Is this normal?: For the last few days, when I get... - PMRGCAuk

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Is this normal?

Aqua47 profile image
12 Replies

For the last few days, when I get up in the morning, I have more pain on my right side(shoulder, arm and back of my leg). It seems to be getting worse, today I would say 80% on my right side. Does anyone else experience this? I’m trying to reduce the pred. I’m on 8.5 or 9.

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Aqua47 profile image
Aqua47
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12 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

it could be the beginning of a flare - although PMR is normally bilateral.. it does sometimes start on one side only.. so maybe return to 9mg for a week or so and see if it makes any difference.

Just as a matter of interest how quickly have your reduced your Pred?

Unless you have done anything that could account for pain on that side? Slept oddly, wrench that side of body trying to move something, gardening? In which case, perhaps try painkillers first…

Aqua47 profile image
Aqua47 in reply toDorsetLady

Thanks for your fast reply. I was on 10 mg until 4/7, and dropped down to 9 or 8.5 until now. I would blame the extra pain in my right shoulder on something I did yesterday, but it was already beginning to be more on the right a few days ago. I bumped the top of my hand at the wrist really hard yesterday while working in the yard. I have a huge bruise now. It was a big knot, but after icing it for awhile the knot went down. It only takes a slight blow for me to bruise now. Would that be causing inflammation?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toAqua47

Bruising is very common when on Pred -it thins the skin.

When your immune system is working properly it would produce anti-inflammatory substances to help heal the bruise -but when on Pred it’s suppressed so that’s unlikely to happen to the same degree.

It might be all connected, so as I suggested maybe go back to 9mg or even 10mg for a week and see if that helps. 2-3 weeks is about long enough for body to realise reduced dose is not quite enough…

Aqua47 profile image
Aqua47 in reply toDorsetLady

I think I will go back to 10 for a couple of weeks. I was really trying to reduce the pred because I am battling with weight gain and have some moon face. I’ve been eating very low carb, but weight isn’t going down. I was still having pain in the mornings, but thought it was because the pred, taken at around 8 am, was worn off. Should I be taking enough not to have pain in the morning? It usually is pretty much gone by 10 or 11.

PMRpro profile image
PMRproAmbassador in reply toAqua47

Are you eating as low carb as you think? Usually when people struggle we find they are mistakenly eating a lot of fruit thinking it is healthy or missing out counting hidden carbs they haven't thought about.

The new daily dose of inflammatory substances is released in the body each morning about 4-4.30am. The longer you leave it after that to take the pred, the more they can achieve in the body and the more the pred has to do. The ideal time to take pred is 2-3am - then the inflammation never has any chance to get hold as the pred is there, ready and waiting to stop it. If you don't want to wake up then, we used to suggest waking early to take your pred and then settling down for another hour or so so it is working by the time you want to get up for the day. Often that works well but for some people the antiinflammatory effect of pred lasts a lot less than 24 hours and has worn off. Then you might find splitting the dose helps - about 2/3 in the morning with breakfast and the rest later enough in the day to carry the effect through the full 24 hours/

Aqua47 profile image
Aqua47 in reply toPMRpro

I will try taking the pred around 6 am or earlier instead of 8. I usually wake up around 6. I was thinking it might bother my stomach as I’m sensitive to most anti-inflammatory medications. I have tried splitting the dose, but it kept me awake.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toAqua47

The substances that cause the inflammation/pain are released about 4am in the morning -so the earlier you can take Pred the better -it does take a hour or so to get into your system.

Some, if they wake early take their Pred with a spoon of yogurt or something and then go back to sleep for an hour and let the Pred work… does that sound possible for you?

Bcol profile image
Bcol in reply toAqua47

I take mine around 02:00ish with some yogurt. Also work on tapering at 0.5mg on a five week taper. Not set in stone and only start next taper if all feels OK and under control.

PMRpro profile image
PMRproAmbassador

Remember that you are not reducing the dose relentlessly to zero - you are tapering it slowly to find the lowest effective dose, the lowest dose that gives the same relief from symptoms as the starting dose did. And now you are down to 10mg, you shouldn't be trying to reduce more than 1mg a month because as DL says, it takes 2 or 3 weeks for your body to build up enough inflammation for you to notice.

Do you just drop the whole amount from one day to the next? If so, you might find it more comfortable and less confusing with the pain if you were to use one of the slowed tapers we talk about on here a lot which spread the change in dose over a few weeks so your body gets used to it slowly.

Aqua47 profile image
Aqua47 in reply toPMRpro

I went from 10 to 9 fir a week or so, then 8.5 about every 2 days.

PMRpro profile image
PMRproAmbassador in reply toAqua47

Much too fast - 10 to 9 in a month is too much for some. No step down should be more than 10% of the current dose and it should take at least a month to achieve it. At 10mg that is already 1mg, by 5mg it is 1/2mg - there is no hurry, In fact, more haste, less speed!!!

PMR_sufferer1 profile image
PMR_sufferer1

My right side has always been worse than the left but it is bilateral. I think being right handed is a factor overall as it's where you feel the pain as that's the side you use most .

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