2 Weeks in

[Rosbud]

2 weeks on 15 mg and still having problems in the morning , waking with aching legs and knees , takes me till late morning to get myself going , is this normal ? GP has left me at 15mg as I'd had some relief and will review me in A month unless I have any problems , any advice would be very welcome x

[DorsetLady PMRGCAuk volunteer]

Hi Rosbud,

I can take a couple of hours for the Pred to start working, so if you are taking it around 8am say, then you probably won't feel the benefit until around 10am.

Unfortunately the substances (cytokines) which act as a trigger to the inflammation that causes your pain are naturally produced by the body around 4am every day so you have a gap of about 6 hours when the inflammation is being caused but not properly controlled.

Some people find their dose of Pred is enough to last 24hours so there is a little still in the body when the daily production occurs, many are in a similar situation to yourself. It may be that you are one of those whose dose does last long enough, or maybe the dose not quite enough.

Another possibility is your original built up inflammation may not be fully controlled yet as you've only been on Pred for 2 weeks. it may take a little longer for everything to settle.

All you can do is monitor it really, but certainly if it worsens then you may need to speak to doctor before the month is out. Hopefully that won't be necessary.

[Rosbud in reply to DorsetLady]

Thank you , am trying to keep A log so can monitor x

[GOOD_GRIEF in reply to DorsetLady]

Something has been bothering me abut this 4AM cytokine release. What is that based on? When you go to sleep? How many hours you are asleep at that time? Your sleep cycles?

[PMRpro Ambassador in reply to GOOD_GRIEF]

Probably your circadian rhythm - your body runs on an about 24 hour cycle mostly governed by daylight and darkness. You can really upset it by working shifts - and it is warned against working changing shifts when on pred. But under normal circumstances the process is associated with the preparation for waking etc etc. Sorry - but don't have time to look it all up just now.

[GOOD_GRIEF in reply to PMRpro]

Thanks, PMRpro. That answer scratches the itch in my brain.

Sometimes I latch onto something and can't let it go until I can grasp the logic.

No need for further research on your part.

[DorsetLady PMRGCAuk volunteer in reply to GOOD_GRIEF]

Can't answer precisely, but as I understand it, that is around the time your body produces that particular substance presumably based on your circadian clock.

Sure PMRpro will be able to explain it much better and may well have a link to give you more info.

[GOOD_GRIEF in reply to DorsetLady]

Thanks, DL. You and PMRpro have given me the answer that puts that particular irritating question to rest.

[Sandy1947 in reply to GOOD_GRIEF]

Because of this, my rheumy told me to take Pred at 5:00 am. While I wait for it to kick in I put a heating pad on my shoulders and once warmed up, do light exercises recommended by my physical therapist. Seems to help.

[edmonton]

Hello Rosbud, everybody is different but my case was this. I started on 20 in March and this removed the agony I'd had in my thighs and groin but the early morning pain and stiffness in my knees, shoulders and arms carried on for some weeks, even had new pains develop in hands. The preds did not kick in till lunchtime either. I reduced from 20 to 12.50 and stuck there for 7 weeks and then I seemed to be coping so much better and realised that the pains were diminishing and I felt almost back to normal. That was in june. So now I'm down to 9 and still ok. I just thought you'd like to know my story and that it does all take some months to settle down even though the initial agony did go quickly thank goodness (i was unable to walk or do anything). All the best.

[Rosbud in reply to edmonton]

Thank you x

[PMRpro Ambassador]

A study showed that 75% of patients got acceptable pain relief within a month with a dose of 12.5mg - so there is still time for things to improve. They also noted that smaller people got faster relief than bigger people at the same dose although normally the dose of pred is not weight related. It might be worth trying 20mg for a few days and see if that helps more - if it doesn't you can drop straight back to 15mg.

I had a miracle in terms of the muscle stiffness and pain with 15mg but it took a few months for the bursitis in my hips and the hand and foot pain to really go.