Morning Pain

[Robinsnest72]

I am new to this forum and am trying to get answers. Diagnosed with PMR last Aug. I am so stiff and in pain in the mornings. However, I do not hurt in bed as did when first got ill. I take 10mg pred around 6:45 and 2 mg at 5pm. Reducing 1mg per month.I will feel better around 11am but am trying to figure out how to feel better sooner. Any suggestions

[Marilyn1959]

Hi Kemper welcome to the forum.

Reduction below 10mgs should be by 0.5mgs at a time. The general rule advocated when tapering is to do so no more than 10% of your current dose. What dose did you start on when diagnosed? Why do you split your dose?

Did you feel better sooner in the day when on 11 mgs? If so I would go back to this dose for a while and when feeling better reduce by 0.5mgs. The pain when tapering may be pred withdrawal for the first few days, but if it is still there on day 6-7 this indicates the cause is inflammation (PMR). Hence my suggestion to go back to the dose you were last comfortable on.

Also are you taking coated pred (gastro resistant) or uncoated. Coated pred takes longer to get into the system.

It is all a bit trial and error to start with, however you will find what works for you as you work through it. Just a word of caution though, whilst you may plan to reduce by whatever each month, listen to your body, for it will tell you when to adjust that plan.

[Soraya_PMR]

Are you taking plain uncoated pred (white) or gastro resistant (red)?

What time do you get up?

I’m guessing you might be on GR pred as it’s taking you around 4 hours to get relief, which is what it takes me. Plain pred usually gets into your system quicker. I can’t really waffle on until you clarify above details!

5 pm strikes me as a weird time! Your idea or docs?

[Soraya_PMR in reply to Soraya_PMR]

Welcome to the forum!

[Robinsnest72 in reply to Soraya_PMR]

I am taking plain pred. I take it at 5pm because that is when we have dinner. I have always had difficulty in the mornings.

[DorsetLady PMRGCAuk volunteer in reply to Robinsnest72]

Did doctor suggest you split your dose to help you in the morning, or was it your idea?

Most people who have problems like that either do a split dose - but take approx 1/3rd of the dose at bedtime to help with the morning pains, and the remaining with breakfast. Taking just 2mg and at 5pm is not going to work.

Or, the other option is to wake up around 2am, take either part or full dose then, ready for when the cytokines which cause the problems are released around 4am.

Sometimes it takes a bit of trial and error to work out what’s best for you.

Although it does say Pred should be taken with food, doesn’t have to be a big meal - you can take it with a spoonful of yogurt or a slice of bread - something just to help during the digestive tract.

[Robinsnest72 in reply to DorsetLady]

No, the evening dose was my idea. At one point I was taking 5mg at night. The doc asked me to change it and the pain came back with a vengeance. I am trying to get down on the pred as I am not convinced this is the answer.

[DorsetLady PMRGCAuk volunteer in reply to Robinsnest72]

Not convinced what is the answer - the Pred, or PMR?

Of course it could be the dose overall is not enough?

[Soraya_PMR in reply to Robinsnest72]

One thing about GP’s, they are ‘Jack of all trades, and masters of none’.

Why did your GP ask you to change your 5mg at night if it was working for YOU?

I have found out the hard way, that listening to GP or Rheumatologist theories cause ME pain and upset, and it doesn’t get my pred dose any lower; quite the reverse in fact! Reducing pred by their methods caused me 2 flares, the result of which was MORE pred. So now I listen to my body, and follow advice from those here who have trod this path before me, not read it from a book, but experienced it and devised cunning little tricks to avoid problems, AND reduce pred sensibly.

Most doctors have an inbuilt ‘fear’ of pred!!! They prescribe it, then panic and want us off ASAP! Unfortunately most UK text books will tell you PMR is of 2 years duration. For a few that is true, but most of us will take longer to return to health (mean average 5.9 years). Now docs are better at dealing with acute problems that require pred, crohns or asthma for example. They need a big hit then a fast reduction to nil in a matter of days/weeks. Those people are not going to have adrenal ‘restart’ problems because of the short duration. The advice to them is to take pred at 8am to mimic the body’s own production. This is pretty irrelevant to us on pred for 3, 4, 5 years, as our adrenal glands are going to give up production of our own cortisol, and they will have to be coaxed back onto the production line at the other end of the journey. So long story short....if taking 5mg at night works for YOUR body, then take 5mg at night. The alternative? More pred at a different time! Doc won’t be happy with that either!

[tangocharlie]

At the Ilkley PMR meeting yesterday Dr Pease said that we are stiffest in the morning because we've been lying down and not moving for hours. He stressed to keep moving as much as possible.

[Soraya_PMR in reply to tangocharlie]

I can vouch for that. If I have a good night I am more likely to be stiff in the morning, than when I have a restless/loo visit/make a cuppa night.

[Robinsnest72]

Wow! Wish we had a PMR Group here. I live in a small town and there is such little info on this. Please keep me posted.

[PMRpro Ambassador in reply to Robinsnest72]

Where do you live?

[Rugger in reply to PMRpro]

I've sent kemper a PM, just in case they live in our area!

Also advised to look at PMRGCAuk website for their nearest group - or consider setting one up, which means you can choose the venue close to home!

[Robinsnest72 in reply to PMRpro]

A small town in ontario

[PMRpro Ambassador in reply to Robinsnest72]

Canada is difficult - but there are several members across the full breadth of northern America! Maybe one person is within reach, who knows.

But the reason the forums exist is for those who can't get to a real live group meeting.

[Mikb in reply to Robinsnest72]

I live outskirts Toronto and I have searched and never found any meetings around.

[PMRCanada in reply to Robinsnest72]

I too am in a small town in Ontario...Southwest region. This forum is very helpful but I still do dream of connecting with others organically. PM me if you wish to connect.

