Started on 15mg pred after an initial melt down in July, now diagnosed as PMR. Split 10mg before bed and 5mg in the morning.
No real problems with that so far but not doing much in the way of physical activity due in part to lockdown and a general sense of lethargy. Still working full time.
Dropped down to 12.5mg about two weeks ago. Split 7.5mg / 5 mg.
No real change apart from a fairly persistent but pretty low level 'problem' with my left shoulder. Fine if i am not doing much but slightly uncomfortable if i lever myself out of bed ,say, and put weight through it. I would give it a 2 out of ten for discomfort so perfectly manageable and not something that i would have even thought about pre-PMR i suspect.
Question.
Do i continue to drop the dosage as suggested by the medics ie to 10mg in about two weeks time or do i wait until i am completely 100% pain free all the time ?
On the basis that i am not entirely pain free now that might incline me to up the dose again which i really don't fancy to be honest, and feeling 100% pain free all the time seems like something of a panacea at this stage of the game anyway ?
Written by
NickWarwick
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Did you have full relief in 15mg? If so, the aim is to find the lowest dose that gives you same relief.
Not everybody is 100% painfree, but as near as you can get to that.
As you’re male, 15mg may not have been quite enough as a starter.
Splitting dose is usually 2/3rd am- 1/3rd pm. Any reason why yours is other way around, and why are you splitting? Drs advice or your choice?
Even though you may not be doing much physical activity, you are working full time which is stressful - and not helpful to your illness - but I know needs must!
15-12.5-10 is a ‘official’ taper according to guidelines, but it is not achievable for all, especially if the initial dose didn’t mop up all the pre-existing inflammation.
So no I wouldn’t reduce until you are sure....it sounds as if 15mg was maybe enough (or just enough) but 12.5mg isn’t - so reducing further will just exacerbate the situation.
I started at 15mg last September and have never felt entirely pain free but it is manageable and I don’t take pain killers, just happy to be 80% or so normal. I take my predsin the morning, followed by a warm bath so although a bit stiff in the morning baths, yoga, walks all help, best wishes
The result you achieved at 15mg is your guide and many people never achieve 100% freedom from pain. As DL says, it is quite likely that 15mg was barely enough for a quick result but by staying on it a bit longer it did enough - I'm assuming you were on it for 6 weeks at least? What you do need to watch for is that you don't feel worse at the end of a taper step than you did at the start of it. And top experts in tapering recommend that no step down should be more than 10% of the current dose. 2.5mg again is well above that. Some people manage it - usually if the dose they need longer term is in low single figures but it is harder the closer you get to that dose, whatever it is. You aren't heading relentlessly to zero - you are looking for the lowest dose that gives the same relief as the starting dose did and that tends to be higher in the early days of PMR than it will be later.
The shoulder problem bothers me a bit because one of the things found in PMR is shoulder bursitis. If the oral dose so far hasn't eradicated that it will probably get worse at a lower dose. The alternatives are to be patient on oral pred or consider a steroid injection to be more targeted about the area treated. Physiotherapy for shoulders in PMR can be a mixed blessing - repetitive activities are poison in PMR so if anyone suggests that be careful. Many physios in the UK often don't know anything about PMR and sometimes it shows!
Thanks for the responses all. It is very reassuring to have access to the combined knowledge here.
To answer your collective questions
I was on 15mg for two months and felt generally ok. Bit tired and the odd twinge if i did too much. No surprises there i suspect.
The split of 10mg / 5mg was my idea. I think it was sparked by a thread on this site. That change in timing helped me a lot in as much as i was waking up feeling a bit grotty during the early stages of this and didn't really get going until lunchtime, post steroids at breakfast. Better to tackle the 4.00 am pain beforehand i felt.
I have seen a rheumy twice. She was perfectly friendly and seemingly knowledgeable but is clearly following the standard taper text. No revisit is particularly planned or booked. I haven't seen a GP (because they wont do face to face consults at all at the moment) but have spoken to them at intervals to organise prescriptions. No consistency in terms of individuals there as you have to ring in and take your chances as to who rings you back. I have no particular complaints about them but i don't sense they are leading authorities on this subject. They seem happy for me to set my own targets going forwards.
I don't want to over play the current shoulder issue. Feels more like a muscle pull than anything else ie the large outer muscle at the top of my arm, as opposed to in the joint itself. Perfectly manageable, although it has stuffed my golf swing.
If i feel much the same now in another two weeks time i will probably take my chances on a drop to 10mg and see what happens perhaps.
But i am then sensing a very slow taper off from 10 down is the way to go, based on what i have read on this site.
"Feels more like a muscle pull than anything else ie the large outer muscle at the top of my arm, as opposed to in the joint itself. "
That is pretty typical of PMR - which is a shoulder girdle and surrounding soft tissue problem, not a joint one.
If your GP is helpful I would ask for 1mg tablets and head for 10mg not more than 1mg at a time. Big steps down tend to lead to you missing the dose you want now and ending up with a flare - and it doesn't take long to negate the perceived benefit of rushing at the reduction.
That's what I did and had a flare up and was put back up to 20 and had to start all over again tapering. I am now on 10 again after a slower taper routine. I will taper slowly this time. At present I am pain free so ready to taper.
That is probably because they aren't a commonly used denomination. Enteric coated come in 5mg red pills and 2.5mg brown pills as standard. Plain pred (usually white but occasionally yellow) come in 5mg and 1mg as the usual offer and are kept in stock by most pharmacies. The 2.5mg plain ones are relatively rarely used so are more expensive compared to 5mg and have to be got in from the supplier - not all of whom will bother carrying them.
Well at the moment i am trying to cut the tiny white pills in half. Which is far from an exact science ! The GP suggested I took 5mg one day and none the next. Which seemed like a pretty poor idea to me.
Pharmacies sell pill cutters - not difficult to use for even quite small tablets as they are held in position by jaws while you press the blade down.
Alternate day dosing is not recommended for PMR - and absolutely not for GCA - as for most people the antiinflammatory effect doesn't last long enough - it can be anything from 12 to 36 hours and then symptoms start to reappear. Many people find that they have pain again late evening and that is the reason we talk about splitting the dose for the patients who have that problem.
1mg tablets are common - just the GP has to provide a script, you can't just ask for some 5mg packs to be substituted with 1mg. Now that would be much simpler ...
You'll be able to tell if they are plain or enteric coated because it will say "gastro-resistant" on the box of coated tablets and they will be coloured, rather than white.
I had bursitis in both shoulders as a symptom of PMR flares, so be mindful of that before you reduce your dose. I would wait until I was pain-free, otherwise you could be setting yourself up for yo-yoing the dose and taking more in the end than if you had waited a while. As you have said, it's early days yet for you - slow but sure wins the race!
If you live in Warwick, which I seem to think you said you do, then
I had absolutely no problem getting 1mg tablets at Boots in Leamington.
My experience from five and a half years of PMR, is that you stick to the ten per cent rule going down to ten. Thereafter, I reduced by half mg at a time, with four weeks plus at any single dose. The pill cutter is no problem!
Do watch out whether they are plain or e/c pred - if they have made the common mistake of not knowing the difference you may have to adjust the times you take them. Enteric coated pred takes 4 or 5 hours to get into the system where plain pred take an hour or so.
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