Advice if possible please: Last night I went to bed... - PMRGCAuk

PMRGCAuk
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Advice if possible please

yorkieme
yorkieme

Last night I went to bed 99% free of pain in my shoulders,arms wrists and hands and so much so that I didn't bother taking Codeine which I usually do,this hasn't happened for weeks and weeks.

This morning I woke up with the usual severe pain in my shoulders,arms,wrists and hands. Does this suggest to anyone that my dose of pred' is too low at 30mg ? I thought the pred' was supposed to hold down the inflammation ? or yet again am I failing to understand how this medication works ?

15 Replies
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Hello, the PMRers will be along soon, but I’d say that if codeine was doing the trick and you missed it then got pain, id be querying whether this is PMR pain. Normally other pain killers are ineffective with PMR. 30mg is above the higher level of 25mg need for PMR, but perhaps you’re one of those who don’t absorb much of it. What sort of activity have you been doing?

yorkieme
yorkieme
in reply to SnazzyD

Interesting last sentence. I am doing such as housework,walking,shopping and odd jobs but nothing that I would normally consider too much.It does bring me out in heavy sweats but that happens/can happen day to day even when I do nothing.

Although I use Codeine as advised by my G.P. it doesn't provide total pain relief,just brings it down to a manageable level,not sure what you mean about other pain killers being ineffective,do you mean paracetamol/Codeine etc ?

PMRpro
PMRproModerator
in reply to yorkieme

In PMR pred is effectively your painkiller - very very few people find that any of the "normal" painkillers even touch PMR pain even though the older guidelines suggest that NSAIDs - non-steroidal antiinflammatory drugs - may be used for "mild" cases. If 30mg pred isn't holding your pain but codeine does it does bring up some questions as to the cause.

Have you tried splitting the dose? The antiinflammatory effect of pred lasts 12-36 hours depending on the person - and if you are to the lower end of that range you will find the effect fades long before the next dose is due and that is typically in the morning when the new lot of inflammatory substances are shed in the body to add to it.

Hidden
HiddenModerator
in reply to yorkieme

And all those things you mention can cause delayed onset muscle soreness which painkillers may help but until you drop some and really rest and pace yourself you are just negating any pred anyway. Many of us find housework, shopping and even walking impossible and if that much pred is not working then either it's not PMR and/or you are doing too much and whatever is wrong your body is in full protest mode.

SnazzyD
SnazzyD
in reply to yorkieme

I’m surprised you’re managing all that to be honest. Pred does give you false energy so you can wear out your body without realising so it doesn’t have the resources to deal with all the attacking itself it’s doing. On 30mg I was so weak I couldn’t do it if I wanted so I just sat there in a buzzing heap. Also, Pred can hide damage to the muscles that become less tolerant of useage, and this damage can be delayed by a day or two. One thinks one has got away with a cheeky bit of gardening then, bam, pain.

Bear in mind codeine can give you rebound pain sensitivity and as Mary63 suggests, there may be some codeine withdrawal afoot.

So, all in all there are a few possibilities.

I think this may be withdrawal pain from the codeine, which in my experience (recovering from total knee replacement) tends to mimic the pain you are taking the codeine for...clunky words,,,sorry, but I hope my meaning is clear enough. If you are used to taking codeine daily then when you stop or miss a dose, your body lets you know. If you don’t wish to carry on taking codeine stop gradually by spacing out the time between doses, and/or gradually reducing dose.

I was having that problem when taking Pred in the mornings.

I came on here and read what others said. I switched to splitting my dose. Yesterday I did half in the morning and half at night. I woke up this morning with much less pain. I will get through today and take full dose tonight -which is what I was doing when first diagnosed. It was only when I got down to 10mg that doctor changed me to the morning dose - and it didn't work!

I found that taking pred in the evenings works so much better for me. Taking it in the mornings meant I was sore and stiff for work and at the end of my work day by 2pm I was painfree.

I take Tylenol (acetaminophen) every night before bed. If I don't I wake with arthritic pain in one or more areas like knees, shoulders, wrists and back.

For me, PMR pain is muscular, joint pain is usually liked to osteoarthritis.

Perhaps the codeine has been doing that for you.

yorkieme
yorkieme
in reply to nuigini

Thanks for your response.

