Reducing Prednisolone and normal test results.

[Buzybe]

I saw a consultant for the first time in April this year and he suggested slowly reducing prednisolone until I reached 2mg. I was diagnosed with PMR two years ago and according to the doctor in the hospital I should have been off steroids by

June 2021.

I have had flares over this time and been up and down with prednisolone. I saw a consultant privately because my care has been through my GP., as the hospital advised that they believe that the GP can manage the PMR.

The consultant advised that when I get down to 2 mg to have a full blood test, to include Cortisone, bone, liver, and a couple of other. These tests are all normal but I am not feeling well, aching in my neck, lower legs, back shoulders and headache when waking. These aches are not severe but I am left feeling really tired. I don’t sleep well. Could this be my adrenal glands kicking in and a normal reaction?

I am not due to see the consultant until July, and I would like some advice as to whether I should just increase the prednisolone as I am worried it might get worse or develop into GCA. If I continue on just 2mg.

Hope someone can relate to this?

[123-go]

Hi, Buzybe.Firstly, predicting when you should have been off Prednisolone is entirely wrong and stressful for the patient. PMR is very individual: people don't respond equally and symptoms dictate how to proceed.

In your situation I wouldn't be considering any reduction.

Waking with aching neck, back and shoulders can be sure signs that your PMR is flaring. What dose were you on when you felt most comfortable?

It's possible that your symptoms may be due to your sleeping position and the type of pillow you use. This link may be useful:

spine-health.com/wellness/s...

If your headache becomes worse or you have changes in vision-blurring or double vision-you must report his straight away to rule out GCA.

[Buzybe in reply to 123-go]

Thank you for your wise words, I guess I was hoping that as all results of blood tests are normal I could see the end of steroids. Quite comfortable on 3mg.

[PMRpro Ambassador in reply to Buzybe]

Then stick at 3mg for a bit longer. Prof Dasgupta told us a couple of years ago that he often keeps patients at 2-3mg longer term as it reduces the risk of relapse. Which I take as a tacit admission that he realises PMR lasts far longer than he had admitted. Prof Mackie said very forcefully recently that "we must dispell the PMR 2 year myth".

The trouble is that even when the dose of pred is not quite enough for comfort, there is not enough inflammation present for long enough to trigger the production of the proteins that make the markers rise or it is very delayed and happens well after the inflammation is causing symptoms - and that is why symptoms should ALWAYS trump lab results.

[Buzybe in reply to 123-go]

Thank you for that, very helpful.

[SnazzyD]

Difficult to say re your cortisone because saying it’s “normal” doesn’t tell you if it was bottom of the normal range or tip top. Did you stop your Pred the day before your test too? Even with ok results you can still have periods where the adrenal glands decide to have a slow day or can’t keep it up if you are busy. As to which your tiredness is attributable to, PMR or adrenal function, it’s difficult to say.

[PMRpro Ambassador in reply to SnazzyD]

Or whether the HPA axis is in good enough a state to respond "normally" to stress of whatever sort. And THAT applies at any dose of pred

[Buzybe in reply to PMRpro]

I did stop my prednisolone until after the test which was at 8.30am. My Cortisone level was quite good, 434 nmol/moL. (140 - 700)

[PMRpro Ambassador in reply to Buzybe]

It is good and you are certainly on the way back to normal - but that is a snapshot, just as the synacthen test only shows if the adrenals respond to a kick with artificial ACTH and not whether your body is producing its own natural stuff to do the same.

[Buzybe in reply to SnazzyD]

Cortisone level was fine 434mmol

[Buzybe in reply to Buzybe]

So what is the best advice to proceed, ask for a specific test or go back to 3mg and go steady?

[PMRpro Ambassador in reply to Buzybe]

You know your adrenals are working - but they won't be working perfectly for some time to come. There are no tests that can tell you that - just experiences really.

Are any of your aches/feelings more PMR-like? That is what I would be more concerned about. 2mg is a fairish dose and plenty to keep low levels of inflammation in check. Even 1/2mg can do that - but zero is a step too far.

[Buzybe in reply to PMRpro]

Thank you for that I will keep on 2 and discuss with consultant in July.

[PMRpro Ambassador in reply to Buzybe]

But I realise that what wasn't clear from my reply is that if you feel better at 3mg - then that's possibly what you need for now. If 2mg is fine - that is probably better in the long run

[SnazzyD in reply to Buzybe]

I’d do the latter but also slow down so you don’t keep challenging your adrenal glands in case they can’t function 100% all the time. Your blood test shows they can do something but not if that’s all the time.

[piglette]

The symptoms you are mentioning sound like too low a dose of steroids rather than the deathly fatigue of adrenals. I must admit I am not overly impressed with your consultant. Were you unhappy with your GP that you went to a consultant?

[Buzybe in reply to piglette]

I hav

[Buzybe in reply to Buzybe]

I haven’t seen my GP for overt 2 years., and he thought some of my symptom were not PMR related. Hence a private appointment. Health service would not give me appointment as they said they let GPS monitor PMR.

[piglette in reply to Buzybe]

If your GP thought they were not PMR related why on earth weren’t you allowed to be referred I wonder? When did your GP say that they thought they were not PMR related, if you have not seen them for two years? Do you think you have gained anything by seeing someone privately?

[Buzybe]

When I advised him via telephone appointment that I had pain in my left shoulder and down my arm.