Reducing steroids, and osteoporosis

[Margot27]

Hi, this is my first ever post on the site. I was diagnosed with PMR in April 2018 after being very unwell for about 5 months. I started on 20mg prednisolone, then got quickly down to 10mg. Things continued well for a while and I was able to get down to 7mg (more or less left to do this at my own pace as agreed with my doctor). However, I found that reducing from 7mg, using the Dead Slow Nearly Stop method, I still got some aches and pains, although I am now down to 4.5mg. I am keen to reduce my dose as quickly as possible as I also have Osteoporosis, and am now on Denosumab to protect my bones. What I am unsure about is whether the pain I still feel (which is mainly stiffness and also lack of energy) means I should consider going back up to the previous dose, ie whether I need to be totally pain free before moving to a lower dose. Can anyone advise on this please?

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome,

Would say you probably have 2 problems going on -

1. Your taper has been quite quick, and I would think, despite using the DSNS method, you have gone below the level of Pred you need day by day. I understand why you don’t want to, but a small increase may solve your aches and pains problem. We all want to be at the lowest dose possible, but no point in not taking enough. You might just as well not take any at all.

Can you recall the level you were at when painfree? If so, go back to that and see if it helps. You need to sort it out because the longer you leave it, the worse it’s likely to get.

2. Your fatigue may be due to your adrenals not working enough to supplement the Pred, to bring it up to physiological level (see following info) - or could be due to the underlying illness, which after only 18 months is still very much “there”.

info on adrenals -

Once you have been on steroids for more than 3 weeks and at a dose higher than 7.5mg (which is equivalent to normal cortisol production by your Adrenals- called the physiological level) they temporary stop working because the artificial cortisol in your body (Pred) means they don’t have to.

That’s means in a stressful situation where they would normally go into overdrive to help your body they don’t - that extra boost has already been superseded by the constant level the Pred gives (hope that makes sense) So you don’t get that extra burst of energy to help you out of a dangerous (stressful) situation - the fight or flight phenomena!

You must tell medical people you are on steroids so they don’t suddenly stop them - that could cause a steroid insufficiency problem and your body would really struggle.

That why when we get low levels (around 7.5mg) we need to reduce very slowly to nudge the adrenals into working again.

[Margot27 in reply to DorsetLady]

Hello DorsetLady. Thank you very much for your advice, I have found it really helpful. I will follow what you suggest and try going back up to 5mg and see if that works. I also understand what you say about the adrenals. I have a fairly busy life (I'm 74 and retired but still busy) and I think from what other people say that maybe we're not meant to do as much, when we have PMR, so I shall try to take things a bit easier, which could help with the tiredness. Thanks again.

[DorsetLady PMRGCAuk volunteer in reply to Margot27]

Yes you are right, you have to learn to pace yourself when you have PMR.

The steroids are only addressing the inflammation that your illness produces, but does nothing for the illness itself. That is still chugging along underneath - so you have to remember that.

Hope the 5mg helps.

[Margot27 in reply to DorsetLady]

I will, and thank you for taking the time to reply to me again. I’ll let you know how I get on.

[HeronNS]

Just to add to the comments about tapering. If you find increasing the pred is not as helpful as you expected there is, unfortunately, also the possibility that you are getting side effects from denosumab. As you probably know, if you have had more than one dose of this particular bone medication you must not stop it without immediately being put on a different bone med to reduce the chance of rebound osteoporosis. Hopefully you will do fine with a reasonable increase of pred and then a slower taper, I just want to make sure you're aware of this other possibility.

Do you take any supplements? If you are on extra calcium you may need more magnesium to maintain the balance. And vitamin k2 (not k1) is also important, as well as vitamin D of course. Magnesium also helps with pain.

[Margot27 in reply to HeronNS]

Thank you very much for your advice, particularly re supplements. After reading a book called 'Your Bones' I have in fact just (last week) started to take K2 and magnesium, so it's reassuring that you recommend these. And yes, I do take the Vitamin D, but not extra calcium, which I try to manage through diet. Re denosumab, I have only had alendronic acid hitherto, had my first injection of denosumab 3 months ago. I don't think I feel any worse after it, i.e. same level of stiffness etc that I was experiencing before, it's just that I have been stuck on the same level of pred for a long time (since end April), and when I try to reduce, even 0.5mg once a fortnight, I notice more stiffness. But I'll go back up to 5 and see if that works, or higher if not. I'm going on a walking holiday in France next month and want to be sure I'm up to it!

[PMRpro Ambassador]

If you are on denosumab you needn't be concerned about stopping pred because of the osteoporosis. If you try to go to too low a dose of pred for your PMR all that will happen is that the symptoms will return - eventually as bad as they were to start with. That means inactivity - and inactivity is as great a risk factor for osteoporosis as pred which DOESN'T inevitably lead to loss of bone density, mine had barely changed in over 7 years on pred at above 10mg/day for most of the time.

You can do as much as YOUR body will let you when you have PMR. There are some things I can't do but others I can do fine - driving and travelling in general are fine for me with a few adaptations. Housework is a real no-no - hands and back make themselves known very quickly and then the pain stops me. Pacing makes a lot of things possible - just in smaller bites.

healthunlocked.com/pmrgcauk......

[Margot27 in reply to PMRpro]

Thanks for this. I am very encouraged by your saying that your bone density didn't change much over 7 years, because to be honest that has been my main worry. If I didn't have osteoporosis I wouldn't really worry so much about reducing the pred. So that's very helpful information, hopefully it will be a similar story for me! And thanks for the link too, I have read all about the spoons and the gorilla, and the sjogrens, all very interesting and informative.

[PMRpro Ambassador in reply to Margot27]

The denosumab is being used to increase the bone density despite the pred. So take the pred and be able to move too

[Margot27 in reply to PMRpro]

I will!

[HeronNS]

Were you ever checked for secondary causes of osteoporosis? There's a good little item on the American Bone Health website which I will try to find and post here.

[HeronNS in reply to HeronNS]

Actually I made a post with that title, secondary causes, etc, and am having trouble copying URL so if it's of interest should be easy to find. Posted a month ago.

[Margot27 in reply to HeronNS]

Thank you, and to Poopadoop for attaching the link. There is a huge amount of information available here, I will read it all carefully and I'm sure will find it very helpful. The American Bone Health site too looks a fantastic source of information, so thank you for pointing me in that direction.

[Hidden]

This is another link originally provided by heron.

osteoporosis.ca/about-the-d...