Pain or no Pain?: Hi, I joined this group recently... - PMRGCAuk

PMRGCAuk
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Pain or no Pain?

Aussiebird87
Aussiebird87

Hi, I joined this group recently, but don't think I have written on here. I hope people can help me with this question. I do hope I am making sense. When you wake up in the mornings, do you still get pains in shoulders, hips & thighs until you take your morning Preds? I have been on Preds for 2 years, started on 15mg & only managed to get down to 7mg, slow tapering, split it twice a day, otherwise would feel pain in the evening as well. So are we supposed to be pain free in the mornings? I am trying to figure out what Preds are suppose to be doing if I am still waking up in pain, after they wear off. I thought with PMR you go into remission usually around 2 yrs as I have been told. Seeing my Rheumotologist next week & will ask him this question, but would like to know of other people's experience, so I don't look too stupid asking him. Thank you

26 Replies
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PMRpro
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First the bad news: "I thought with PMR you go into remission usually around 2 yrs as I have been told." - afraid not, PMR has a median duration of 5.9 years and less than 1 in 5 patients are off pred in 2 years. I have no idea what makes them think that - but at last a PMR expert at the Mayo Clinic has done the work to confirm what we patients knew!

practicalpainmanagement.com...

But it is relatively new work - a lot of doctors haven't seen it and still have the 2 year myth in their minds. But you have the link!

Every morning at about 4.30am the body sheds cytokines into the system. They are important substances but in PMR some of them start to cause more inflammation than they should. The result is the pain and stiffnes we know as PMR. The pred relieves that inflammation to reduce the symptoms.

The antiinflammatory effect of pred lasts from 12 to 36 hours depending on the patient - if you are a 24 to 36 hour person then you will be able to take a single dose and still be pain-free 24 hours later. Others are not so lucky and at some point they will feel the pain and stiffness returning. Splitting the dose often solves the problem of the returning pain as you have found. It may be you need to alter the split - you need to take the second dose about an hour and a bit before the pain would return and maybe a bit more in the evening and less in the morning would work better - experiment a bit if you haven't already done so.

The optimum time to take pred to avoid morning stiffness was found in a study to be 2am - the pred level is at its peak by 4am, the inflammatory substances aren't able to get a hold to cause trouble. Another option is to wake early, take the pred and settle down for another couple of hours until it starts to work. The earlier you take the dose - the less inflammation is established and the less it has to do.

Aussiebird87
Aussiebird87
in reply to PMRpro

Now that made me want to cry, but it sounds more realistic, couldn't see how the 2 year mark made sense if I am already there, and still on 7mg. Okay will not worry too much about it anymore, as it seems it is something that will be going on longer. Will have to look into changing the times of when I take the Preds. I take amitriptyline at night which knocks me out, so getting up at 2am might prove difficult, but will work it out. I will try to experiment, thank you so much for the reply, it has helped me so much to understand PMR better. Rose

PMRpro
PMRproAmbassador
in reply to Aussiebird87

You don't have to get up at 2am - just mess about with the times, you'll find something that works for you.

Sorry - it does annoy me that doctors tell patients "2 years" when it is soooooo unlikely to happen. And then when they are way beyond 2 years it is us in the charities who have to break the news. And even worse, there are doctors who announce it can't be PMR because it has lasted longer and take the patient off pred.

Like me you will learn to manage it even better - and live a decent life. I'd like to not have to take pred - but hey-ho, things could be far worse :-)

Aussiebird87
Aussiebird87
in reply to PMRpro

I go to bed at 1am, I take amitriptyline at about 9pm and then takes me a while to get to sleep. So maybe I might try taking Preds before I go to bed to see how it goes. My Rheumatologist did say two months ago that he thinks I may have fibromyalgia as well, so will see what he has to say next week when I see him. Should be interesting. Thank you for the link you added, I will read it. Thanks again for your reply.

I take my evening dose at 11 cuz I try to sleep around then but often don’t make it to bed till 1. There’s no “stupid” question. I bug my doctors all the time. And my Rhummy is always mentioning fibromyalgia. 😬

“A riddle wrapped in a mystery inside an enigma.” Winston Churchill said that, but he was talking about something else. I think it sums up Rhumatology.

It is all too confusing to me, but I can see why the Rheumatologist is thinking it is something else as well. When I saw him two months ago, my husband decided to tell the Rheumologist that I have become very sensitive, that is how the discussion started. All happened when I got to 7mg. My body has become sensitive, my hearing, taste, smell, no one can touch me as my skin hurts, I have tingling all over the body, nerve pain. The Rheumotologist tested my elbow and knee pressure points, it made me scream out, I told him to stop and not touch me anymore. So guess he either thought I was mad, or something was wrong. So he suggested it sounded like Fibro. He put me on Amitrypline for past 2 months and wants to see me next week to discuss it. So not sure what the outcome will be, but it should be interesting! I am just wondering if it is tapering on Preds affecting me, rather than fibro. Who knows, love the quote sums it up.

PMRpro
PMRproAmbassador
in reply to Aussiebird87

They really seem to have a fixation on fibromyalgia! If it goes with pred it isn't fibro!

