Blood checks

[Kirklasu]

Hi

My mum had been on 1 mg but because of much pain was put on 15 mg by a doctor who was not her usual doctor

I wrote to her usual doctor with information about this website and some of the learnings including tapering

He doctor wanted her to come down to 10 mg and she did this after 3 weeks on 15mg

She's been on 10 mg for 2 weeks and has had a blood test showing her blood is 5 (I don't know what these units are). As a result her doctor wants her to reduce dosage to 7.5 after a 3rd week on 10mg and then reduce to 5 mg after 3 weeks and have another blood test.

This all seems very fast to me but is it because she had been down to 1 mg and should never have been put back onto 15 mg?

As I say she is taking 10mg now but is very weary and walking very slowly ( and loves walking).

Please advise if the doctors plan sounds acceptable?

Thanks

[DorsetLady PMRGCAuk volunteer]

Hi Kirklasu,

The reading are either ESR or CRP, and are in the right area, but that’s because the steroids are controlling the inflammation. Doesn’t mean her PMR is gone.

Looking at previous post is it correct that she reduced to 1mg within 12 months? If so, then much too quickly, which is why she had problems.

Can understand why doctor put her up to 15mg, and why he’s trying to bring her down quickly again to 5mg, very often a short sharp blast of Pred gets things in order again, and patients can return to the lower dose relatively easily. However, if she’s still feeling bad at 10mg then it doesn’t seem to be working for her.

All I can suggest is, if she improves dramatically then maybe she could manage a drop to 7.5mg but certainly no lower than that, that dose can become quite difficult for patients even if they’ve had a reasonable journey until then.

Does she have any other symptoms apart from the fatigue, if not then it may be her adrenal glands not working correctly. If that’s the case then the slower you reduce the better, to give them the opportunity to get working again. It might be worth asking for a ACTH Test to check.

Have a look at this re glands-

healthunlocked.com/pmrgcauk...

And this if doctor is worried about her being on so called high doses -

practicalpainmanagement.com...

[Kirklasu in reply to DorsetLady]

Thankyou for such a speedy and helpful reply. Yes, my mum did come down to 1mg within approx 12 months.

I will read the links you included

Regards

Susan

[DorsetLady PMRGCAuk volunteer in reply to Kirklasu]

Hi again,

You might also like to think about asking GP to refer her to Rheumatologist.

[Kirklasu]

Thankyou,

I've read your links and spoken to mum. We'll review in a week. She feels slightly stronger today

[DorsetLady PMRGCAuk volunteer in reply to Kirklasu]

Good!

[PMRpro Ambassador]

Personally I think it is far too fast. The top experts in tapering pred say not more than 10% of the current dose and almost every suggested taper in the medical literature says 1mg at a time below 10mg. The reduction to 1mg in 12 months was also too fast - had she gone more slowly from 5mg she might have identified a dose that would have avoided the flare. The perceived benefit of that fast reduction has been totally wiped out by the flare needing the 15mg. Of course - I suspect he is thinking that she only needs a very low dose because she got there before. But it doesn't follow at all.

[Kirklasu]

Thankyou, this is very helpful. I am worried about it. I will speak to mum