On 20 mil of pred should the symptomsCompletely disappear

[DJmusic]

I have now been on Pred 20mg for about 4 week And the symptoms are greatly reduced I’m able to do most of my work but I’m very stiff in the shoulders knees and one ankle in the morning This eases off as the day goes on but I’m not sure whether all the symptoms should have gone away my doctor tells me that my inflammation markers are still up and I should carry on for another two or three weeks and see where we are by then any thoughts anybody

[paulst955]

PMR normally affects the neck shoulders and hips and sometimes hands as well not knees and ankles. Don't think about reducing your pred tablets until your neck shoulders and hips are moving without pain then let them settle then reduce slowly fast reducing will only cause you flares and more pain. Benn there done that pointless, its a long journey be very patient.

[Koalajane in reply to paulst955]

It has affected my knees and ankles

[tangocharlie in reply to Koalajane]

I saw a PET CT scan picture of inflammation caused by PMR and it included knees which surprised me as I'd never heard of that. I guess every case and body is different

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

never seen this before?

overlap

[tangocharlie in reply to DorsetLady]

I think I have, is it the Dejaco one? but I didn't spot the knees

[PMRpro Ambassador in reply to tangocharlie]

Or are you thinking of Claire Owen's paper?

jrheum.org/content/jrheum/4...

Haven't checked just now but I'm sure she mentions knees.

[DorsetLady PMRGCAuk volunteer in reply to tangocharlie]

Yes it is …:😊

[Broseley in reply to paulst955]

My knees were the worst affected part of me.

[Flivoless in reply to paulst955]

Along with shoulders and hips it also got me at the top of the calf sort of behind the knee.

[herdysheep in reply to paulst955]

Certainly affected my knees.

[AyJayBass in reply to herdysheep]

Knees - me too! Very stiff and limited bend until the Pred was started. Putting socks on was very hard.

[DorsetLady PMRGCAuk volunteer]

One would hope at 20mg for 4 weeks you would be feeling a bit better - do you know what your inflammation readings are? GP saying they are high is a bit vague, they could be marginally up, or significantly up.

You may be one of those people that does require more than others, and as you are a farmer you are obvious not able to rest up for a few days and see if that helps the situation.

Do as GP suggests and give it another couple of weeks to see if things improve. If not, you might need to consider upping to 22.5 or 25mg.

Imagine you wake up early and take tablets then, but unfortunately don’t have the luxury of having another hour in bed allowing them to work before you start work.

Although it would be preferable for you to be able to get things under control first, it may be worth considering splitting dose.

Usual is approximately 2/3rd am, 1/3rd bedtime…….that may give you relief when you wake up. That would be 14/6mg…..but might be easier to go for 15/5mg split at moment.

Couple of options to consider and discuss with GP…..but fingers crossed another 2 weeks at 20mg will get it sorted.

[SnazzyD]

Hello, are you trying to go about your normal day’s work?

[PMRpro Ambassador]

The usually quoted criterion is a 70% improvement in a reasonably short time - it may be better at a higher dose or after about a month but some people are never entirely free of pain. But if your markers are still raised it is a good idea to continue at your starting dose for a bit longer and try to get them down to as low as possible.

For some people the antiinflammatory effect of pred doesn't last the full 24 hours - it varies from 12 to 36 hours depending on the person. A new batch of the inflammatory substances is shed in the body every morning about 4-4.30am so if the previous day's pred dose has run out of steam you will have more symptoms early doors until the new daily dose kicks in.

If that is the case then splitting the dose as DL suggests may help if you can't manage to take it really early - often people find they are not stiff or in pain before 4am but by 6am they are all too aware of it. 2am is the optimum time to take plain uncoated pred to minimise morning symptoms - but maybe not ideal if you have to get up early to do a day's work. Splitting the dose to extend the period the pred is active for can achieve a similar result.

And of course - lifestyle changes and adjustment of activity is crucial - just saying, because i do appreciate how difficult that is.

[Charlie1boy]

Hi,I was started on 20mg, then moved up on the advice of my GP to 30mg because the pain was still there. I stayed at 30mg for just over three weeks before reducing slowly. As DorsetLady says, some people just need a higher dose to start with to get the accumulated inflammation under control.

Also, if possible, you do need to try to do a bit less physically, although I do understand this may be difficult for you.

I’m not saying that what worked for me would work for you, as pmr manifests itself differently for all of us. Just saying what my experience was.

Good luck

Paddy

[Spindoctor]

Hi sorry to hear you are still having symptoms.

I was diagnosed in December 21 and started on 15mg and had the initial boost after 7 days, then dipped with increased lethargy and shoulder and hip pain inflammatory markers still up after 3 weeks ESR at 57.

Increased to 20mg then to 30mg after further bloods show ESR up at 37 now on 30mg for 10 days and feeling much better - as you can see we all respond to differing doses and its finding the right balance that's important.

Accepting that its going to be a long and at times bumpy road ahead is difficult for me.

[tangocharlie]

I had to go up to 40 after a major relapse just over a year ago to get things under control, even 25 didn't work for me, so you may just need a higher dose to begin with, ask your doctor if it's worth trying?

[Twopies]

I started on 20 mg too; my markers went down to almost nothing right away, but I too still had pain. After 2 months Rheumy said, “you’ve got a bad case!” Indeed. I’m never pain free, regardless of dose.

[DorsetLady PMRGCAuk volunteer in reply to Twopies]

“You’ve got a bad case”…. In other words I don’t know what to do…you aren’t conforming to the text book! Very helpful 🤦🏻‍♀️

[LBM1953]

Hi. I started on 15 mg no effect. 20mg eased the pain but not completely and only for 3 quarters of the day. 25 mg and bingo. Still some minor shoulder discomfort but not significant. GP then prescribed 30 mg to try and get rid of that as well but no difference. My CRP was over a hundred so I guess I was one of those who needed a higher dose.

[whitefishbay]

When I went on 20 mg I felt like I was walking on air. I hadn't moved so fast and effortlessly in months. Now at 1 mg I realise some of the aches and pains are down to OA. All I can say is you have to keep moving.

[SheffieldJane]

Some people start on 25 mgs before they get on top of the inflammation. My symptoms all went within 48 hours of taking 20 mgs. Most people can hope for a quick result of at least 70% reduction in symptoms within days, on the right dose.