PMR, Prednisone

This is very interesting.  I had assumed that the pred worked on a 24 hour dosage, and was to be taken at breakfast time to avoid sleep disturbances.  This sounds like it is more important to match the timing of the dosage to the body's normal circadian rhythm and by doing so maybe even make it easier to maintain the lowest dose?

A study showed that if you took 5mg at night there was greater suppression of the normal production of cortisol than if you took 15mg at 8am. So ti was said that pred should be taken at breakfast time. Most people are taking pred short-term to deal with an acute inflammation so the least adrenal suppression the better.  All well and good - but in our case we are looking for the optimal management of our symptoms and this is for a chronic disorder - it is years not weeks we are looking at. Even at the lower doses being used there will be adrenal suppression when you take it for months and months. So it makes sense to use it in the best way for you and, into the bargain, every person is slightly different.

It sort of works on a 24 hour dosage - the antiinflammatory effect lasts for 12-36 hours. For me it can be a good 36 hours plus. For someone else it may be barely 12 hours. I can take a double dose on alternate days and it works OK. But I know people who are struggling by evening - and for them approx 2/3 of the dose in the morning and the rest in the evening works far better. Or others have unpleasant side effects which disappear when they take their dose with their supper. They get to sleep OK and get a decent night's sleep - and then have a good day. If you are good first thing in the morning you are able to get going and once you get going - it all gets better. So a bit of experimentation and lateral thinking can achieve a lot!

PS - the hope with the Lodotra I take is that by pouncing on the cytokines immediately it might be possible to get away with a lower dose. I had never got under 9mg before - whether it is the Lodotra or the "Dead slow and nearly stop" approach I have got down to 4mg comfortably. I nearly managed 3mg. 

There are supposed to be clinical trials - yeah, right, maybe but which millenium remains to be seen. Anecdotally though I think it is great.

Hello Eileen! Thank you so much for all your valuable information. Can you please tell me, how do I know if I need to increase my prednisone dose. My doctors are not telling me. They just tell me they want me off of it. But I cannot exist without it right now. So I've been on about 12.5 mg split throughout the day. But my inflammation is terrible. I'm always in pain after about eight hours if I don't take more. My lab slip yesterday, my ESR is normal but my CRP is 17.8. I'm wondering if I need to go higher to get my inflammation down or not? if I don't, how do I get out of the inflammation and get out of this Flare? Please please anything you could expand on would be wonderful.

Fixmecc, what do you mean, 12.5 split thoughout the day?  How did your doctor tell you to manage the dose?  Most of us take one dose, usually in the morning, some in the evening, others in the middle of the night, or using a timed release type.  If the dose is split it will be twice a day, usually one dose in the morning, one in the evening.  How do you split your dose?  I'm sure Eileen will be along tomorrow with some good information!

If I don't take at least 5 mg at night I cannot sleep because I'm in so much pain. So I usually take five at night, five in the morning, and 2 1/2 about 2 PM. My doctor did not tell me that I had to take it all in the morning. If I don't take them at night I cannot sleep and I cannot get out of bed in the morning I am in so much pain. This is my very first flare, a full body flare that is been going on for nine weeks now. Complete full body pain and agony level 10. all of my markers or negative except CRP which is 17.5 . I have not been diagnosed officially yet.

It sounds to me as if your doctor isn't very knowledgeable about PMR and its management - is it a GP or a rheumatology specialist?

Either they made a diagnosis of PMR or they didn't - and think it may be something else which has presented in a similar way to PMR. That isn't unusual and is very confusing for both the patient and the doctor.

You should have been started on at least 15mg - and if that didn't manage the pain and stiffness to give about a 70% improvement then a higher dose, up to 25mg per day should have been tried - and if that didn't work, they are right to think outside the PMR box. But 12.5mg is neither one thing nor the other and for many patients won't be enough to clear up the inflammation to start with. You probably need to be on 20mg, 15mg might be enough but 12.5mg certainly isn't.

The idea of using one single dose in the early morning to to hit the new lot of inflammation hard, the antiinflammatory effect of pred lasts for 12-26 hours so for the 12 hour people it won't last all day. Then you can consider spiltting the dose.

If your flare has been going on for 9 weeks your doctor is being an idiot (sorry, but I can't think of a kind way to say it) because if it is your GP then he hasn't a clue what he's doing and it is high time he learned - or sent you to a rheumaotlogist.

"All my markers" - there are only 2 that are of interest in PMR: ESR and CRP and that CRP is elevated enough to cause concern about something and your doctor is doing nothing about it. If you mean rheumatoid factor is negative - that doesn't mean it is not RAm, you can have seronegative arthritis.

Why do they want you to come off pred? Because they are scared of it or because they want to investigate the cause of your pain differently? They have to make that clear. Give us some more information about that - and we'll make appropriate suggestions.

