Advice on tapering please

When did you start to feel the discomfort again?  Was it at 4 mg?

The 'flare' started after I had tapered from 7mg to 6mg to 5mg to 4.5mg to 4mg on 4-6 weeks increments. At 4mg I started feeling lousey and realized that 4-6 week increments was a bit too quick and I went back up to 5mg and stayed there for 3 months and I felt OK.

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

Remember though, it isn't just that - maybe - the decrements were too quick - 4.5mg MAY be the right dose for your PMR at the moment, 4mg may simply be too low. Half a mg can make a big difference - it isn't just the speed at which you reduce the dose being too much for your adrenal glands to keep up.

So - do you mean that because I had a flare at 4mg before, it is likely that when I drop to 4mg again from 4.5mg that my adrenal glands may NEVER accept 4mg and flare again - or do you think that three months at 4.5mg will allow the adrenal to become more acceptant of 4mg being normal ? And then if I give it 3.5mg after three months at 4mg - etc...

Despite a lot of reading, how the adreanl glands work is not easy to understand !

Are you using the dead slow method, so that instead of dropping .5 mg and staying there, you drop .5, for one day return to original dose for a few days, drop .5 again, wait a few (but fewer) days, until eventually you are on the new dose every day?  I'm not nearly as low as you, but this method got me successfully to 9 from 10 and seems so far to be working to get me to 8.  My original attempt to drop directly to 9 had been unsuccessful.

No - I haven't tried that approach - I've only done the 'drop' and stayed there. It does sound like a good idea - maybe Eileen will comment further on this when she replys to my last message.

Dave

It isn't necessarily anything to do with your adrenal glands and whether they are working well or not - 4.5mg may be the amount you need to manage the inflammation caused by the autoimmune disorder that causes PMR symptoms. The reduction isn't heading relentlessly for zero, it is looking for the lowest dose that manages the symptoms well AT THE MOMENT. It doesn't mean for ever - it means the autoimmune disorder is still active enough to cause symptoms. You can't not try to reduce -otherwise you will stay in the same place forever. But if you develop a flare, it makes sense to wait a few months before trying again, let everything settle down properly.

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.

I note what you have said in previous posts and I am uncertain about whether I am at the correct level. I am experiencing some discomfort in my legs which I had before diagnosis and which cleared when I started steroids. It is almost akin to cramp. It has recently returned and I realise it may be due to the extra work with family staying. I am prepared to wait and see as life will be less hectic for the foreseeable future. Some of the pain which also returned recently has abated slightly as I have rested a bit more. When I reduce from the 11mg which I am now at do I go straight to 10 and then do the dead slow approach? How long should I stay at 10? I do not want to get stuck nor do I wish to have a flare. I remember you said to clear the decks when reducing which has worked for me. Thank you in anticipation. I am sure you must get weary at times with the same questions, Eileen. I am in awe at how well you manage to keep it all going especially with your own family commitments.

My mantra is that you should be aiming to find the lowest dose that gives you the same result as the starting dose. However - there are bits that happen alongside PMR that produce symptoms that are confusing and it sounds as if you may be suffering some of them. 

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.

Thank you for your advice, Eileen. That makes sense and describes it well. I shall check out Bowen in this area as I know there are some. I would say don't give up yet on your husband but I started the domestication when we were on a family camping holiday. I suddenly realised this was my holiday too so I taught my husband to do the laundry. The other women in the laundry were very impressed until I said this was a new experience for me as well as my husband! My mother-in-law often went on about how lucky I was that her son was so good. I quickly pointed out that I too worked  full time and longer hours plus a commute unlike her son!! 😳😳She only ever worked very part time when her family were older. I have recently managed to get my husband to cook by following a recipe. I told him it wasn't rocket science. Have you tried going on strike? 😀I guess it may not have the desired effect at this stage.

On strike? He'd just go to the restaurants in the village - Wienerschnitzel and chips every night. Maybe the occasional pizza. That's what he did when I was in hospital for 3 weeks! 

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"!

Oh, Eileen, I have tears running down my cheeks from laughing. Yes, that's exactly what my husband would have done though I think the meals for one from a very nice supermarket would get a lot of business. There is a lovely French restaurant which we patronise and I think it's business would increase. The cooking has almost ground to a halt so that'll be it for another 40 + years but I have in the past threatened to come back and haunt him!!🔙🔜😀😀