Sore wrists

[Amilee]

Hi first time writing on here!started on pred 8 weeks ago on 15mg with in 6 hrs of taking first dose about 80-90% of my symptoms were better.I am now tapering from 12.5 down to 11mg but have pain in wrists and shoulders.I have never been completely symptom free from the start with pain in mornings and when sleeping! My question is should I have been on a higher starting dose so I had no symptoms or is it normal to have some pain until pred kicks in.

[123-go]

Hi Amilee. It's my belief that 15mg to begin with was not enough-20mg would have been better. Also, you should definitely not be reducing while you have pain. It's very difficult at the moment to get medical appointments either face to face or on the telephone but you may need to return to your GP/rheumatologist to get a handle on your problem.

[Amilee in reply to 123-go]

Thank you for your reply,I agree I think I have not started high enough!On diagnosis I was in so much pain I had pin everywhere pelvis,thighs,back,shoulders,neck now I only have it in my shoulders arms and wrists and my thumbs!I was more or less pain free about week 4 on 15mg ,as I have come down symptoms are getting worse again.we are in the process of fixing up our house just now so it might be I’m doing to much

[DorsetLady PMRGCAuk volunteer in reply to Amilee]

15mg may have been enough, as you were ‘more or less’ pain free, but the subsequent taper has been much too fast.

Sometimes 4 weeks is enough to get things under control, but I always think 6 weeks is better, then reduce on a monthly basis only if you have no return of symptoms. Not the official line I know, but less likely to cause a flare.

Plus you must remember that your illness is not cured, only part of the issue - the inflammation caused by it is being controlled by the steroids - so you cannot return to normal life.

Have a read of this - but you need to return to a higher dose, and start again I’m sorry to say - healthunlocked.com/pmrgcauk...

As advised, contact doctor and discuss.

[123-go in reply to Amilee]

Ooh! Leave the decorating to someone else! I would guess that you were quite active and independent before PMR like many of us. It's very tempting to overdo things once the pain has reduced and to 'push through' but a mistake. Rest is very important and everyday activity should be increased in small steps. I was like you initially with pain all over and unable to do even the most simple of things..lifting fork to mouth, sitting, standing from seated, showering....and I know the relief when these can be resumed but take it slowly and listen to your body.

Your focus should be on getting your Prednisolone sorted out and reducing the inflammation. Anti inflammatory food will benefit and you'll find lots of tips on the internet as well as from other members here.

I wish you well.

[PMRpro Ambassador]

"as I have come down symptoms are getting worse again.we are in the process of fixing up our house just now so it might be I’m doing to much"

I think that is as much the problem as anything else. If you achieved nearly 90% relief with 15mg there is probably no need for more. But a slower reduction would be better.

I agree with DL that 6 weeks on the starting dose is better before another 6 weeks on 12.5mg. You may never be 100% pain-free but it is much more likely that you will have pain if you ask your body to do too much - and home renovation comes under that! Avoiding or adapting activities that are a problem is essential to live well with PMR. And sometimes you have to change your plans, hard though it may sound.

The pred is only a management strategy - it combats the inflammation and that improves the symptoms. The real underlying autoimmune disorder is still there, continuing in the background and leaving muscles and the soft tissue around the joints intolerant of acute or excessive activity. Sore wrists is a sure sign for me that I'm at too low a dose of pred.

The autoimmune part of PMR leads to a dump of inflammatory substances in the body in the early morning, about 4-4.30am. The antiinflammatory effect lasts 12-36 hours depending on the person and, unless the effect of the previous day's pred dose is still taking effect, that will lead to a return of inflammation and symptoms until you take the new daily dose. The sooner you take the pred after 4am, the sooner it will take effect, less inflammation will have been created so less to mop up. The optimum time is 2am, the pred is present at its maximum level in the blood BEFORE the inflammatory substances turn up for work and they have no chance.

You say night time pain - when? Is it returning as a general thing early in the 24 hour period or is it the new cycle causing it in the early morning? Overnight back pain is sometimes not PMR.

[Amilee in reply to PMRpro]

My physical symptoms generally get better as the day goes on and is fine at bedtime,I waken every night about 4-430 am probably the pred but I am also in pain in both shoulders as I sleep on my side,sometimes I can get back to sleep but a lot of times I’m to sore! I take my pred at 7 am it’s usually midday before I fell ok to do something.just feeling it very difficult as I am/was a very active person ,I have just retired at 55 from being a fireman and been hit by this.

[PMRpro Ambassador in reply to Amilee]

It will get better:

healthunlocked.com/user/Ski...

Read his posts - even if you don't necessarily want to climb Annapurna IV just yet ...

Why not try taking your pred before bed as it seems to last the 24 hours and, like me, you do improve through the day and the evening is good. It may interfere with sleep but a lot of people find it doesn't. Or split the dose with the bulk in the morning and enough later enough to cover the morning pain.

[Amilee in reply to PMRpro]

Thank you for your support and wisdom . I really think I’ve not realised how little I am now able to do!Last week I was feeling good so I desided to put In 4 clothes posts for our drying green which involved digging and mixing cement and using a wheelbarrow since then I have gotten this sore wrists and shoulders is this far to much at this stage and am I now paying the price!

[PMRpro Ambassador in reply to Amilee]

Um - ONE post would have finished me ever, never mind 4 with PMR! Often you can continue doing things but you have to pace doing it - digging the holes one at a time with a good break between etc.

The pred has cured nothing - the autoimmune part is still active, just the inflammation it creates is mopped up by the pred so it is less painful. But the effect on the soft tissues around the joints continues, leaving them intolerant of acute exercise. In some ways it is like ongoing RSI - and if you want that to improve you avoid the activity that caused it.