR that would go away with the pred treatment.
Interestingly, Dejaco et al are saying that "16–21% of patients with PMR may develop GCA, particularly if left untreated[2]". This would certainly provide an incentive to start treatment of PMR rather quickly, I would think. The reference is another paper by Dejaco et al (full text available for free on Medscape), but I didn't find any supporting evidence in it.
I have seen somebody saying in a discussion forum (I have lost the reference) that the risk of getting GCA with treated PMR is 30% and with untreated PMR 70%. A very dramatic difference, but the statement was not supported by any scientific data or reference.
Anhaga carldk
Edited
Carldk, I think anecdotally you'll find people, such as myself, and possibly Eileen, who felt that although they didn't develop classic GCA symptoms, and never had vision threatened, nevertheless they had some symptoms very much part of the GCA spectrum. Eileen was not diagnosed for five years, and I was over a year, with worsening PMR symptoms throughout that year. The symptoms which I later learned were part of the GCA aspect at the time I merely dismissed. My sore scalp, for example, I thought was due to shampoo, which I coincidentally changed just at the time I was put on pred. But when this symptom reappeared during a recent flare I reconsidered that assumption.
EileenH carldk
Posted
Polymyalgia Rheumatica Relapse and “Silence” Large Vessel Vasculitis. Is There Any Association?
Stavros Chrysidis1, Philip Rask Lage-Hansen1 and Andreas P. Diamantopoulos2, 1Department of Rheumatology, Hospital of Southwest Denmark, Esbjerg, Denmark, 2Rheumatology, Hospital of Southern Norway Trust, Kristiansand, Norway
nick67069 carldk
Posted
Well, I had 2 year PMR anniversary in December and am currently at 4mg to 3.5mg taper. I think study you reference is based on short term pred therapy. If you take pred long term, you adrenals are at sleep and need to be awaken when the pred dose goes below 7-8mg. After reading it, I was not sure if it applies to long term treatment, such as PMR.
I did not have any flairs(knock on wood) and plan to reduce slowly. This is my second attempt to go to 3.5mg... first time was last October. I completed 5 week taper and then felt PMR symptoms coming back... so I went to 5 for a few days(flush) and then back to 4mg. About that time I had 3 month scheduled rheumatologists appointment and the blood work showed increased inflammation. He suggested to wait 3 months before attempting any reduction. If you listen to you body, and react swiftly, thus far I prevented flair ups. Same thing happened at 5mg-->4.5...First attempt failed. After a few months I tried again and had no issue. I just started 3rd year and the AVERAGE is 5-6, so no rush.
Joydeck nick67069
Posted
My instinct is to split-dose all the way to zero pred.
I have just ordered from eBay, for $11.69, scales that weigh to the nearest 1 mg. Since 5 mg pred. tablets weigh a little over 50 mg each, I will soon be able weigh pred fragments to almost 0.1 mg precision: precise enough to maintain split-dosing down to zero pred.
nick67069 Joydeck
Posted
I still believe that evening dose is more effective especially if you time it correctly to coincide with release of cytokines at 4:30AM. It basically takes care of inflammatory substance before it can cause any inflammation. With morning dose, cytokines have several hours head start before pred becomes active.