And if he is working on "trigger points" then the trigger points in fibro overlap with the trigger points for myofascial pain syndrome which is often found alongside PMR, is caused by the same inflammatory substances as PMR but they form hard knots of inflamed muscle fibres.

Aussiebird87
Aussiebird87
in reply to PMRpro

I have noticed that, so many people being diagnosed with Fibromyalgia. I am just wondering why I didn't have it before, until I tapered to 7mg, when all the sensitivity started. The Rheumatologist based it on my symptoms, touched 4 pressure points but I stopped him, as it was too painful. So we will see this week what he thinks now I have been on amitrypline for 2 months, whether he still thinks it is Fibro or tapering on preds causing it.

PMRpro
PMRproAmbassador
in reply to Aussiebird87

A lot of doctor plump for fibro when they don't know - and it lets them off the hook as there is no good treatment for it! IMHO, it is a greatly overused and abused diagnosis. Even the doctor who first described it has said he wishes he hadn't!

A diagnosis of fibro needs 11 out of the 18 points to be sensitive. Before I was put on pred and I was looking for what it could be I too thought it might be fibro - but I couldn't summon up more than 7 or 8 trigger points. But in addition, when I had a massage or even a Bowen treatment and the therapist took hold of my foot/ankle it was super tender (can't think of a better word but it doesn't express what I mean either). My shins were tender, at times my skin hurt to touch - like it does when you have flu or have burnt yourself. All of that faded eventually when I was put on pred - and occasionally appears now if I'm having a bit of a flare.

There are a lot of therapists who offer myofascial release treatments - they work on the trigger points but I'm not sure what they do when the fascia of the muscle is inflamed which is what I think causes this overall tenderness. When my physio here is working on me, the trigger points really do hurt and may be sore the next day - but the longer term result makes it worth it.

Has the amitryptiline helped at all?

Aussiebird87
Aussiebird87
in reply to PMRpro

Interesting reading your experiences, always helps to see the other side. I was having Bowen for 4 years because of the Osteoarthritis in my lumbar and cervical, It was great until I developed pain in the groin, caused by my lumbar discs moving about. My Orthapedic surgeon did all his tests, even had a Nuclear Bone Scan (showing up inflammation in my body, as well as spinal issues). Surgeon referred me to a Neurologist who did his bit, also a lumbar puncture, checking for MS. To avoid back surgery for now, I went to a Myofascial release therapist, he is also an Acupuncturist and Physiotherapist. He did the muscle massage, and dry needling in my lower back. After 4 sessions my body started to flare up, I was in a lot of pain. My Dr referred me to a Rheumatologist, who suspected PMR. I went back to my Bowen therapist months later, but it was too painful, she couldn't touch me so we stopped treatment. I have IBS and bladder problems and pain too, so according to my Rheumatologist, can be a sign of Fibro. It seems everything is a sign of Fibro, no wonder people are getting depressed. I must admit I do find that my symptoms are less problematic since I started Amitriptyline, I sleep better, IBS and Bladder less painful, I find it helps with the nerve related pain the most.

Daisychain12
Daisychain12
in reply to PMRpro

This is freaking me out. I was doing exactly that by instinct, staying up til two and taking the pred. It worked well. My GP and rheumy said NO DON'T DO IT. They say it is too disruptive to my melatonin etc. Now I take it at 4 but not so successful. xxxx

PMRpro
PMRproAmbassador
in reply to Daisychain12

That's a new one on me - melatonin! I take a form of pred that releases at 2am - makes not the slightest difference to my sleeping. If it works for you - do it. But don't mention what time you take it and they won't know.

Aussiebird87
Aussiebird87
in reply to PMRpro

Are there different forms of Preds? What is this one that releases at 2am?

PMRpro
PMRproAmbassador
in reply to Aussiebird87

It is called Lodotra in Europe and Rayos in the USA. It is ordinary prednisone but encased in a special patented coating which breaks down after 4 hours in the right conditions in the stomach and releases the entire dose at once.

It isn't available in all countries in Europe, Austria and the UK don't cover it for example. In the USA it is very expensive and not all insurers will cover it. I have no idea if it has reached you - I suspect not.

Aussiebird87
Aussiebird87
in reply to PMRpro

I live in England, and all I know is the Prednisolone I take. Maybe oneday it will arrive here, but if it is expensive I wouldn't hold my breathe.

PMRpro
PMRproAmbassador
in reply to Aussiebird87

It was there - approved for use in RA which is what it was originally developed for to help with morning stiffness. I think it was last year there was an edict that it should be restricted because of the price and someone said recently it has been stopped altogether. It has been available privately in the UK - but whether it still is I don't know. If the NHS isn't using it I would be surprised if it is stocked even by the distributors.

Prof Mackie in Leeds and I suspect you could do the same with enteric coated pred - which is available in the UK (and nowhere else). It takes more than 4 hours, sometimes as much as 7 hours, to be broken down in the gut and absorbed so if you took it before bed - it would be working by the morning for most people and you could adjust the time so it works for you.

