I found this on the Internet, but couldn’t access the article.
When to try alternate-day corticosteroid therapy
Abstract
Treatment with a corticosteroid aims to achieve the remission of disease or satisfactory relief of symptoms with the least unwanted effects. With continuous long-term corticosteroid therapy these include adrenal cortical atrophy due to hypothalamic-pituitary suppression, growth retardation in children, obesity, Cushingoid appearance, bruising, muscle wasting and weakness, osteoporosis, sodium and water retention, diabetes and cataracts. Some of these are inevitable if the daily dose exceeds 10 mg of prednisolone or its equivalent, but the risk can be reduced by giving the drug on alternate days.1a b This regimen is not mentioned in most data sheets for oral corticosteroid preparations.
The article seems to suggest that risks of long term use of steroids are substantially decreased when the prednisone dose is under 10 mg per day, and alternate day tapering allows for a 2 1/2 mg tapering every 6 weeks. Is that accurate /possible? Now I’m in the 6th week of 15mg a day and I have found the best times for the split dose. Im not experiencing any pain now and feel very normal with my daily gym routine. I see the GP on the 5th and will be requesting a ESR and C- Protien test to see where the inflammation levels are at and when she thinks the tapering should start. Thoughts?
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Alternate day tapering is generally not recommended for PMR, especially to start, as we need a steady amount of the medication. Have you looked at the slow taper plans developed by patients? (Link below) These work well for patients who are tapering below 10 mg. It is also not a good idea to taper by more than 10% of the dose at a time. What pred is doing is calming the inflammation which causes our pain. It isn't curing the cause of that inflammation.
It's important to remember that too rapid a taper is likely to cause a flare of the symptoms, and you may well end up taking more pred than if you had tapered in smaller steps and more slowly. "It isn't slow if it works."
Control of symptoms (which, remember, are caused by inflammation which has its own dangers) are the most important thing. Eventually PMR will go into remission, but neither the patient nor the doctor have any idea when.
My initial taper was as follows: 15 mg for 5 weeks, then 1 mg taper every week until I felt symptoms creep in again. This happened at 9 mg. So I went back to 10, stayed there for a couple or three weeks and after that started a slow taper. Started pred in June 2015, had reached 7 by the end of the year, and was at 3 by June 2016. I did taper lower, to about 2, but was not able to go successfully lower than that for several years. Finally had last dose of pred (half a mg) at the beginning of February 2024.
I slowly reduced from 15 mg to 1 mg over several months. Then seeing as I couldn't cut them in half without crumbling, stopped taking them one day a week, then two days a week, til I was down to taking one a week. Didn't get any advice, just thought it seemed logical and it did work. When I told my gp weeks later she joked about me being one of these oddballs who believe watered down meds. works, or something along those lines.
It was logical and it does work, that is what our taper approaches are about.
I fear the joke is on her - even 1/2mg is enough to keep the inflammation due to very low disease activity under wraps but zero is a step too far! The dripping tap will fill the bucket and overflow - whether it is water or inflammation!
My personal opinion is controlling the inflammation adequately and consistently from the beginning is likely to lead to fewer problems down the line!
The whole point about careful tapering such as we advise here is in fact to achieve the lowest best dose as soon as possible without causing flares which inevitably mean dosage increases and higher total pred intake.
Good news for you: it appears that not only do men get autoimmune conditions at a lower rate than women, when it comes to PMR they also usually have a more straightforward journey and recover sooner. You are already back to your previous activity level so you are off to a great start. Just be patient, learn to pace yourself and listen to your body as you taper. 🍀
Thank you for the encouragement I’ve already come to conclusion that this site and the people here are as valuable and probably in many more cases more valuable then a lot of Doctors out there.
..and that’s because we have lived it.. they haven’t. You can read all you like, but that’s never going to be the same as actually experiencing it yourself.
I’m thinking the 10 mg as soon as I can manage it would be less likely to cause other problems down the line
It may, but getting to 10mg as soon as you can is not a simple as that. It all depends on the activity of your PMR. As we say time and time again -mPMR and GCA are not like many diseases, “take the tablets and then taper off asap”. There isn’t a defined end date - they are self limiting diseases, so despite much of the documentation saying ‘lasts 1-2 years’ that is not the case for everyone - for some yes, but certainly not all.
As for alternate day dosing, it may work for some diseases, but not recommended for PMR [and certainly not for GCA] when the diseases are still in full swing. Towards the end of their lifespan it may be useful.
As explained in my intro post the inflammatory substances [cytokines] which cause your pains are produced daily
‘The initial high dose (PMR: 12.5-25mg, GCA: 40-80mg) may give a feeling of euphoria and should relieve at least 70% of pain as it takes control of the built-up inflammation .Some people get an almost immediate reduction in symptoms, for others it may take longer….
However, your body continues to produce proteins (cytokines) every morning, so all the time your immune system is compromised by the GCA/PMR you need to take enough Pred to ensure the inflammation does not build up again. It is a balancing act, you obviously do not want to take too much Pred, but you need to ensure you take to enough to control your symptoms.’
There is no rushing PMR …and many of the long term effects of Pred are not felt by everyone. Plus you also need to remember, poorly treated/untreated inflammation can also cause many issues , so as stated it’s a balancing act.
Thank you , I’m just nervous about the appointment with my GP as I don’t think she has treated many patients with PMR . When she first diagnosed it and prescribed the prednisone, I asked how long would I be taking the prednisone and she said till it’s cured. What I read is what you all have been saying is that it goes into remission and hopefully for years. But cure is not mentioned so I wonder.