I'm a bit confused about starting at the right dosis still, Eileen. When I sent in my request for that survey on hearing problems, I received some advice in an email they sent me. It was a warning to not yo-yo on the prednisone in the beginning so as to optimize chances of a smooth ride through the treatment. I've been on 15mg for 5 days now and still not sure if I am at 70%. I can say that the malaise (headache, chills, night sweats) have subsided and the total-body pain upon awaking has also got much better. What makes me doubt that I am at 70% is that if I walk a couple of city blocks I look and feel like I have severe leg muscle atrophy. I'm just worried that I'm not getting a high enough dosis.

I have finally got my husband to trust me with the prednisone (you'd think I was asking him for morphine) so that I can split the dosis the way you described - taking 1/3 at night. I don't crash anymore. I now have prednisone in all sorts of strengths that husband has brought as a piece offering but of course I'm not going to up the dosis without a doctor's approval 😈

This is a temporary schoolroom as i am looking for a doctor with a flexible mind that likes to have his perceptions changed with a smallish ego to. . me through my journey

I think what that probably meant was not to start on 15mg, assume all is well after a week and then drop to 10mg (which is almost certainly not enough) and shoot back up to 15mg (or in the case of GCA, start at 40, drop to 30, discover that isn't enough, go back to 40) rinse and repeat.

You need to stick with the starting dose for at least 6 weeks - or longer if the symptoms take longer to settle. The 70% is GLOBAL - there may be bits (usually bursitis) that don't settle immediately by anything like 70% but other things (stiffness for example, and the other things you mention) can be far better more quickly.

Madrid has hills doesn't it - are you walking on the flat at your own pace or trying to go at your normal rate up a hill? The pred doesn't cure the autoimmune disorder - it is still chugging away in the background and your muscles are still intolerant of acute exercise. If you try to do too much too soon - you'll notice. The pred is reducing the inflammation - if you had had flu, would you have expected to be back to normal after a few days? Some people never get rid of all symptoms just with pred - they always have a bit of residual something - some have a lot of residual something. If nothing else - everyone is different!

Maybe discuss 15mg mornings, 5mg later with the man - but if you are patient I think you will probably be fine as you are. Rest at least as much as you walk for a week or two and see how it does and don't do hills! Or walk a block (what's a block?) and have a rest, then walk another - you must have plenty of cafes in Madrid!  If you don't learn anything else with PMR you learn patience! It's good to hear that you aren't crashing now you are using a split dose - and your husband must be able to see the difference in you, can't he?

Wow, Eileen, I don't know what Id have done without your help. I have been so confused and frustrated about having these debilitating symptoms since the latter part of April, getting more and more frustrated trying to get a diagnosis with the help of my husband who was in denial about me having a condition that called for treatment with steroids and kept convincing me to see a psychiatrist for depression. A year before I started getting these symptoms, I had been grieving for a mother's worst nightmare: my daughter moved to a rural village in Colombia with a man 15 years her senior whom she barely knew and had become estranged from me and then one by one with the rest of her family. I was extremely affected as would anyone be, and although the degree of stress that the situation caused could very well have triggered PMR, I knew that the symptoms were not due to depression.

Madrid is not too hilly, it sits on a meseta, I believe. But I get your point, I can't expect to, nor should I do the level of activity that I did pre PMR. I wonder though, why I felt so energetic - as if nothing was wrong with me for a few hours after the first dose of prednisone 10mg.i also felt the same way after the initial round of an inyectable cortisone that the Rheumatologist initially ordered. Is that typical or a sign that the dose is insufficient?

I do OK with patience and I'm certainly planning on learning lots of new skills through this journey.

Thank you for your help, reading all the posts on here have made such a difference. I'm probably making you repeat yourself, asking the same questions more than once. I'm sorry for this but as things are coming into prespective, my questions seem new to me.

I'm quite familiar with British terminology but I don't know the British equivalent of " a city block". In Castillan it's "manzana" which imeans apple, too.. 😬

Typical of pred: it can cause some people to have a real high, even to the degree of mania, and it also makes some feel like the Duracell Bunny even at the lower doses we are on! So my GP keeps saying - and I keep telling her: if only!

I do this on 3 different forums - I write the same essay a dozen times a week sometimes! But there is no other way to do it so that it fits into the person's educational/experiential level. It's fine - I'm retired and it keeps me thinking and reading!

There isn't an equivalent of "a block" in Britain - the towns are higgledy piggledy and it might be 20 metres or 100 metres between roads and they aren't "square"!

It was fun while it lasted😁. I'm beginning to think the dose I'm on is too low and trying to talk husband to follow your suggestion of 15mg in am and 5mg pm. Is it normal to have these ups and downs so early into the treatment with prednisone? Today I woke up with lots of pain, my arms, shoulders, hips and torso muscles fatigue with minimal use, the classical symptoms of PMR seem to have increased.

From all that I've been reading on here, it seems that doctors everywhere aren't aware of the international protocol for treatment of PMR.nor are they interested.. You don't have to be a Dr. House to understand and follow the guidelines. I'm still shocked at how the Rheumatologist that saw me proceeded.

