Still aching.

Hello Tricia, I agree with sue, you are clearly on too low a dose currently and I have to ask, did you continue to reduce even when more pain returned or has this pain come on suddenly. Either way to be at 2mgs after only 2 years is a little on the quick side. Yes, I know I have had a flare so that put my recovery back some months but nevertheless I am currently on 7mgs and also approaching my second anniversary.

you need to up your preds to the last dose level whereby you were pain free, stay there for a good 6 weeks and then reduce slowly using the dead slow and almost stop reducing method. I use this method but only ever reduce by .5mgs. 

not every pmr sufferer has raised esr/crp levels so the fact that yours are not showing raised levels does not mean you no longer have inflammation.

all the supplements that we take, and I take, vit d, calcium and magnesium, all help with the side effects of steroids, however, none of them help with reducing the inflamation caused by the auto immune condition that us currently bubbling away in us. This condition will hopefully eventually burn itself out but in the meantime the correct dose level of preds will keep the inflamation under control. Regards, tina

Eileen, I'm in a similar dilema.  I've been at 12 mg for a little more than a month and have signifigant stiffness. However, I've been keeping a daily log of my symptoms for over a year and it's very revealing.  The nature of the aches and pains I'm currently experiencing have haunted me throughout my 18 month journey reducing from an original dose of 40 mg.  However, the stiffness and pain has never lasted this long.  

If I wanted to test out whether my current dose is sufficient by upping the predisone, what level of increase would I try?  3 mg? 5mg?

If I did up the dose to 15 mg or higher and saw some relief, what is the recommended schedule of reduction back down to 12?  I'm very sensitive to drops and have only been reducing by .5 mg every 3 to 6 weeks since reaching 18 mg. Would I have to take another 6 months to get back down from 15 to 12 mg.

 

Hello Jean, I'll leave Eileen to answer your query, but just to say that I always stay on each dose for 4-6 weeks, mostly always 6 weeks, then there's the 2-3 weeks on the dead slow and almost stop method of reduction and I only ever reduce by .5 and not a whole 1mg. Good luck, tina

If you are that sensitive, maybe. It is impossible to say. Has the pain and stiffness gone away with previous reductions? If so, it suggests you are about at the right dose for you at present.

Were you diagnosed with GCA or with PMR? When do you take your pred? 

You and I have dialogued many times.    Although the diagnosis was PMR, my initial symptoms and overall history indicate that GCA was likely present.  No need to get into all that again.  It's something I'm very confident about.  I haven't tried to convince any local practitioners of this conclusion as I expect it would not be welcomed or accepted.  Dealing with locum practitioners in the Northwest Territorries, the only priority is to get off prednisone ASAP.

The pain and stiffness is really variable with each reduction, but always there to some extent.  As long as the degree of pain or location of pain doesn't increase/change at a level, I take another .5 step down.

I also have pains that I know aren't PMR, which have been dealt with by Bowen.  They tend to creep back if I don't do the exercises given to be by the Bowen therapist.  My bad.  Sometimes I'm afraid to do them when pain(s) are increasing.

Interesting enough, my post this morning may have been a bit cathartic. I'm feeling much better today. I've been avoiding my 2X weekly aquatic exercise class for the past 2 weeks not wanting to make matters worse.  I felt like I'd been hit by a truck last night, but today the aches and stiffness have lessened.  

I began taking my prednisone around 2 am with a bit of plain yogurt several months back.  I usually wake at that time anyway to go to the loo.

Don't we all love the mysteries of PMR and prednisone reduction.  

I guess I'll stay the course for now.

Thought it was you but I couldn't remember the last details - my bad!

I think it does tend to take longer for any steroid withdrawal to fade as you get lower - by definition it's a bigger percentage drop. Are you using the "Dead slow and nearly stop" approach or just every day one dose to every day the new dose straight off?

DSNS, usually beginning at 4 days old dose.

Perhaps try from more days old dose and see if that helps? I feel quite disgusting for the first 3 days of new dose and now I'm down low I repeat some of the stages too. Not that it does much good - get totally stuck at alternate days 4 and 3. Accepting 5mg for at least 6 month I think and giving up the unequal struggle for a bit. As approved by my GP.

I'll give it a try Eileen.  I guess it's particularly frustrating because I'm at 12 mg.  A slower approach would be much easier to accept if I was at least 10 mg or less.  This time last year I was at 18 mg.  I know slow is best, but it's hard to accept that I've only reduced by 6 mg in 12 months, and still suffer all this pain and stiffness at times, allbeit moderate symptoms in the grand scheme of things.

Thanks for listening and good luck with your continuing journey.  It's so great to have you to "talk" to on these down days.

 

In some people pred doesn't work as efficiently as in others - it may be you are one and that would mean that your 12mg is only doing what 9mg achieve for someone else. That's why we keep emphasising that everyone is different - unfortunately some doctors don't realise it either.

