Advice on tapering please
Posted , 7 users are following.
I've had PMR for nearly two and managed to get down 3mg one day and 4mg the next. I allow 4 week intervals before going to the next stage which will be 3mg every day, but I'm really worried about going this low especially this time of year when I suffer from sciatica and painful feet.
Am I worrying unneccesarly and should just get on with it, or perhaps have longer stages before I reduce?
I realy appricate you thoughts.
1 like, 14 replies
Dave-California angelcake61
Posted
Like you I think that I have been doing quite well with the slow taper. I reduced very slowly down to 4 mg but I got a slight ‘all over’ pain/ache increase and major hand pain, So I did a 1.0mg prednisone increase to get back up to the level where things seem to be working well and I stayed there for 2-3 months. It did stabilize and I just tapered by 0.5mg to 4.5mg and again continued for 3 months at that dose where is where I am at the moment - still feeling not too bad. So I will taper another 0.5mg in a week or so and stay at 4.0mg for 2-3 months.
Slow is the only way !
Dave
Anhaga Dave-California
Posted
Dave-California Anhaga
Posted
Like I mentioned, I've now tapered to 4.5mg for 3 months and am still OK - so will taper to 4mg soon and staye there for at least three months.
Dave
EileenH Dave-California
Posted
Dave-California EileenH
Posted
Despite a lot of reading, how the adreanl glands work is not easy to understand !
Anhaga Dave-California
Posted
Dave-California Anhaga
Posted
Dave
EileenH Dave-California
Posted
The fact you are well at 4.5mg suggests your adrenals are working well thus far. They aren't "flaring" - it is the PMR that is flaring.
And of course I'd say using the "Dead slow" approach has advantages where any reduction is such a relatively high percentage of your current dose. But if you are at your "maintenance dose", for want of a better word, even it won't get you much lower either.
Silver49 EileenH
Posted
EileenH Silver49
Posted
First of all - there is no reason why you can't use the "Dead slow..." approach from any dose - originally we were suggesting it for getting below 5mg, then we realised that some people struggled below 10mg - and then it became obvious that there was absolutely no reason why you can't spread those drops over a few weeks at any stage and in fact it isn't any slower if you just use it a rolling reduction.
Second: there is something called myofascial pain syndrome which is also caused by the same cytokines that cause PMR. The difference is that in PMR it is systemic, all over the body. In MPS the cytokines are concentrated in trigger points, knots of muscle fibres in pairs on either side of the spine in shoulders, at rib level and lower back. The ones in the lower back can pinch the sciatic nerve and lead to cramps and discomfort, especially when you walk or stand for long. There are various ways of dealing with it, if you are lucky a GP/rheumy may offer cortisone injections but that is often a vain hope. I managed it for 5 years with visits to my osteopath and combining that with sessions of Bowen therapy - and I suspect that Bowen alone is enough for most people.
I was told by an orthopod that I had wear and tear in my lower back and would have to learn to live with the pain which appeared after a quarter of an hour walking and simply made me feel sick. In fact it was entirely due to muscular problems that had led to my back muscles resembling the floor boards! I had a combo of therapies from the pain clinic (cortisone injections into the muscles), physio (manual mobilisation of the trigger points - and Bowen therapy. Now I use the Bowen to keep it under control. You will know in 3 sessions - maybe sooner - if it is going to help. You may not be finished after 3 sessions - but if there is no change at all there is little point continuing. The changes may be subtle at first - but there are several people on each of the forums who have gained great benefit from it and been able to reduce the oral dose of pred afterwards. It really is worth a try.
My own family is in Scotland and the north of England - I live in northern Italy so there aren't too many demands on my time. Just a husband who is totally undomesticated (I've given up trying after over 40 years!) and the odd bit of editing work.
Silver49 EileenH
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EileenH Silver49
Posted
When David was writing up his PhD my MIL actually told me off for not standing waiting at the door with the paper and his slippers when he came home! On the grounds he'd been at work all week. So what did she think I'd done Mon-Fri? And I had spent the weekend doing everything else alone. Washing machines didn't run themselves in those days.
We camp - but I have always tried to make sure there was a minimum of washing until I got home! I have stood at the end of a phone visualising how to use the washing machine to tell him which button to press because he'd run out of shirts when I was away.
Following a recipe? Heavens, that would be beyond him but he can manage frozen chips and can put a steak pie in the oven or grill bacon (he likes it half raw anyway) - but that doesn't apply here, almost nothing that you could describe as "oven-ready"!
Silver49 EileenH
Posted
EileenH angelcake61
Posted
There has been a bit of discussion on the 3 forums recently about the effect of the colder weather - and the conclusion seems to be it DOES make a difference and maybe a bit more pred helps so don't reduce even if you are "due".
This is such a low dose now, the side effects are minimal and even doctors don't panic! Plus, you are at the level when each drop means your body has to catch up with producing cortisol. Going slow has to be a good thing.
I assume you've read the replies section of this?
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316