One thing I really hate is feeling superior to anyone, especially doctors who frown openly on patients' desire to be as informed as possible. This man, after the three injections, when I told him I had felt 100% for a few hours and then nothing, he must harness me a prescription for Prednisone and told me to take 10mgs for one week and then to go down to 5mgs and go back to see him in a month.. No explanation, no warnings to watch for GCA signs, no advice on protecting my bones... Nothing! With docs like these, one would be much better off to manage their PMR digitally.. All we need is you and someone to write out prescriptions..

I just re-read this post, it has answered many questions I had.. Thank you, I'm almost caught up on all the threads and I realize that I should have read everything before posting questions and thank you too, for being so understanding..

Yes - because I bet yesterday you did far more because you felt well!

What disgusts me (and before anyone bites my head off,  I don't think it is too harsh a word to use) about that rheumatologist is that he did something that was utterly pointless. He'd already done somehting that isn't in any textbook and then he again set you up for failure by a fairly useless dose level for 2 weeks - to allow you a bit of respite and then allow the symptoms back. It is known fairly widely that if you get into a yoyo pattern with dose it gets increasingly difficult to control the symptoms and to reduce. He must have been aware of that.

To be honest mimi, I don't think a lot of doctors know enough to be able to explain to a patient what's being done in a way the patient will understand. They have to be aware of the real effect of PMR on a patient - and most of them don't. They think it is just a bit of stiffness that goes away with a bit of pred. It isn't and here is a paper that expresses it:  Google "pdf I suddenly felt I'd aged Helen Twohig White Rose Research" and you will get a link for her paper. Let your man read it!

Then they have to understand how to use the pred - and they rarely do. I know a few superb rheumatologists who do get it - they fully get the potential disability and they reaslise that while pred is a potentially powerful and unpleasant drug, it offers life to the patients with PMR. They also see that we would like to have good quality of life now - and will accept the downsides of pred because, after all, who knows how long we will live anyway? What's the point of me living to 95 when at 65 I can't move and look after myself? Thirty years as I was at 52 doesn't appeal - and I'd already have completed 12 of them by now!

However - you're learning. Perhaps by the time you have finished your husband will also know enough to set up a private practice in retirement just looking after PMR patients 

Always give me such a boost to read you..

Haha - I didn't fell like the duracell bunny, but my husband said I behaved like it.  I was just so glad to be able to move again, plus terrified of OP so started walking everywhere as well as mowing the lawn (which latter activity I have completely resigned from). 

"which latter activity I have completely resigned from"

Now THAT I really am pleased to hear!!!!

I got PMR about 3 or 4 years ago and had a CRP of 100. 20 mg of pred stopped the pain quickly and I tapered down over time to 1 mg/day but I kept taking it at 1 mg until the present as I felt slight pain in my shoulders on many days and my CRP never went below 9. I have just started getting pain in my left shoulder and neck on my left side a few weeks ago so I had a CRP test that showed 9.7. Is this an indicationof a recurrance? I was thinking of going up to 5 or 10 mg a day for a few days to see if the pain went away. If it did would I have to taper all the way back down again?

I'd have thought it made more sense to have the CRP checked again to see if it is still rising - some people have higher levels than others just as a matter of course - it is trends that are important rather than isolated small changes. And the other thinkg to ask is - have you done anything to stress shoulder and neck muscles? I have discomfort that will get as far as pain that isn't the PMR. it is due to something called myofascial pain syndrome, often found alongside PMR and caused by the same inflammatory substances except they are in concentrated small areas forming trigger points on either side of the spine, in the shoulder muscles, about rib level and in the lower back. My neck and shoulder pain has almost always had a component due to that, the PMR just added stiffness and all over pain. The problem with just increasing your daily pred dose is that it will often also respond to that and the real cause isn't dealt with. Dealing with THAT often allows a much lower oral dose - you might even get down to zero if that is the case.

I kinda did have it checked again. It was 9.0 in July and when the pain started in October I had it checked and it was 9.7. The doctor did not consider this a significant increase. Your idea about myofascial sounds interesting as the pain is in one shoulder and neck side only  and PMR should be more general. I'll try some stretching and excercise and analgesics but in the meantime i tried 3 mg yesterday and it reduced the pain until at least 2:00 am so i'm thinking of 2 mg in morning and 1 mg before bed to see how that works.

It maybe isn't a significant increase - but another in November might be a good idea.

Otherwise - sounds like a plan!

unfortunately I'll be in thailand until march and away from my lab. i'll take a bunch of 5 mg pills which i can cut in half and another bunch of 1 mg pills and work at keeping most of the pain at bay with minimum dosages meanwhile taking my calcium/ vitamin D supplement. with any luck i'll be able to work my way back to 1 mg/day. the doctor has promised to have me do a bone density scan in the sprin.