Other pains returning.

[IdasMum]

Rather depressing after feeling so "well" and energetic over last few weeks to find some of my old pains coming back as I taper my Pred. I am down to 17.5mgs at the moment and none of the bi-lateral pains have returned however having much pain from my arthritic neck. Have had to crack open the French equivalent of Co-Codamol which I am not happy about but it does make a big difference to the pain levels and my head (which feels like someone is gripping it). I am awaiting an appointment with an Osteopath to get some gentle help to ease the tension.

My instructions from my doctor are to carry on tapering until the pain returns and then have the 2nd blood test. It's difficult to not see the neck as pain returning....and I am having to remind myself that at the moment I am "on trial for PMR" so this is their diagnostic route. The temptation to go back up to 18/19mg has been great but in the long run this feels like the right course....and I would have some explaining to do if I haven't reach 15mg by the expected time.

I'd love to have some energy back....so many things I had planned to do...not great in the scheme of things but it felt good to be managing household task with such ease after years of not being able to. Now I am back to each task needing more motivation, effort and taking a little longer.

Oh and one good measure of how well the Preds are working is how I come down the stairs....for about 5 years I have mostly come down one at a time...and on many days now I come down with hardly much thought and how normal people manage stairs!

[PMRpro Ambassador]

Snap on the stairs - that was my immediate "Gosh" 6 hours after taking 15mg! I walked down and then back up with a cup of tea in my hand without thinking about it instead of stomping down one step at a time and crawling back up on hands and knees!

Your neck may be something else - like myofascial pain syndrome which can trap nerves in the shoulder muscles and then referred pain into the neck is the result. Mine improved with visits to a Bowen therapist and an osteopath - the higher doses of pred worked on it but it returned as I reduced. Having a wisdom tooth removed was the final almost cure - it was affecting my bite and wreaking havoc in my back muscles.

[IdasMum in reply to PMRpro]

I thought I'd seen it written here somewhere. What amazes me is it is unconscious....and mostly after the fact do I realise I've done it. Such little things which make such a difference

[PMRpro Ambassador in reply to IdasMum]

Don't they just.

I've just realised that your original question about "what is a flare" didn't get a proper answer.

PMR is just the name we give to the symptoms of an underlying autoimmune disorder that causes our immune system to attack our body tissues as being "foreign". All the pred is doing is managing the resulting inflammation that causes swelling and pain. The activity of that underlying autoimmune part varies, when it is less active you can manage with less pred, when it is more active you need more.

You may reduce too far to a dose of pred that is too little to manage the symptoms being created. Or you may stick at the same dose but the underlying activity increases - the pred needs to be higher. Either is a flare and the most common cause of a flare is accepted even by doctors as reducing too far or too fast. Doing it in too big steps causes something else - steroid withdrawal rheumatism. It is so similar to the original PMR you can't really tell the difference. Though it usually happens the first day of the new lower dose as your body shouts "where's my fix?" and then improves with time whereas a flare takes a few days to start, sometimes even longer, as the inflammation builds up to a noticeable level when the pred isn't enough to wash it out every day, and so gets worse over time.

[IdasMum]

Oh dear.....now I am even more tempted to go back up. Or perhaps I should go and get the 2nd blood test first. The neck is the reason I went back up when we were in the UK for my mums cremation....I put it down to the stress of the lead up to the trip and then events around it that week. I did diminish once I went back up to 20 from 15 which had been too big a step in retrospect.

I think I shall sit it out until Monday (with pain relief) and then go and get the blood test. Once that is done I can increase to 19/20 until Rheumy has given his opinion and perhaps agreed (as most people here do) that I do have PMR.

[PMRpro Ambassador in reply to IdasMum]

If pred helped and reducing the pred brought symptoms back it could well be a piece in the jigsaw - though no guarantees the rheumy will agree!

[IdasMum]

Very happy to report that after an awful day Saturday, Sunday was so much better. I woke up after a good overnight sleep, I woke up relatively pain free and felt 97% normal all day. Today I feel 100% and my neck is just a background niggle.

It seems I often find myself in crisis pain wise and it reaches a crescendo and then subsides. I suspect that after dropping to 17.5 a few days before my adrenals hadn't picked up the slack. I am also aware that I had dropped from 19 on 16/07, then to 18mg 2 days later followed by 17.5 2 days after that! It's maddening when I see what I have done (and interesting that I can see it now, in retrospect!)

So, plans to drop tomorrow to 17mg are on hold and I will stick at 17.5 for another 7 days and then drop another .5mg.

[PMRpro Ambassador in reply to IdasMum]

No - at this stage the adrenals shouldn't be part of the equation. That doesn't apply until below about 8mg which is the equivalent amount of corticosteroid to what the body produces in the form of cortisol. I think it was just your body shouting out that it would like ALL its fix of pred! Mine protests at 1mg at a time - hence the Dead Slow approach.