During my recent second visit to hospital,and for the second time sent to the Corona virus unit due to having pneumonia,a rather nice consultant said to me,"this is a very complicated case,we are going to need a large team across numerous disciplines to make any progress," a rather less nice consultant of the I'm not hearing you type who seemed to be the senior then isolated me and sent me to the Covid-19 ward.

However,I am now waiting for the results for various blood tests with my rheumy' including those from my cancer specialist but include R/A Osteoarthritis and a few I can't spell or remember.lol.

The pain that I feel around 3 to 4a.m. is in the top of both shoulders quite severe - both wrists quite severe - the muscle area at the base of both thumbs quite severe - the joints at the base of my fingers with both hands quite severe and very swollen so it's weird to say this but I feel like,(may not be correct,) it's a mix of both for me. Muscle and joint.

Just now a pattern is developing,early morning bad pain take Codeine at 7am. Take 25mg pred' plus magnesium/omega 3/B3 supplement, get through to lunchtime onwards when pain eases considerably,take Codeine before bed and get to 1:30 ish' struggle through to 3/4 am. and take Codeine.Rinse and repeat.

However I have just read a very interesting post by PMRnewbie2017 and I am going to try split my dose of pred'.

Thank you again.

That certainly sounds like PMR pain, which generally is worst upon waking. Although Pred sometimes keeps people awake, it does seem to work best for some when split between morning and night. It is also possible that 30 mg is not enough. Are you early in your treatment? I’m in US, where treatment seems to be more aggressive. I started on 40 mg. A friend started at 50. The rule of thumb is to take the lowest dose you can that keeps you pain free. Everyone is a bit different.

PMRpro
PMRproModerator
in reply to RiverKings

The PMR guidelines, in the US as in Europe, say the starting dose should not be above 30mg. If you need more than that, the putative diagnosis of PMR must be considered questionable until all else has been ruled out. One of the characteristics of PMR is its response to a moderate dose of pred - that would normally be seen as up to 20mg. 40mg and above should only be used if there is any question of GCA.

rheumatology.org/Portals/0/...

RiverKings
RiverKings
in reply to PMRpro

Thanks for the correction and the article. I didn’t know the highest dose recommended was 30 mg a day. That’s what our forum is for!

yorkieme
yorkieme
in reply to RiverKings

Initially my G.P.gave me 15mg pred' on the basis that this was the lowest dose for what he believed to be PMR. This was mid December 2019 prior to me spending five weeks abroad during which time the situation became very mixed up,and by that I mean the 15mg that worked initially lost effect within less than a week and my five week holiday became absolute hell trying to survive on Tramadol and 15mg pred'.

It became clear after my return from holiday that I had pneumonia,had it for quite some time,but two days after my return the G.P. increased my dose on 13th Feb' to 20mg,a day later called me and increased it to 60mg in the belief that it could be GCA.

I was then taken into hospital and the pneumonia was found to be the problem,sadly I ended up in the Corvid-19 unit where a rather bullish consultant insisted that I didn't have PMR/GCA but they tested me for the virus.

I returned home and rather stupid of me and rather ignorant of the potential implications decided no PMR/GCA why do I need steroids and dropped from 60mg to around 20mg in a matter of three/four weeks.

The rest of the story is equally confusing other than to say that I also have Non Hodgkins Follicular Lymphoma .. more confusion but not receiving treatment as yet.

My G.P. (who to be fair I can now understand may not have sufficient expertise,)and my Rheumatologist have both expressed the view that it is a puzzle,they don't yet know what the problem is.

That's where I am now,trying to balance the steroids with pain relief,and to some extent equally ignorant regarding the whole subject.

Thankfully I found this forum and it is definitely helping my understanding.

Anyway,that's my story so thank you for your time and response,every single post provides me with little bits of info';

Thanks for telling your incredibly mixed up history, though I can see how it all happened, another victim of the covid19 in a different way. If you are not on steroids like prednsione for only a few weeks (usually they say a month) you can taper off very fast.. so I would think with the lymphoma you'd want to be off them fast.. so you'd have to balance that with what is told here ..but I know little. I was on cortisol a few times for 3 weeks and told to taper over 3 or 4 weeks.

I'd be pushing for treatment advice over the phone or telemed as fast as is possible,maybe your GP should refer you to some specialist, or better still if the cancer clinics are reopening with their items of specialists but your GP may know? ...pity about that hospital not following thru with your treatment team! and lovely to "meet you". I'm no an expert and can't even read thru ally he posts on here , but IT's a really helpful forum.

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