Morning Pain

[Rosiecavapoo]

Hello

I was diagnosed with PMR just over 2 weeks ago.

I have found this site so so helpful and learnt so much from all of you so thank you.

My starting dose of pred is 15mg with a view to move to 12 1/2mg by week 4.

My problem is that I still wake up every single morning in tremendous pain. Back, shoulders and neck mainly and so stiff it’s still difficult to get out of bed.

Once I have taken my medication my pain goes and I would say I’m 80 to 90% pain free for the rest of the day. With a few aches and niggles by bed time.

Is this usual to still feel like you’re back to square one on waking then meditation kicks in it’s a totally different matter pain wise?

Thank you x

[DorsetLady PMRGCAuk volunteer]

Many do have some pain in the morning before Pred kicks in….but yours does seem more extreme than most….and if it returns by bedtime, then would say 15mg is not quite enough.

That maybe because the built up inflammation is taking longer to get under control as well as fighting the daily production of cytokines that cause the inflammation occurs - and that happens around 4am. So you may require longer on current dose, or a slightly higher dose - say 17.5mg or 20mg.

You really need to get a better response before you consider tapering otherwise it will just get worse…

Have you spoken to GP or whoever diagnosed you?

But are you trying to do too much during the day when it has kicked in?

Have a look at this info post- and please speak to your doctor -

healthunlocked.com/pmrgcauk...

[PMR_sufferer1 in reply to DorsetLady]

The other option is pred split dose.I started on 15mg.splitting it 5 at 8am 5 at 3pm and 5 before i went to bed.

I know this draws critisism but it works for me.

Better than upping pred in the hope it helps then having to taper longer.

I am down to 9mg fingers crossed i can reduce witgout a flare. I take 5 at 9am and 4 at 3pm.

As I say this wirks for me but may not be everyones solution

[DorsetLady PMRGCAuk volunteer in reply to PMR_sufferer1]

You’ve replied to me not Rosiecavapoo but she should see it anyway…

[PMRpro Ambassador]

Hi and welcome to our happy band!

The inflammatory substances that cause the problem are shed in the body in the early morning, about 4-4.30am. The sooner after this you take your pred, the less inflammation has been caused and so the faster it will work on the pain. The ideal time to take pred is actually about 2-3am so it is at its peak in the blood by 4am and so no inflammation gets started. The antiinflammatory effect of pred lasts between 12 and 36 hours - if you are towards the 12 hour end, the symptoms can return before the next daily dose is due.

It sounds to me as if the 15mg isn't quite enough to have really cleared the accumulated inflammation out so there isn't a lot of leeway as the antiinflammatory effect wears off. And as DL asks - are you using your arms during the day, catching up with what you haven't been doing? It isn't just the pred - you have to rest and pace to make the most of it. And the fact that the niggles appear before bed suggests you are at the low end of the range for antiinflammatory effect as well.

One way of dealing with that is to split the dose - but it does require that you have cleared out the inflammation. To split, you take about 2/3 of the dose in the morning and the rest later enough in the day so that the freedom from symptoms lasts until the next dose is due. So a couple of approaches to thing about.

[Rosiecavapoo in reply to PMRpro]

Thank you for your valuable advice DL and PRMpro.

Regarding resting and pacing myself I can honestly say I have been careful not to overdo daily tasks and my pace is much much slower.

I think I will follow what both of you have said and speak to GP who diagnosed me and try taking a dose at 2-3am and see how that goes.

Thanks again

[Rosiecavapoo in reply to Rosiecavapoo]

Ladies may I also pick your brains about another issue I have and was going to post separately about this but makes sense to ask under this thread as you have some background on me.

Six months ago I was diagnosed with costachondritis. My symptoms fitted the profile exactly for that diagnosis.

I suffered as I say for six months as the pain got worse and worse in my upper rib cage eventually spreading to my shoulders. Which led onto into my neck and back. I was in such a bad way I was on the brink of going to A+E as I couldn’t bear the pain any longer.

Spoke to my GP and she took a blood test. Inflammation level raised at 61. This is when she diagnosed PMR.

Earlier I told you my pain was 80-90% better during the day but I still have rib pain all day every day although it feels dampened down since being on pred.

I asked GP if it was possible I had both conditions her response was that I have a lot going on in my body so who knows!

I wondered what your thoughts might be on this.

Thank you so much for listening to me. X

[DorsetLady PMRGCAuk volunteer in reply to Rosiecavapoo]

There does seem to be some sort of connection- and we do often get queries on it.

