Upping my dose?

[Jigsawlass]

I have been tapering very smoothly , 1mg a month and was on 6mg . I went to 5mg , had the adjustment aches and pains of getting used to the lower dose but they have not gone away and Paracetamol doesn't help . I have woken in the night a couple of times too in pain. So I am back on 6 but should I increase further ? I wonder whether 6mg was only just enough to keep inflammation at bay . Advice gratefully received 😀.

[PMRpro Ambassador]

Is the 6mg clearing out the symptoms? The usual advice for managing a flare caused by overshooting the dose is to add 5mg to the dose where you flared for a week to 10 days and then drop straight back to the last dose where you were OK, in your case 6mg. Sort of a spring clean before going back to dusting ...

That is exactly what you are hoping for - the lowest effective dose, the dose that works as well as the starting dose but only just. I;d suggest that from here on you only do 1/2mg at a time or use one of the slowed tapers we go on about, if you aren't already doing so. My mantra: the lower the slower!

[Jigsawlass in reply to PMRpro]

Thanks, not clearing the symptoms completely no. So I will up to 10mg for a week as you suggest and then drop down again . I've got pain in unusual places this time , like my feet and across my toes ! Tinnitus has appeared too , which is annoying 🙄

[PMRpro Ambassador in reply to Jigsawlass]

You haven't used NSAIDs as painkillers have you?

[Jigsawlass in reply to PMRpro]

No, stuck to paracetamol.

[PMRpro Ambassador in reply to Jigsawlass]

Apparently it too can cause tinnitus with long use - didn't know that!

It may be you had some ear damage with the PMR but it was masked by pred at higher doses

[Jigsawlass in reply to PMRpro]

I think a side effect of steroids can be tinnitus too. Although it could just be bad timing too....23 years as a music teacher !

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

In that case follow advice in this post re flaring...

healthunlocked.com/pmrgcauk...

and once back on track try reducing by 0.5mg a time and maybe introduce a slower tapering plan - coupe here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Jigsawlass in reply to DorsetLady]

Yes, I think time to go down by 0.5mg but once I have got this flare under control I won't start to taper until the New Year I think

[DorsetLady PMRGCAuk volunteer in reply to Jigsawlass]

No, definitely no tapering until 2023 !

[piglette]

Dropping 1mg at that dose is quite a percentage drop. Fifteen per cent! I would definitely try and drop by smaller amounts in the future.

Increase by 5mg for a week to hit the PMR on the head and then drop back to the last dose where you were comfortable.

[MiniSpec]

Regarding tinnitus. I've had it since two days after I started on Pred. That was 12 years ago, and as I sit here writing this I still have those jet engines whining away in both ears. My fervent hope is that if one day I manage to get off Pred altogether, then the tinnitus will fade away as well, but for the moment that's just a pipe dream.

As to the pain you get, I also found that paracetomol on its own does nothing. So I now get hold of Solpadeine Max soluble tablets and take one if the pain around my pelvis gets too much. I don't know of any other tablets that have as much codeine in them as the 'Max' tablets have, but they've got 12.8mg of codeine per tablet, and that seems to turn the pain into a memory in very short order (around 15 minutes!). Furthermore, despite warnings that taking them for more than 3 days can be addctive, I've more or less lived on them for as long as they've been available (about 11 years I think) yet I now only take one if the pain gets too much to bear which recently has been less than once a week.

I remember reading that a fairly comprehensive study a few years ago discovered that those who take codeine for headaches can quickly become addicted to it, but those who take it for back pain rarely do. I take the 'Max' tablets for back pain, and if I don't need them I don't take them, so I guess I'm not yet addicted.

Regarding the pain in your feet. I had something similar for a couple years about 6 years ago. I suddenly found that the soles of my feet became painful to walk on. In the end I found some very comfortable trainer type shoes (in my case it was Skechers) that had very well cushioned and springy soles. These more or less did the trick, so that although my feet still hurt, I was able to walk almost normally. After around two years the foot pain faded away on its own, and soon after that I retired, so I didn't have to do the daily commute any longer. Since then I haven't had any further problems with my feet, but am now suffering with pain in my knees instead! Doh!

[Jigsawlass in reply to MiniSpec]

Thanks for your reply , interesting to read your comments about codeine. I'm hoping stepping up my dose of steroids will do the trick . Re the pain in my feet, I have had collapsed arches for years so wear shoes by Strive which are amazing and have great arch support . This is across the top of my feet , near my toes , most odd !