Oh dear seems there are a lot of do's and don'ts. I am seeing my Rheumotologist on Sunday, I will see what he says about me taking it at 2am. I am curious now, will let you know.

PMRpro
PMRproAmbassador
in reply to Aussiebird87

Another option is to wake early and take it and settle down for another couple of hours by which time it will be working and the stiffness will be already much relieved.

Were they saying the pred caused disruption to the melatonin? I'd think if there is any disruption it's caused by your staying up so late to take the medication, which is another matter altogether. Are you still taking all your pred in one dose?

There are enough things to disturb sleep. No need to add any more unnecessary disruption.

After much experimentation in the early days, I moved to taking my pred (enteric coated) at bedtime (around midnight). This seemed to be the best option for me, and is what I still do. If the dose is enough, this should eliminate morning pain and stiffness.

Me = GCA Nov 2016.

Hi Bonny, do you take all your dose at midnight? Does the pain come back anytime during the day? What dosage are you on? Trying to figure out what works for others, so that I can try to experiment now I am down to 7mg. I usually get to bed by about 1am, mainly because I take my amitriptyline about 9pm, and takes a quite a few hours before I start to feel tired. I need to change this pattern and get to bed earlier.

PMRpro
PMRproAmbassador
in reply to Aussiebird87

Remember enteric coated pred takes a lot longer to be absorbed and start to work than ordinary pred - which are you using?

Aussiebird87
Aussiebird87
in reply to PMRpro

Of course I remember now, you use a different Pred. Mine is the ordinary Pred, so it wouldn't work like the one you are taking. I have to split mine to get as much relief during the day.

PMRpro
PMRproAmbassador
in reply to Aussiebird87

Yes - but so does BonnyQuine. And the pred she uses is not the same as the one I use.

Have you tried taking your pred at 1am before bed? 2am is said to be the optimum time to take the palin uncoated variety to minimise morning stiffness. How long that lasts through the day depends on you - it doesn't matter what time I take mine, a single dose is all I need,

Hello Aussiebird87

I do take my whole dose at midnight. When I took it in the morning (at first) I did used to wake up next day with pain, headache and 'general debility'. Taking it at midnight did improve things. Apart from a couple of flares in the early days - GCA dx Nov 2016 - it did keep pain at bay for most of the 24 hrs, but not the deathly fatigue which has been my most persistent and troubling symptom.

The main reason I tried that schedule was to try and minimise pred side effects including extreme fatigue and muscle weakness which I found really disabling. Still is, but not as bad as before. Wanted to sleep through the worst. Have had some much better times but, now I'm down to 6.5 - 7mg I seem to have hit a barrier - seem to be getting weaker, and a bit 'light-headed', with intermittent nausea and 'wandering' aches and pains. Some pain and stiffness on getting up from chairs, and still struggle getting up the stairs. Also still have steroid-induced diabetes, and do all I can for that - mainly minimum carbs - but haven't been walking much lately because of feeling weak n wobbly. Sorry for moan. Hoping it's the adrenal problem, and that it will resolve itself sooner or later.

At the start of GCA I slept for hours, night and day, for months. Then I went through a phase of hardly sleeping at all for months. At the moment it's a bit unpredictable, but I too can usually sleep somewhere between midnight and 1am. I tend to be rather wakeful after 6am, but usually manage to get a couple more hours in between listening to early morning radio 4. As far as I'm concerned, sleep is good any time I can get it, but I don't seem to sleep during the day now. Just slump! Haven't tried amitriptyline.

I suspect we each need to work out a pattern we can live with.

Best of luck with yours.

You must have been on a very high dose since you have GCA, I couldn't imagine being on more than 15mg, that caused me enough harm, put on 4 stone in a year! I hope it has improved for you. I do get fatigue, I find myself laying down most of the day. I will try taking my pred before I go to bed and see what happens. Anything is worth a try.

I do have Osteoarthritis in my lumbar and cervical, need all my lumbar fused and caged, it is a mess, but surgeons said it was too risky. Told me to come back when I can no longer cope, then I got PMR soon after. I have a stairlift at home, which is a blessing, I use a walking stick if I go outside my house, rare occasions but my husband likes to get me out, even for an hour every couple of days or so.

I have been on 7mg for about 4 months. l was nauseas, which was so bad I had a colonoscopy and endoscopy done 2 months ago. Everything seemed fine, but was told it was my IBS that flared up, he said the pain could be coming from the sciatica. So the Gastroenterologist told me to take Probotics and Amitriptyline, which has now stopped the nausea, but still get bloated. I have changed my diet, as need to lose weight.

The Rheumotologist thinks I have Fibro, so has also asked me to take Amitriptyline to help the nerves, but a higher dose. So both prescribed it. It does help with the nerves, I get some relief and helps with sleep. I still get up to the bathroom a few times a night, but can go back to sleep straight away. I was also checked for diabetes, because a lot of the symptoms sounded to my GP as steroid-induced diabetes, but that came back normal.

You have a right to vent, it is horrible to go through all of this. I too keep wondering if it is the Adrenal trying to come back.

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