Ultra- Slow taper needed?

[Siral]

I was diagnosed with PMR 18 months ago and am being treated with Prednisolone. In April last year I started DL's 5- week taper routine and have successfully got myself to the 'from 0.5mg to 0.0mg' taper. I've just completed my 3rd week but for the last few days have had headaches, some lower abdomen pain (left side only and feels like indigestion) and have felt vey lethargic and tired. Tiredness has been with me most of the way. I'm a type 1 diabetic and have also had high blood glucose (BG) readings for the last 2 nights, which is not normal for me. I know that high BG readings can be an indicator of infection so I'm seeing a doctor this afternoon. However, while lying awake at 3am this morning, nursing a terrible headache, it came to me that maybe it's my adrenals struggling and I should go back to the start of the 0.5 to 0 taper or even change to the Ultra-slow 14 week taper. Does this sound like a reasonable thing to do?

[piglette]

They say that it can take a year or more after stopping pred for the adrenal glands to get back to normal. Good luck with the doctor.

[DorsetLady PMRGCAuk volunteer]

You could well suggest the ultra slow taper to doctor - take a copy to show him/her and see what they say.

As piglette says can take long time for adrenals to get back to full function.

Please let us know how things go.

[Siral in reply to DorsetLady]

After a doc appointment mix up I was re-booked for the following day (this morning), by which time I had greatly improved. The doc and I decided to push on with the current taper plan and get the Prednisolone out of my system as soon as possible - because of its effect on my diabetes. She was impressed with your graphs and said I probably had a better idea than her of how to successfully taper. So thankyou!I'm aware that my adrenals will take a while to be fully functional but they did a fairly good job of winning the battle after my few terrible days. I can't believe how good it feels to be back to how I felt, this time a week ago.

I did a covid test, at Snazzy D's suggestion, and that was negative, which was good too.

[DorsetLady PMRGCAuk volunteer in reply to Siral]

Good, fingers crossed all continues to go well.

[SnazzyD]

It may well you have something else going on but your body can’t quite produce enough cortisol to cope with the extra physical stress. One thing at a time, get checked and perhaps you need an extra couple of mg to get you through whatever this is. It took me a year to get from 1mg to zero. Whilst my tests were ok, any extra demand on the body from physical or emotional causes could sometimes leave me feeling wrung out. Are you doing a Covid test? Intestinal symptoms can be a feature.

[Siral in reply to SnazzyD]

My Covid test was negative, thank goodness. I did it before I went to the GP. I've improved greatly over the last 2 days so am going to push on with my current taper plan and get the Prednisolone out of my system as soon as possible. It must have been a bug I picked up, that knocked me around, but I'm pleased that my struggling body managed to fight it off without further medical intervention. Maybe my adrenals are coping ok after all.

[Siral]

After my ‘hiccup’ of feeling unwell last last month, I had to have blood tests for my annual Diabetic check up. Tests for Cr Protein & ESR were added, to be checked, because my last PMR tests were 4months ago - Nov 2021. All diabetic related bloods were fine but shock/ horror my CrP was 61 ( <1 in Nov) and ESR 16 (5 in Nov). The dreaded flare had struck.

I was put on 5mg/day, for 3 weeks, in an attempt to ‘knock it on the head’. By the time I got the results it was closer to 4 weeks but the results were good & similar to my Nov results (CRP <1, ESR 5).

The GP has suggested I go back to 1.5 mg/day and sit there for a few weeks before trying to taper again.

Does this seem like a reasonable plan to those of you that have years of experience under your belt?

[DorsetLady PMRGCAuk volunteer in reply to Siral]

If you’ve been on 5mg for 4 weeks going straight back to 1.5mg might be a bit of a shock. I’d be inclined to step down 3.5mg for a week, then down to 1.5mg -and then as GP suggested.

Hope it works, sure you’ll keep us informed.

[Siral in reply to DorsetLady]

Thanks! I thought that jump would be too big too so will do as you suggest. Not sure why everything’s underlined 🤷‍♀️

[DorsetLady PMRGCAuk volunteer in reply to Siral]

Good plan .

You must have tapped U icon by mistake …. To get rid of - just select all text and tap icon again.. when it’s active it shows blue in colour