What about painful arms and shoulders?: I started... - PMRGCAuk

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What about painful arms and shoulders?

km5yx7
km5yx7

I started with 20 mg Prednison 3 month ago, down to split dose of 12mg.

Now I have bad pains in my arms and shoulders at night and early morning again.

Should I go back to 20mg and start over? It seems just adding 1mg or 2mg does not help. Or should I just take a smaller does in the morning and a bigger one in the evening? Maybe 8 mg in the evening and 4 mg in the morning? I would like to stay with 12 mg, but it is very painful. I do exercise and feel ok during the day, but not quite as good as in the beginning when I started on Prednison.

18 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

Would say you’ve reduced a bit too quickly and therefore gone passed the level you actually need.

At 3 months in, 15mg would be more like the dose you should be on looking at most on here, and looking at previous post you have been down to 10mg - much too quick!

You could try a week at 15mg and see if it helps. If it does - stay on it for a few weeks and then reduce 1mg a time on roughly monthly basis.

Can I ask why you’ve have split your dose - was it because you never got a full day’s relief, or some other reason?

Maybe you are trying to do too much exercise as well - your muscles are not as resilient are previously - try easing off that as well for a week or so.

You have a serious underlying illness, you need to manage it, not think just because you are on medication it’s okay.

Have a look at this, if you haven’t already - apologies if I’ve referred you to it before -

healthunlocked.com/pmrgcauk...

km5yx7
km5yx7 in reply to DorsetLady

My first day of taking prednison after diagnosis was pain free, next day right back to all the same pain. Dr. recommended to split dose and since then I have done so.

I do sleep better than ever, but lately wake up at night because of the pain when I move.

What could happen if I now take a full dose once a day? 15mg in the morning maybe.

I am willing to try and experiment, since it hurts already anyway.

jinasc
jinasc in reply to km5yx7

If you can take the dose as late as possible, around 2am is best.........the reason is that this is the time your adrenal glands would be working to get the level up to speed for the next day..............if that is not possible, take it when you wake up with a cuppa and a slice of bread..........swallow and the lie there for about an hour...........them a warm shower and see if all that feels better.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to km5yx7

Hi,

Sometimes it is a matter of trial and error -what suits one doesn’t suit another!

However, I am a bit concerned that you never really had a good result from the initial dose.

Just as a matter of interest how long did you stay at the initial dose? Perhaps you weren’t on it long enough to get the accumulated inflammation pre diagnosis under control. That can take some time - and it needs to be done because even though you are on medication it doesn't actually stop the daily production - it just dampens it down so if the original isn’t under control you’re adding to it every day.

“..since it hurts already anyway” - that’s not how it should be! You do need a better response from the medication and your medical team.

km5yx7
km5yx7 in reply to DorsetLady

the initial dose was of 20mg was for 3 weeks and then down to 15 for 2 weeks,

12 after that.

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to km5yx7

I know 3 weeks is common time period, but really 4 is better-6 better still!

Then 4 weeks at each dose - 17.5 - 15mg - 12.5mg - a recognised taper, but as we all know not always achievable.

Very often patients find they can’t reduce more than 1mg a time.

It might seem a slow way- but if it stops a flare and means you can reduce without pain - it’s not! The worse thing is flaring and yo-yoing - it’s not good for your illness or you!

PMRpro
PMRproAmbassador in reply to km5yx7

Far far far too fast. At least a month at the starting dose, reduce by 2.5mg and 3-4 weeks there, then 15mg and alays a month at each dose. 2,5mg is more than enough at these levels and 10%, which is the basic rule, if down to 1.5mg by then.

Baileyw06
Baileyw06 in reply to km5yx7

I tried splitting at that dose and ended up taking the full dose in the morning . It worked much better!

PMRpro
PMRproAmbassador

After any reduction - however you do it - you shouldn't feel worse than you did at the start. I think to get that far in 3 months suggests you are trying to drop too much at one time and too often and have missed the right dose for YOU and NOW. It doesn't mean you won't get lower, just not yet.

Have you added in any extra activity?

If it were me I would try 15mg - if that works, that's fine and restart your taper but SLOWLY and with SMALL steps. If it doesn't, try a few days of 20mg and then go to 15mg. Let's see what happens.

km5yx7
km5yx7 in reply to PMRpro

thank you, I will do that. Yes, you are right, maybe I overdid a bit of weeding in the garden instead of my usual light exercise or walk.

PMRpro
PMRproAmbassador in reply to km5yx7

Ah yes - ask everyone else about the weeding ;)

Yellowbluebell
YellowbluebellAmbassador

Just as a comparison, I was diagnosed Oct 18 and started on 15mg. I am just about to go to 9.5mg. This taper was recommended by both my gp and rheumy. Its taken me 8 months to get to this stage.

“My first day of taking prednison after diagnosis was pain free, next day right back to all the same pain”

Didn’t go and tie your beanpoles up because you felt so good like I did, did you? I felt GOOD and could raise my arms and those beanpoles needed doing! I learnt the hard way 😉

I started at 50 mgs pred. 7 months ago and reduced to 20mgs in a month. Every reduction I've done from 20 mgs has met with failure because of going too fast so am back up to 20 mgs and with the excellent information on this site have started a taper of 1 mg for about 2 weeks (my goal) and then will try another 1mg down if I feel okay. So far, so good at day number 6 of 19 mgs. I was following a doctor's prescription of reducing 5 mgs at a time from 20 to 0. Not good at all.

PMRpro
PMRproAmbassador in reply to Nanna71

May work when you used it for something else - doesn't work for PMR or GCA!!

Nanna71
Nanna71 in reply to PMRpro

Sorry, which part doesn't work? The reduction from 50 to 20?

PMRpro
PMRproAmbassador in reply to Nanna71

Reducing at a rate of 5mg each time from 20mg to zero. Sorry!

Nanna71
Nanna71 in reply to PMRpro

I am living proof of that fact. Why it took 4 tries - and only from 20 to 15 before big trouble - is also a testament to my ignorance on the subject (sadly, my doctor's too. Although he thought then that I had just RA).😮

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