Lowering pred aches

[pastamaid]

So, been on pred for last three weeks and went down from 15mg to 12.5 after 3.5 weeks. That was 3 days ago. I take my pred at around 7.30 in the morning. For about the next 3 hours i have slight ache, not a problem as only slight, no stiffness as before Pred, then it seems to kick in and apart from when i overdo it a bit, trying to carry heavy shopping bag etc, I am ache free for the rest of the day and night.

Is this normal, or is it telling me that I have cut too early? I have the coloured tablets. I have read that some people take them earlier in the morning, so dont know if taking it at the wrong time.

Thanks for any info

[SnazzyD]

Sounds like there isn’t enough Pred in the system until it is fully absorbed about 2-3 hours later when it gets to work again. I’d say you might be on the cusp of not enough Pred so go easy on those reductions. It isn’t unusual to be on 15mg for 4-6 weeks to properly clear out the initial inflammation so you might be jumping the gun a bit. If this phenomenon stops after a week you could put it down to withdrawal but give this reduction time to show its true colours such as a minimum of 2 weeks.

[pastamaid in reply to SnazzyD]

Intend to be on this one for at least 3 weeks. Got over the mindset of get off pred asap, now being realistic after reading all the guidance from the lovely people on here

[Charlie1boy in reply to pastamaid]

One of the recommendations for tapering is not to reduce by more than 10% of your current dose, so, if your plan was to go from 12.5 to 10 mg next time, then I would be thinking of two steps for this procedure. 2.5 off 15 is more than 10%, though only by a little bit.

Also, I never tried to taper if I felt any pain at all. I agree with SnazzyD in that you are right on the cusp of having enough pred.

[DorsetLady PMRGCAuk volunteer]

Were you totally okay on 15mg? … in my view you need at least 4 weeks, but as SnazzyD has said 5-6 weeks is much better, but many doctors don’t seem to like that idea nowadays.

Again, it could just be steroid withdrawal at day 3 on new dose… and it may go away. But if you still have it after 6-7 days, I’d be inclined to go back to 15mg for another couple of weeks.

I know the guidelines state 15mg-12.5mg -10mg - but it’s not achievable for everyone - so I’d also be asking for 1mg tablets…you’ll need them shortly anyway.

Main thing is to get PMR fully under control, so early days concentrate on that… with slightly more Pred if required.

We do sometimes suggest taking at a different time, but that for Pred to be in system for the morning shed of cytokines and an easier start to the day.…. but in my personal opinion [and it is only that] get PMR under control with the correct dose first and foremost. Tinkering with times to make the day easier for you can come later.

[pastamaid in reply to DorsetLady]

Thank you, will stick to 12.5 and see if it gets better. If not will go back to 15mg. Will not decrease until i'm sure aches are under control and i am doing it right. As I said, real learning curve, went from thinking, they may say its a slow taper, but i will be OK quicker and having read all the info on here, realise that I was an idiot and gave myself a good talking to. Back on track now, with the right mindset, thanks to all on here

[PMRpro Ambassador]

The main problem with enteric coated pred (the red and brown coloured ones) is that they take 4 or 5 hours to fully get into the system and start working. If you are a person where the antiinflammatory effect of pred doesn;t last the full 24 hours you will feel some aching until the new dose of pred is into the system and acting. Personally I think starting to taper after 3 weeks is far too soon because unless all the accumulated inflammation has been cleared out you have no leeway and aches may be the result.

[pastamaid in reply to PMRpro]

Thank you lovely people

[piglette]

My rheumatologist got me to reduce after three weeks which I think was too soon, I should have waited at least four weeks. You can get steroid withdrawal on reducing which can last a couple of days or so.

[PMRCanada]

You might consider taking your enteric coated pred at bedtime (say 10pm). That way the dose will be onboard by around 2am, the preferred time prior to when the cytokines are released.

Splitting you dose is another option you can discuss with your doctor to provide a full 24 hours of relief and reduce morning aches/stiffness. I ended up doing this because my daily single dose did not provide a full 24 hours of relief.

I had to drop by .5mg starting at 12.5mg pred (12.5, 12, 11.5, 11, etc) after a flare occurred when I dropped from 12.5 down to 10mg. Despite having the same condition, each of us may taper at a different rate (although common tapering schedules are tried). Listening to your body/symptoms is key. Sometimes bloodwork results align with symptoms, sometimes they don’t (or they lag behind).

Tapering is not always as straightforward as the medical profession may think/say. Distinguishing between pred withdrawal symptoms and the beginnings of a flare (and later, adrenal symptoms), can be a challenge too, but you have found this forum which is a very helpful resource.

All the best on your journey!