Consequences of changing the time of the dose, or a personal hurdle?

[Toolmart]

Hi all, I've had PRM for 8 months, none of that time has been pleasant but I seem to have hit a particularly difficult patch recently.

When first diagnosed I was prescribed 20mg. This dose, taken in the morning, wasn't getting me through the night so I split it between morning and evening, this worked for me. So off I set on the steep curve that is learning to live with PMR and the steroids. My tapering from 20 to 12 was uncomfortable but tolerable....but then, when I tried going from 12 to 11 I experienced a severe bout of depression and exhaustion (I've never had depression before). My GP recommended going back up to 12 which I did and the depression immediately lifted. Soon after this I saw my rheumatologist, he thought that it was the accumulation of the steroids that had caused the depression and that I should continue to taper by 1 mg per month. I stayed on 12 for three weeks to let things settle during which time I discovered "the method" , ( a way of tapering very slowly which spreads a 1 mg drop over a period of one month). I am now half way through this very slow drop but have recently been hit by another bout of depression and exhaustion.

I have two questions for the very knowledgable people who contribute, ...is this 12 to 11 point a personal hurdle? ( I understand that a lot of people struggle at the 10 mg mark). If I try and ride out this difficult period I'm hoping things will improve and that the rest of my tapering will be easier, much more of this is a scary thought!

Or could this current crisis be caused by my having messed with the timing and varying the dose of steroids during the day. (I used to split the dose equally between morning and evening but to try and alleviate my insomnia I have slowly brought my evening dose forward to mid day and have been taking 10mg in the morning and 1or 2 mg after lunch). Any help or advice would be very welcome.

[DorsetLady PMRGCAuk volunteer]

Hi Corble,

As you've only had PMR for 8 months, then I would say it is still very active, and that you have probably reached, and maybe gone below, the level of Pred that your body actually needs.

If 20mg didn't give you at least 70% relief (not everybody gets 100%) then either it wasn't enough initially, or your body doesn't get the full benefit of the Pred that others achieve. If you didn't feel comfortable during your tapering that would indicate you have never really got to grips with the inflammation properly.

Many don't really seem to understand that the Pred does not cure the PMR, nothing does, it only controls the inflammation caused by the PMR. The underlying illness can last a good number of years, 2 is usually the minimum, but it can be a lot longer, and it's a serious illness, so all the time you have it you need the right amount of Pred.

As I said the other day Pred is only like a plaster over a broken bone or a sticking plaster on a cut. It stops the original injury from getting any worse, but it doesn't actually mend it. Time mends it - and a bit (or lot) of TLC.

Don't think the change of timings has caused the current problem, but do try and find one that suits you and stick to it.

If you felt better at 12mg, then why not stay at that level for a few weeks, or even months! No point in trying to ride out this period - it will do you no good in the long run, and may actually do you harm. Your tapering sounds good, but you need to get really stable before you try again.

[Toolmart in reply to DorsetLady]

Many thanks Dorset Lady for a speedy and sound reply. Your wise words are much appreciated.

[Lochy]

Hi Corble, I too started at 20mg but back in April 2016. Now tapering to 11mg at moment after losing control of my PMR towards end of last summer and ending up back on starting dose by xmas. Very frustrating and pain all returned. Have adopted much slower reduction regime after following advice here. My GP had me reducing too fast and I was merrily oblivious!

I also started to split my dose ages ago as struggled with night time pain. It worked really well for me although GP and rheumatologist claimed they'd never heard of doing it but were happy if it worked for me. I currently take 6mg at night before bed and 5mg in morning. Now finding mid evening around 8pm I get bit stiff and sore. Might need to try adjusting the timings of my dose. Just feel as if the steroid 'tap' has been turned off! A bit odd but perhaps juggling the timings might help. Don't want to increase the dose as have been feeling pretty good overall!

Good luck but as Dorset Lady so wisely says you may have reached the correct level for the moment. I still struggle so much with the concept that the pred isn't curing the PMR! It certainly is not the way the doctors explain it.

[PMRpro Ambassador]

Blowed if I can see how the rheumy reckons it is the accumulated pred causing the depression - if it were, then going back to a higher dose wouldn't lift it!

But nothing to add to DL's comments.