Should I increase more....

[kalimche]

Hi good people, diagnosed Oct 2019, started Pred at 15 mg, slowly slowly tapering down to my final week of 5 week taper from 3.5 to 3 mg a day. But then I had a bad couple of days with my knees really hurting - I suffered with arthritis in them pre PMR and I believe the steroids masked the pain at the higher doses. The pain was bad - especially lying down in bed at night - and really hurt to roll over and very difficult to roll to get out of bed in the morning....

(which reminded me of pre Pred days - the agony of getting out of bed - but then the pain was in my shoulders and neck and upper body, my hips, legs and knees were never involved.)

And then a few days later -my neck really began to hurt. Again my neck has "clicked" for ages and I suspect spondylosis, and generally always hurts a bit. I began to take cocodamol - but got no relief. Meanwhile, my knees are back to normal, and it no longer hurts to roll over to get out of bed. But the pain in my neck has now spread down to top of my shoulders and front - and it hurts to raise my arms. Warning bells now!

So Saturday morning, I decided to increase my Pred by 5 from 3 to 8 mg. Some slight improvement - moving hurts most of the day, and in fact by the time I am going to bed it is better, but bad again waking up in the morning. Still, not as bad as it had been before I went up to 8mg.

My question is.... should I increase the dose so that I can get rid of this shoulder pain completely? Maybe go up to 10 or something and see if it clears? Or stick here at 8 a bit longer and see if it clears? I would prefer to do something like drop down to 5 mg and stick there for a while - but whilst it still hurts most of the day, I don't suppose that makes much sense. So any advice would be much appreciated.

Oh and I can't consult the Dr. I've been trying that for a few weeks cos I thought it was time I had some blood tests and maybe a cortisol test done - last bloods were taken a year ago - but I was told (by automated system) that there were "no appointments available" - not with my preferred Dr, or any female Dr or indeed any male Dr!!

My husband has not been too well for the past couple of weeks.... so go figure, I imagine maybe stress might be behind some of this.

But I am pretty fed up cos just a year ago I was asking the same sort of question when I had ligament damage and went up from 5 to 10 mg for a while to try and help the pain. So I don't seem to have progressed that far (5 down to 3!) in a year! Fortunately I have never suffered from fatigue and am back at the gym 3 times a week - doing very gentle exercises!

[PMRpro Ambassador]

I think you have probably slightly overshot - and you may well be fine on lower than you were on a year ago if you don't push the reduction as low again. But you are NOT reducing relentlessly to zero, you are looking for the lowest effective dose - which is somewhere around 4 to 5mg. It is low enough to be relatively safe and doctors shouldn't be pushing you lower if it doesn't work.

As for not being able to speak to a doctor - try going via the practice manager. It isn't acceptable for them to deny you care like that.

[TheMoaningViolet]

Hi kalimche, I have only reduced from 5.5mg to 3mg in a year and I consider this to be a success since I feel fine and I had no flares. These are low doses and as long as I am making progress I will not worry about it. It can be difficult to know whether PMR is behind any new pain you may be feeling. I find that every time I have some, I observe it for a while looking for clues. Perhaps I had a small injury, perhaps I walked too much, perhaps I should do more gentle exercise. I do this habitually, just as I look for signs of GCA or any menopausal symptoms which could be confusing the picture in my case, it could be tempting to blame everything on PMR.

It sounds to me that you are doing quite well and are quite thoughtful and sensible about self-care.

I hope the neck pain improves, I had a minor injury a couple of months ago (which slowed down my taper, but I didn't increase the dose) which took 5 weeks to get better.

[kalimche]

thank you both for your replies. I did think I had been taking it all very slowly - after all it was exactly 3 months ago when I started a slow taper from 4 to 3.5! But I think you must be right - and this is the proof! And I cannot think of anything I might have done to bring it on - such as gardening etc- cos that has been the case in the past (other than the poss stress I mentioned).

Neck / shoulder slowly improving - but still much the same! I think I am tempted to whack it up to 10 mg tomorrow and give it a real "blast" - and then back down to 8 mg for a couple of more days, then I suppose I will try dropping down over a month or so to 5 and then stick there for a while before beginning to taper down again. Also I will look up a slower taper - I had been doing DL's 5 week taper. All of course provided the current pain subsides. Obviously the pain is nothing like as bad as it was in the original days.... but I was concerned cos it was reminiscent of the same!

[PMRpro Ambassador in reply to kalimche]

And given time would probably get back to being the same!

[Thelmarina]

Is there any other way of contacting your practice? Website? At least then you could describe your problem. Hopefully appointments will be available next time you check in. Maybe you need to change your practice - sounds irresponsible to me!