Tapering too quickly

[Lclmlbls]

I realise I’ve been tapering too quickly. I followed all the excellent advice tapering at higher levels and had very little trouble. Why then, you may ask, did I even try rushing it knowing full well the likely outcome?

I was taking 8mg and started tapering to 7.5mg on 1 March, then to 7mg on 24 March, then to 6.5mg on 2 April. I felt really well on 8mg. Should I go back to 7.5 for a week, then start tapering 1/2mg every 5 weeks if all is well?

A couple weeks ago I finally received my November dexa scan results recommending a biophosphate if I were to take above 7.5mg for 3 months (which I was doing at the time of the scan). I am reluctant to take it as I am prone to reflux and have a hiatus hernia. My GP’s advice was to avoid it especially as I had now reduced the pred below 7.5. Hence my reluctance to revert to 8mg.

In addition to this my breathing is worsening when I walk. I had CT Lung scan as part of the national screening which was clear. I am now waiting for a 72 hour Holter heart monitor.

I welcome thoughts and advice from the knowledgeable people who give their time to help so many of us on this site.

[PMRpro Ambassador]

Half a mg here or there isn't going to make that much difference - especially if at 8mg you feel well and are able to exercise because lack of exercise is also a risk factor for all sorts of things including weight gain and osteoporosis. How you felt at 8mg is how you should expect to feel at any lower dose - if you don't, then you are probably now on too low a dose.

If you have reflux or a hiatus hernis, then oral bisphosphonates are contraindicated. The alternative is an infusion of zolendronic acid or denosumab. Listen to the excellent video DL posted today for some discussion of that.

healthunlocked.com/pmrgcauk...

If I were you, since you are waiting for a Holter monitor, I would postpone starting any bisphosphonate until after that has been done at the very least. I recently had an ablation procedure that has "cured" my atrial fibrillation and for 3 weeks post-procedure I felt fantastic and felt no arrythmia at all. Then I had a zolendronate infusion and although I had no immediate symptoms, I then had a very unpleasant 2-3 weeks - and it seems I have now developed atrial tachycardia! And the cardiologist said that is almost certainly due to the bisphosphonate as it is a common adverse effect. It seems to have calmed down now so I will reserve judgement on having another infusion next year ...

But the way the recommendation of the bisphosphonate in the dexascan is termed makes me suspicious that actually, it isn't warranted at this stage. Do you know what your t-scores were? In the video I mentioned above, I was very interested in Tim Spector's comment about not starting bone protection medications too soon - because there is a risk that they then may not work when you actually need them much later.

[Lclmlbls in reply to PMRpro]

Thanks for your comprehensive reply. My scores: lumbar spine T score -1.5. Z score -0.7. Femoral beck T score -1.8 z score 0.1. Total hip T score -0.7 z score 0.9. It also said “Osteopenia (please note this not a diagnosis and represents only a classification of bone density)”

[PMRpro Ambassador in reply to Lclmlbls]

Those figures are much the same as mine were at the start of PMR and pred and it was agreed that I needed calcium and vit D but not a bisphosphonate yet. It was 15 years on pred before I needed a bisphosphonate this year.

The ZOE video that DL posted earlier included a bit of discussion on that - same as my view, bisphosphonates should be reserved for when they are needed because bone density is low or there is other evidence of need. Take them too soon and they may not work when you really need them as long term use changes the bone structure.

[Lclmlbls in reply to PMRpro]

My doctor’s advice was not to go down that route, but she wanted me to take time to think about it and discuss with her at a later date. The video was very informative although I was a little concerned about their advice not to take calcium / vit d supplements. I’m taking 4 per day and doctors advice was to continue with them m.

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

Like most things, that has to based on individual circumstances - and should be discussed with doctor…

[PMRpro Ambassador in reply to Lclmlbls]

I don't agree with their no supplements at all FOR US. They were talking about normal healthy subjects and they didn't make that clear. The pred has an effect on both calcium and vit D absorption in the body and taking extra is for a reason. I stopped calcium because it was causing bladder problems but I have taken 4000 IU vit D for years because if I don't, after a couple of months my blood vit D level slowly drops to deficient levels.

Sorry - not to go down what route?

[Lclmlbls in reply to PMRpro]

Sorry I didn't make that clear - bisphosphonates route.

[PMRpro Ambassador in reply to Lclmlbls]

I certainly wouldn't with those t-scores. Not a present anyway.

[Lclmlbls]

Yes, I didn't want to start taking any more drugs if they aren't absolutely necessary.

I took 6.5mg pred early this morning as usual and have felt very slightly better today. Do I just need to give the new dose a chance to settle down before thinking about increasing?

[PMRpro Ambassador in reply to Lclmlbls]

If you felt better that fast, give it a few days and see how you do.