Very interesting Eileen.  You may have hit the nail on the head.  

I came to another realization yesterday....In one of my replies I said I was feeling better.  It didn't last.  However, I realized my condition has been deteriorating as the day progresses.  By the time I crave my bed, my arms are so sore it hurts to push myself up from my armchair.  When I wake at 2 am and get out of bed to take the prednisone my arms are worse and my whole body feels like I have a really bad flu.  I struggle to get out of bed. When I get up at 5 am I'm still a bit flu sore, but it improves in a couple of hours.  I fell good until about mid-afternoon when things start to go sour.

It may be that the effect of the prednisone is wearing off quicker than it used to.  Is that a possibilitiy?  

I thought I'd try a bit of an experiment for a couple of days and take tylenol on a regular basis to see if it helps.  From personal experience I know that tylenol has helped with non PMR pain in the past.  If it doesn't help I might try splitting the 12 mg, taking 7mg at 2 am and 5mg at 6 or 7 am.  

 

Thank you Eileen and everyone who has offered advice. I really did believe that as my bloods were low my PMR was on the way out. My doc said to reduce and I followed your plan Eileen But at 2mgs I felt awful and depressed. Yesterday I took 5mgs and I feel a little better so shall continue with this dosage. Once again thank you everyone for your kind help. I feel better already. I'm not sure these docs appreciate the problem.

Tricia.

I'm pretty sure most of them don't. On one of the forums a former GP who now has PMR said her perception has changed dramatically - before she was desperate to get patients to a low dose asap, now she was asking whether one or two mg here or there really matters in the great scheme of things.

I think that sound liek a plan. Though I'd rather 1mg more pred than use tylenol/paracetamol.

Hello Jean,

I am very much like you, very sensitive to drops in pred, I was put back up to 15mg pred last december, and now only at 11mg.  The reason I posted to you is to say I have to split my dose and it works better for me...I have to drop VERY slowly....but remind myself of tortoise and hare!

I have to admit though, with the dreaded Christmas coming upon us (only because of sheer effort) I am tiring because of the shopping....I know people will kindly post, to do it online....but I don`t have much luck with that!

Good luck, we will all get there in the end.....

I have an even better solution - I don't do any! My brother decided many year ago he didn't want to do even kids Christmas presents because of cost (we lived abroad at the time) and we already didn't do presents for my husband's family (his brother was most peculiar   ). 

When PMR struck I simply couldn't do it - shopping of any sort was daunting and thinking out of the question. Our daughters get money transferred to their bank account for the entire family and we say we want them to get something the whole family will enjoy or benefit from. It means they won't get things they don't need - and will have to throw away other things to accommodate them anyway since they have small flats with no storage except in the roof. 

It was all very different when we were children - Christmas and presents were a highlight in a rather dull world and even a small bit of glitter was massive. Today we eat and buy far too much all year  so it has become a feast that requires enormous quantities to make it stand out - and retail encourages us to spend, spend, spend. Then what do we do in January? We throw it all out and diet...

Absolutely agree....we suggested to hubby`s sister no presents this year (she`s 75, and still working!) oh no she said we can`t not buy for each other, but what about just a token present..ahhhhhh, she just dosen`t get it, a token present still has to be shopped for!

My daughter-in-law has got many things for me...son/grandchildren`s...

I am going to use this year as saying this is my last and money will be given....my husband hates it so he`ll agree anyway....too bad if he didn`t!

Yes, xmas was different when we were young, (think I`m about your age) my mother was widowed in her 30`s...so we didn`t have much, but what we did we really appreciated.  I have only one son...never spoiled him and appreciates everything bought for him...

We buy the turkey....and son/d-i-law cooks it....all happy with that...

.

What may I ask is xmas like where you live compared with Uk?......I have a fantasy of lake Garda all lit up and christmassy....but I think I`m dreaming from memories of a wonderful holiday there (year of twin towers)...and pre PMR!  Do you put a tree on the balcony??

We don't llive at Lake Garda - we're about 2 hours drive north, up in the Dolomites. It is VERY likely we'll have a white Christmas although last year it rained all day in the village - the snow was quite a bit higher but it was there, not an awful lot though. This winter has started much the same - no real snow at all yet.

The waiting for Christmas here started last Thursday evening when the 4 big Christmas markets in the region opened at 5pm. The towns are all lit up and every village has a tree and lights - I assume ours are lit, I haven't been out in the evening yet! Yesterday was lots of church bells for the first Sunday in Advent and many people will have lit the first candle on the Advent ring at home. Next weekend is the Nicolaus procession - someone local rides into the village dressed as Bishop Nicolaus and distributes bags of goodies to the children, he also does "home visits" if you put your name down. Christmas is very family-orientated here and celebrated on the 24th because this is really a very Germanic area. The 25th is when the Italians celebrate - the 24th is just church. The 25th they eat and eat and eat...