That’s what I’m thinking is that she’s that well educated at dealing with this. That article is very informative and sets many parameters and outcomes for treating this disease. I’ll have to adjust my concerns and questions accordingly so as not to question her competence but work with her on sound treatment courses incorporating personal experience with medical protocols. I did note that the overwhelming number of people with PMR are women. I do wonder what the reason for that is?
Autoimmune disease is generally more common in women - I think there is only one where the ratio is reversed. Though to be associated with the hormones ...
The way the abstract is worded suggests they are talking about entirely different conditions as they mention children and stunted growth. I suspect they are not talking about chronic autoimmune inflammation in the elderly (sorry all) where pulsed therapy is not advised.
Since you are already having to split the dose to get effective relief it may not be wise leaving windows where the serum level will drop drastically every other day. This is especially in this early stage. The fact that you feel normal shows the Pred is doing its job and not necessarily that your autoimmune activity is low enough to risk a flare. There is a mountain of anecdotal evidence here that a shows a slow, steady reduction is key. When people wilfully or are forced to reduce rapidly some find it difficult to regain control once they have flared leading to a higher cumulative dose eventually.
A low carb diet is very effective for stopping weight gain and diabetes. Low salt is an easy fix for the salt retention. Cushingoid appearance is very likely but temporary and the others are not inevitable.
Cortisol, like other body hormones e g thyroxine, testo, oestrogen etc exerts its effect on every cell and part of the body. That's why dose adjustments, up or down, can have such a profound, variable and widespread effect on folks symptoms and how they feel generally. Turning the hormone tap on and off on a daily basis is not good; ask any perimenopausal woman! On long term treatment the steadier the daily , weekly or monthly adjustment the less likely one is to have withdrawal or other dose related side effects.
Thank you, I was wondering about the return of Adrenalin push during work out. It seems to be slowly coming back somewhat as I’m feeling a little stronger now.
Pred induced 'adrenal insufficiency' does not suppress adrenalin production per se. The bit of the adrenal Gland( medulla) that produces adrenalin works fine as do all the systems that activate it.
Thank you, a very in-depth article about the Adrenalin and cortisol release in the morning peaks and later in the day the energy starts to wain in my case. All and all, like everyone says, the quality of life is very important in this disease and mine is very close to normal now. I’ll be making a concerted effort not to tip this apple cart over.
That applies to other uses of pred and not for its use in PMR and GCA, It is all very well taking double the dose one day and none the next for other things but in PMR and GCA there are other considerations. The antiinflammatory effect only lasts for 12-36 hours - if you are towards the 12 hour end of that range, you will have a return of symptoms long before the next dose is due so you are likely to have alternating days not only of medication but also of symptoms, one good day, one bad day,
In fact, some experts expressly warn against trying it for GCA as the inflammation may not be adequately managed.
You have to know where to look and what to look for. That article you have found really related to use of pred in children with either adrenal insufficiency or muscular dystrophy, By giving them the ADD form of dosing, adrenal function could be preserved and they would have less stunted growth patterns. Whole different scenario.
Thank you , I was thinking in lines of adrenal withdrawal and the sever fatigue would cause one to become sedentary and invite more problems and disease.
I'll just add here that after 4years and a few months I've now been off Pred for around two months with no problems showing so far, it's still too soon though to assume it's totally burnt itself out. However, during those four plus years I have never had any noticeable side effects from taking Pred, even when on 30mg. My weight has stayed constant and my Hba1C has actually reduced rather than gone up. I have never had to particularly change my diet. There are a lot of warnings with Pred, but it doesn't mean that you will get them all or even some of them, it is a very individual thing. I take it around 02:00 every morning so that it is my system and ready to work before the nasties get released around 04:00-04:30ish and it happily lasted me all day.
Thank you, when I split up my dose, 5mg at 2:30 PM and 10mg at 2:30 AM now the pain is gone for my entire waking hours making me normal again. With this site for support I’m ready to take this on.
But that hasn't happened yet - and as Bcol says, it may never happen. The warnings are about all things that have happened and been reported as possibly due to pred - but they may not have been. No-one gets all the possible things, most have a couple and many have none. Cross bridges when you get to them and I'd suggest stop surfing the internet which ALWAYS offers the worst case scenario. It's fine if you know how to sift the wheat from the chaff - but most people don't. If you get worried - don't look. Ask us because we have the experience to know the difference.
"The half-life of prednisone is two to three hours, which means it'll stay in your system for 11 to 16.5 hours. You shouldn't stop taking prednisone suddenly. You should taper off the drug slowly under the supervision of your healthcare provider. Sudden stops can create an imbalance of natural steroids in your body." From the Cleveland Clinic. I tried alternate day reducing 5mg one day 4 the next. I did this for one month. I was okay, Once I dropped to one month of 4mg, all hades broke loose. Jaw pain, hip pain, shoulder pain. I have PMR/GCA, and have been on 5mg. per day for several years. I also have a rare form of Multiple Myeloma, so a lot going on. But I am back on 5mg. and feeling better. I did fine the first month, but the drop to 4 triggered all types of aches and pains.
Sorry to hear that . At this point in my care I’m just looking at all scenarios and treatments and real experiences to discuss with my GP for a tapering plan. I’m sure this site will play a major role in that. All the best.
My rheumatologist recommended alternate day tapering. At first it didn't work for me, but later down the line I tried it again and it worked. My primary care dr, who has taken care of a lot of PMR patients before they added a specialist to the group, felt that it didn't matter, whichever your body responds to. So I went with his suggestion to try both, and that it wasn't written in stone which method. Everyone's body is different.
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