This is a previous post on the subject - healthunlocked.com/pmrgcauk...

..and there will be related posts you can look at….

But you will get more responses if you raise a new post with costochondritis in the title - if you feel you need to….

[PMRpro Ambassador in reply to Rosiecavapoo]

Could well be the case - costochondritis can last a long time and unfortunately although the pred does help, the blood supply to the areas involved isn't brilliant because of the type of tissue involved. It will resolve - but may take some time.

There are other rare reasons for chest pain in PMR but if they were satisfied with the diagnosis before no reason to worry about them.

[Rosiecavapoo in reply to PMRpro]

Thank you so much

[PMRnewbie2017]

Welcome. Most of us here have the tee shirt and can relate to all you have described. Do try and take your Pred at 2am or therabouts if you can. It potentially can be a game changer but of course in some, it doesn't help. The costochondritis is a nuisance to say the least. I've had it on and off for years. There is info on Dr Google but basically any extreme stretching can trigger it - reaching for the chocolate on the high shelf of the kitchen cupboard! ? Another thing I found was to loosen my bra so it didn't squeeze my rib cage too tight. Anti inflammatories may help but because you're on 15mg Pred you'd be better off using Paracetamol for the moment.

[Rosiecavapoo in reply to PMRnewbie2017]

Thank you PMR newbie.

In fact I did just that last night. I normally wake during the night for the bathroom. I woke at 2am and took 5mg pred.

Woke later at 6.30 and oh my goodness what a difference from yesterday morning. I ‘sprang’ out of bed in comparison ha! I then took the other 10mg.

Thanks for your tips on costochonritis. Regarding bras, I’ve invested in some front fastening bras and they are a game changer too.

[DorsetLady PMRGCAuk volunteer in reply to Rosiecavapoo]

Front fastening bras - totally agree -got my first ones whilst awaiting GCA diagnosis many moons ago - but now are for arthritic shoulders [one successfully replaced 3 years] - but not wishing that on you - PMR is enough to be going on with 😂🤣

[Whippetygirl in reply to Rosiecavapoo]

Who needs a bra, mine rest ion my tummy and are quite happy there.

[Sophiestree]

Lucky you to have found this site so early in your diagnosis. I couldn't have survived without it.

[choirsinger1986]

Increasing dose to 20mg and I take pred at 5.30-6am which gets into my system by 8am ish when I get out of bed. Just a suggestion which I hope helps.

[Hidden]

Hi there,FYI ,

I am almost exactly in your time frame. I was started on 20mgs two weeks ago with good effect, but dropped it to 15mgs as per guideline because I was concerned about the effects on my glaucoma. Bad idea, flared right up again! Back on 20mgs now for 5 days and now am fine again apart from occasional aches in my shoulders.

[Rosiecavapoo in reply to Hidden]

Oh wow perhaps we should keep in touch and see how our journeys are doing occasionally sillydogsmum.

[DorsetLady PMRGCAuk volunteer in reply to Rosiecavapoo]

Easy to do via the Chat facility…..that’s private between the two of you… but we also like to know how you are getting on from time to time….😊

[Hidden in reply to Rosiecavapoo]

Certainly, however my treatment plan might be a bit different yours because I am not in the UK. Here the starting dose is calculated on the basis of 0.2mgs to 0.3 mgs per kg per day, so I am on a mid range starting dose at 20mgs. So far I have found the most difficult thing to get my head round/ accept is the prospect of long term symptom control with steroid medication till the thing burns itself out. This site has been really helpful with regard to wise thinking on this.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Please don’t drop again from 20mg to 15mg - much too big a reduction [25%] might be okay for some illness but not PMR - no matter what some guidelines say… 20-17.5mg is better- but still not achievable by everyone, especially if you’ve had a previous blip.

Two weeks at stating dose is a bit risky too, wish some doctors would give the Pred a chance to work… but many seem to be too frightened of the side effects…

[Hidden in reply to DorsetLady]

Thanks Dorset Lady, rest assured, my dose is going nowhere till i get a check CRP in 3 weeks and meet my Rheumato on the 23rd. Crawling up the stairs in pain is not my idea of fun!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Crawling up the stairs in pain is not my idea of fun!

Really? Some people have no sense of adventure 😳..but I have to agree😊

[PMRpro Ambassador in reply to Hidden]

I can still remember the change I had in 6 hours on 15mg - before, crawling up on hands and knees and down like a toddler one step at a time, after, normal!!!