When we lived in Germany I used to love driving home from town - every day another house had lit up a tree either in the garden or on the balcony but they don't seem to that here as much but they do put lights on the balcony - even we do that. The tree in the house is rarely decorated before the afternoon of Christmas Eve. Here I saw people carrying a tree home on Saturday - got to shop early to get the good ones! We don't bother at all - I know, bah humbug really but why? We will have no visitors, all our grandchildren are in their mid-teens now anyway. It was different when they were small but even then, we rarely saw them at Christmas as the NHS doesn't stop for Christmas any more than it does for a weekend (despite what JHunt would have people believe). David's department was closed but one daughter was a nurse and the other a paramedic and both partners worked in the ambulance service - if they didn't work Christmas Day they worked Boxing Day usually. The nurse is no longer a nurse - but still will be working on Christmas Day as she's swapped to the social care sphere. She thinks her (not yet ex) husband is working too - he's now on the ambulances. So her children will be with a friend of hers I think. 

Christmas is really all quite low-key here outside the family - except the tourist industry is at full stretch as it feels as if half of Italy comes here at weekends to the markets! It's a ski resort too - so for the last week they've been making the snow so people can ski despite the weather! It was awfully quiet on town on Saturday so I suspect people don't bother coming unless they can do "proper" winter weekends. We'll be able to tell next weekend - Nicolaus on Sunday AND the Tuesday is an Italian holiday - the Feast of the Immaculate Conception - which means a long weekend this year. It probably means the place will be heaving on the roads at least! We will walk into town to the market one day - but mid-week! I think they all go on until the 6th of January this year - Feast of the Three Kings. Then Chrisstmas will be well and truly over.

Thanks Linda.  I know I shouldn't complain about being the tortoise.  It's the only safe way to reduce.  This is my 2nd day splitting the dose at 2 am and 6 am. The jury is still out.  I have more pain and stiffness getting up in the morning, but it eased off an hour or so after taking the 2nd dose. However, I'm troubled by the degree of fatigue yesterday, which lasted until early evening.  I know that may have nothing to do with the timing of the meds though.  Fatigue is a pretty constant companion.

Christmas doesn't worry me too much any more.  I live in a small town so there are no malls to wear myself out shopping.  Very little choice here really.  We will be going to one of our son's home for Christmas so I've sent a few items ahead via on line shopping.   I had to do a lot of searching this year to find the items I wanted, but it sure beats roaming the stores.  We'll have a couple of days in Victoria BC before Christmas and I'll likely hit the mall just to see all the decorations, watch all the craziness, and pick up a few stocking stuffers. 

Good luck to you too.  It sounds like we're running neck and neck in this "race". 

Just a thought - might you not be better taking them the other way round and the second dose much later in the day? When splitting the usual suggestion is 2/3-ish in the morning for the day ahead and the rest in the evening for the morning. Do you see the logic? What you are doing now is taking not enough to deal with the biggest part of the problem which is the new inflammation of the day first thing in the morning - you still need the 6mg to get that result. Taking the pred at 2am means it isn't doing anything until after 4am and then it isn't enough. Logically, it would be better the other way round.

Wow, that all sounds lovely....there is obviously more of a religious element to Christmas than here, well to some extent anyway.......after Christmas here it`s then a mad rush for the sales, I just don`t get it....

I went on a trip up the dolomites when in Italy, it was wonderful, so can imagine it.

Here (Norfolk) it is dark and miserable....so will be glad when shortest day gets here.....I always think we can feel worse when stuck indoors, on these sort of days....

I feel for your family working in the NHS or care sphere, and hope that things can be sorted as regards the doctors etc, I don`t expect your family recommend your grandchildren go into the NHS as it is now....they want nurses to now take out loans to study....why should they, we are short of them now...........but I don`t hold my breath with this arrogant goverment.....well that`s my rant for the day....

Hope you enjoy the market!

 

I keep hoping our grandons would chose being an electrician or a plumber...

No, the girls love their work but it hasn't done their physical or mental health any good turns - PTSD from picking up the pieces and sleep deprivation when you work shifts. If the grandchildren wanted to go into health I'd tell them to emigrate.

We too have gone for the cut the commercial bit of Christmas. Family get money and can buy what they would like. Husband and I don't exchange presents but give to charity....have done for years. We don't need anything....we are fortunate. I feel it's a family time and they all want to come to us but will share out the tasks. Despite downsizing we still have the bigger house!! Residential care would solve that one. It'll be the blue pill for me and straight to the box! 😳 Sounds lovely where you are. We have snow here and more forecast for tomorrow.⛄️⛄️ Usual roads are problematic and it was very icey this morning. I struggled to get the car door open. It'll soon be the shortest day. The snow lengthens the daylight and it is certainly much brighter. It's been dark some days at 2 o'clock and earlier with the rain and dark skies. Open fire lit and I'm very reluctant to move now! 