Regarding your dilemma, I had exact same experience, stiffness in mornings.

I currently take 6mg at 2am and 3mg at 2pm. Game changer, worked like a charm. Only a bit of soreness after midnight before 2am dose.

Symptoms are the key to solving one’s own medication and management.

Hope you figure out dosage eventually, and sending you a warm welcome fellow Canuck!

[CT-5012 in reply to PMRCanada]

?skype, son in law used to do conference calls when he was in Australia. Just a thought. All good wishes.

[Soraya_PMR in reply to Robinsnest72]

I don’t have a group close to me either, so the forum is a great substitute. Have a read of some old threads, there’s a mine of information here.

[GOOD_GRIEF]

Until I got down to 10mg, I split my dose - half in the morning (5AM) and half jest before sleep (somewhere between 9-11 PM). I'd have a little stiffness in the mornings, and a bit in the late evenings.

Before I split my dose, I'd take the whole thing in the morning as originally instructed, and somewhere around noon it would literally feel like someone had thrown a switch and I would suddenly feel better. The problem with this was that I am still working full time, and would nearly moan and groan through my commute and mornings in my office.

About a week after I started splitting my dose, I felt better for more of the day every day.

Now that I'm down to 6.5 mg, I take it all at once in the evenings. Very little stiffness or paid at any point during the day unless there's a big storm on its way...

This might not work for everyone, but it sure worked for me. Going to 6mg on April fool's Day...

[Robinsnest72 in reply to GOOD_GRIEF]

What dose did you start on and how long have you been on pred.

[GOOD_GRIEF in reply to Robinsnest72]

Initially I was at 10mg before I saw a rheumy, who raised it first to 15 mg for a month, then to 20mg for another month. Then he sent me back to 15, which caused a major flare that lasted for months even though I was at 20mg. When that finally let go, I took control of my taper and reduced by 0.5mg to 1mg per month depending on how things were going. I'm at 6.5 now, going down to 6 on April 1, with no flares since I started my own taper plan.

I'm just into my 39th month from diagnosis.

[Robinsnest72]

What dose did you start on. I would never be able to work the way I feel

[PMRpro Ambassador]

You could take the 10mg earlier - a study found the optimum time to take ordinary plain pred tablets to minimise morning pain and stiffness was 2am so the pred is at its peak in the blood as the inflammatory substances are shed in the body about 4am or so. The sooner after 4am the pred is able to work, the fewer symptoms will manifest.

There are 2 ways to achieve that. Take the morning dose much earlier or to take a bigger second part of the split dose - more than 2mg at 5pm for example, 2/3 early in the day, 1/3 later is common and usually works well..

If you take the entire dose in one, when does pain start to return? If you then split it, you need to take it about 1-2 hours before you would expect the pain to start to allow the pred time to work. This will then extend the length the antiinflammatory effect.

"I am trying to get down on the pred as I am not convinced this is the answer."

If you have PMR and don't want the pain and stiffness - and you have said you are afraid of it coming back - then pred is the answer. I'm sorry but there is no other: you live with the pain and stiffness caused by the PMR and risk long term damage to your body from the unmanaged inflammation or you take pred and minimise both.

If you need to be able to work then you have to get the inflammation under control - with the correct starting dose and then a sensible management programme. Which generally means working with your doctor and listening to advice from here.

[Robinsnest72 in reply to PMRpro]

According to my bloodwork all the inflammation is gone

[Soraya_PMR in reply to Robinsnest72]

That’s because the pred is working! Stop the pred and it would soon be back.

[GOOD_GRIEF in reply to Robinsnest72]

Yeah, well, that's most likely because of the pred.

[PMRpro Ambassador in reply to Robinsnest72]

That is almost certainly only because you are on enough pred. It is a chronic illness, every morning your body sheds a new batch of inflammatory substances which attack certain tissues and cause inflammation. The pred mops up that inflammation and so relieves the symptoms. If you reduce the pred dose to a level that isn't enough to wipe it all up each day, the bucket of inflammation will fill up as if it were a dripping tap - and eventually overflow. That will carry on as long as the autoimmune disorder underlying the production of the inflammatory substances is active - for 95% of patients it eventually burns out and you don't need pred. But it can be anything from 2 years up for most.

[Robinsnest72 in reply to PMRpro]

This is great info. Thank you. I am going to try splitting the dose. 8mg in morning and 4 mg at night. My rheumy seems to want me just to take it all in the morning. However, he only gives me 5 minutes of his time with no asking questions. All but pushes you out the door.

[PMRpro Ambassador in reply to Robinsnest72]

Time to find a better maybe. Though I know it is difficult - PMRCanada (having a craft moment, is that her name????) has had problems too.

[Estellemac]

It was said yesterday that we all feel better as the day goes on. If we’re on a good maintenance dose of Pred. The main cause is lying in bed. Inflammation builds with inactivity. The more you do the easier it is to move. Might be difficult for the first hour or two after getting up but it does improve

[Noosat]

Of course we are all different. My experience since 110th of December last year when I started on 20mg. I do my own tapering. I started on 4mg yesterday. I had split dose between morning and evening. Now I take morning and early afternoon dosage. At any change in taper, I expect to feel some difference until my body gets used to reduction. When I wake there is some stiffness and I feel little "off kilter" However that can change with movement. I just won't let myself be concerned. I believe the mind is the most powerful tool we have. I do not downplay real pain, but think we can magnify discomfit into "real" pain by overthinking it. When I tend in this direction I say, "come on get on with your life, you will know REAL pain if and when it hits you." Hope your day goes well with you. I plan on arriving at Riverside Nature Center at 10a.m. where I will give tours and be a "nature" information source until 2p.m. Cheers !