Not sure what to do next

[Urtica]

Hi (I used to be Calvi but changed my email and couldn't remember my log in details so found it easier to start again!)

Briefly, I was diagnosed with PMR in Dec 2016 after 6 months of pain and stiffness. I started on 15mg, then 12.5mg, then 10mg with the DSNS 1mg reduction programme over 4 days not the 7 days.

I have reduced carefully with an extra couple of weeks at various levels due to extra travel etc. During this time I have been virtually pain free and occasionally emotional and tired but nothing really to worry about.

I have now been on 1mg for 5 weeks and am not sure what to do next. Originally when I dropped to 1mg I was OK - I could garden for quite a few hours, take longer walks with the dog, and do more hill walking. Over the last 5 weeks I seem to be tired more often (not all the time) but one day OK and the next not so good. I fall asleep in the day and evening sometimes just for 10 mins other times for 1 hour or more. I seem to have more aches and pains especially neck, hands and legs. I often feel like I am getting a hot flush and other times my legs feel hot but my feet are icy cold and I feel that my "thermostat" is not working properly.

Do you think I should stay at 1mg for a couple of months and see how things go? Could it be adrenal glands not working properly? Any advice would be appreciated.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you’ve been on 1mg for 5 weeks and you are getting problems would suggest it’s not enough.

You could try increasing by 1mg or even 0.5mg just to see if it makes any difference.

It may well be your adrenal glands, but would have thought the problems would have started at a higher dose. Or, of course, maybe you are pushing yourself just a little too much!

If you think it’s adrenals then request an ACTH Simulation Test, but in the meanwhile ease up a bit and try a small increase. No shame in that....as I’m always saying the tiny reductions at the end are sometimes the most difficult! It will come, so don’t spoil it by ignoring the signs that you’re not quite on track at the moment.

Good luck.

[Urtica in reply to DorsetLady]

Hi

Thanks for your advice. I think I will go back to 1.5mg and see if that helps. If not perhaps to 2mg. Initially I thought I was ok reducing but I realise now I probably need a bit more. I will let you know how I get on.

[DorsetLady PMRGCAuk volunteer in reply to Urtica]

At such low doses there’s no point in struggling. A little extra will do no harm, but may do a lot of good!

[Urtica in reply to DorsetLady]

Thanks again - I shall go up to 2mg and see if I feel better.

[PMRpro Ambassador]

It could be either the PMR is barely being held by the dose - believe it or not it isn't that unusual for 1 or 2mg to be enough! - or it could be the adrenal function is lagging behind. Or both.

What you describe is typical of what I feel if I'm at slightly too low a dose. A flare won't happen immediately you go slightly too low - it takes time for the dripping tap to fill the bucket and eventually it overflows. If it were me I would go back to 2mg and see if it helps - these are such low doses that they are nothing to worry about at all. And it is quality of life that counts.

[Urtica in reply to PMRpro]

Hi

Thanks for your reply. 2mg I think tomorrow (I feel at this moment that I can’t be bothered to cut the tablets in half! !!)

[SheffieldJane]

I would want to have a Synacthen Test to see if my Adrenal Glands were functioning properly. Don’t your doctors think this needs urgent attention? Please tell me you have had medical advice? Adrenal insufficiency can be life threatening. It could be treated with Prednisalone, in fact it often is.

Once you have discounted that and I hope you can, then it will be a case of assessing the damage after a serious systemic disease, which may well not be done with you yet. All roads seem to point to Pred.

[Urtica in reply to SheffieldJane]

Hi, thanks for your advice. I thought I read somewhere that the Synacthen Test did not show if the Adrenal Glands were working just that they are capable of doing so?

Because of Easter I will not be able to get a doctor's appointment before next Tuesday but if I don't feel any improvement on 2mg then I will definitely get in touch with the doctor next week.

[SheffieldJane]

If this link works, the article explains the Synacthen Test in terms that even I can understand. patient.info/health/synacth...

In the absence of doctors over Easter, I think your plan to take a few mgs more will probably put you right. I feel not unlike you at 7 mgs and have been really helped by 1 mg more. I just felt concerned because you’d got down so far. I get the thermostat thing too. However, I take too much Pred for the test I think.

[Urtica in reply to SheffieldJane]

Thanks Sheffield Jane. The link is very helpful. I had a good sleep last night (not always the case) and feel much better today. I have taken 2mg this morning and will continue on this for a while before trying again to go to 1.5mg (but only if I feel OK). I find it very difficult sometimes to decide whether it is the PMR, or just getting older - 70 this year. I have to learn to pace myself I think.

[PMRpro Ambassador in reply to Urtica]

Like SJ, if I had got to 2mg and was well I REALLY wouldn't be worrying about getting lower. It is such a low dose it is doing no harm - and may well be doing a great deal of good for you.

[Urtica in reply to PMRpro]

I understand now that I do not have to completely get off the pred and there is no rush. Thanks for your advice.

[SheffieldJane]

If I get down to your levels of Pred I don’t think I would be too worried about staying there if it kept me going. You are well out of side effects territory and a couple of mgs might make all the difference to your well being.

I don’t think we should expect to feel unwell and exhausted at 70. We all know people who are skipping about.

[Urtica in reply to SheffieldJane]

I get frustrated I am not always skipping about and get tired sometimes but have decided not to worry too much on the dosage, just to enjoy the good days and learn to take it easy when I am not feeling quite so energetic. Thanks again for your input.