Quite right...my son is an electrician....brings it`s own stresses!  My husband did awful shifts for many years which made him ill...but retired early so got out when he could...

Many won`t have that choice now, what with pensions private or otherwise being what they are....

Should be glad we haven`t got Silver49`s snow....wherever that is....

According to the Scotsman today Scotland is in dire straights - and even floods at Cramond Brig. My mate who lives in Rosyth says its beautiful blue skies there! 

All sounds about normal for SCotland at the end of November - do you remember when the Cairn'o'Mount to Tomintoul road was closed in October until at least Easter? When we first went to Uni by the time you got to Blairgowrie there was a foot of snow and rising. And I used to sit in the 9th floor of the dental hospital watching sunrise at about 10am and sunset before tea break in the afternoon. This year I've barely noticed the dark night - never mind, only 3 week to the shortest day and then the nights draw out again 

I hear what you’re saying Eileen and will think about it.

Do you see any problems doing what I’m doing given my intent to “top up” the prednisone in the morning to see if I can remain more stable throughout the day?  If it doesn’t work out as planned in the next few days, I was planning on increasing the 2 am dose by .5mg or 1 mg for a few days.

I hesitate taking the second dose later in the day for a couple of reasons.  I have previous experience with taking prednisone in the evening.  I had to do it at higher doses for any months to reduce the totally incapacitating fuzzy brain I was experiencing during the day.  During that time I not only had difficulty sleeping, but was up at least four times a night to go to the loo.  Taking it at 2 am has enabled me to have a better sleep.  Still not great, but I can manage 6 or 7 nights most nights with fewer runs to the loo.

I don’t mind dealing with a few more pains and stiffness for a few hours after getting up.  Particularly give my early rising time of 5 or 6 am.

Is my confused steroid brain missing something in trying to think this through?

Nothing against the 2am dose - it was more a thought that you should take the 6mg then and the rest considerably later in the day, maybe lunchtime if taking it later interupts sleep. 6mg should give you a decent day and taking the other bit later keep the goodness going longer, if you see what I mean.

On the other hand, if the early morning stiffness isn't that much of a problem for you then why not wait? The idea of the 2am dose is to be pain-free when you get out of bed but it means you need enough of a dose to work. 2mg is obviously not enough for you. If you get up at 5am you either need more of the dose at 2am or you wait until you get up and deal with 2 hours of discomfort until the pred works. Will that then allow you to go to bed in the evening and sleep better?

I'm actually taking 7 mg at 2 am and 5 mg after getting up, for a total of 12.  I'm doing pretty good this morning.   I'll stay this course for a few days, perhaps moving the second dose a bit later and see how it goes.  

Thanks for all the advice Eileen.  It's so great to 'talk' this through with someone who knows her stuff.

What made me think you were taking less at 2am?????? Sorry! I suppose a straight 2 person conversation would stop that ort of mistake.

Changing things around will often take a few days to get used to - fingers crossed it will improve. 

No worries.  You're amazing at keeping so many conversations going.  I don't know how you do it!

Yes. I certainly remember the road being closed for that length of time. I did travel on it in Summer before they straightened it out a bit! Cars and buses were often sitting waiting for their engines to cool down. I remember being a student in Aberdeen in the sixties and all the buses were off. The snow was up over my long boots. Changed days. Sunrise and sunset are still like that just now. I used to  commute over Tullybaccart and that was quite a challenge. One night the police were about to close the road  after I got over and I had to tell them there had been lights behind me at one stage. The next day there was an enormous snowdrift at the top and only room for one car. I often went over on a wing and a prayer in Winter. Happy days. 

The snow is in Perthshire and further north .

I can remember the first winter we lived in Meigle I had to call OH and ask if he was already about to set out on his way home via Auchterhouse. In an hour or so he said - er, no, NOW unless you want to travel via Perth! He listened, they closed it behind him - and the next morning he decided that getting to Ninewells via Perth was a trifle excessive. First set of UK winter tyres invested in...

I sometimes travelled via Meigle if it was particularly bad. My colleagues knew it was Winter when I had my shovel, overnight bag and blankets in the boot. I also had my iron rations and a flask. 

What a good girl you were!!!! 

Ha ha. The only time in over 30 years I ever used the shovel was to dig my manager's car out of the car park!! 

I trust you handed over the shubble to them? Best use for a manager I can think of...

I was never afraid of tackling managers (verbally) if I thought something wasn't right! Started as a student and continued .....almost put my career on the line at times.

Snap! 

I used to take the bigger dose in evening and had your problems....on Eileen`s advice, I swopped round, larger dose am, smaller pm...only wake once now....whatever works for you though...good luck...