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[Bowls70]

Hi. I was diagnosed with PMR at the end of January and been taking 20mg of Prednisone. Yesterday started reducing to 15 mg by alternating between 3 and then 4 tablets alternately. Dr recommended taking alendronic acid? Not keen on this idea. Any thoughts?

[SnazzyD]

Hello,

There is so much written on this site about it, so it’s worth searching in the box up on the right here. However, whatever the pros there are undisputed cons for many and at the very least they should be doing a DEXA scan to see if you actually need it. I believe recent research says it shouldn’t be given ‘just in case’ any more but a majority of docs still seem to regard it as a magic sweetie. There are definitely those who need to have it though. They said I had to take it but I refused to even think about it until I had a scan. It turned out, like for some others on this forum that I didn’t need it because I had mild osteopaenia which can be treated with calcium and vitamin D. I would definitely go all out to learn everything you can about bone health because there’s more to it than popping a pill of any sort. This book was recommended here and I found it excellent. It’s one of those you can dip in to

Your Bones - How you can prevent osteoporosis & have strong bones for life, naturally. By Lara Pizzorno

[Bowls70 in reply to SnazzyD]

Thank you so much for the advice

[DorsetLady PMRGCAuk volunteer]

Hi,

And welcome,

You may find the reduction you are on a bit too much. So do, some don’t! If you feel you are getting any symptoms return, you need to talk to doctor - don’t just continue reducing.

Have a read of this - and as SnazzyD recommends check if you actually need AA -

healthunlocked.com/pmrgcauk...

[Liskeard]

Hi there

Welcome

I’m a newby as well - diagnosed December. Loads of great advice on this site and questions are answered by really knowledgeable and supportive people. A few things I’ve learnt so far - reduce prednisolone slowly, 10% at a time (ask GP for 1mg tablets), 60% is now our 100%, reduce inflammatory foods -sugar etc., read all you can on the PMR/GCA site, recognise the need for support.

I’m sure some of the ‘aunties’ will give you excellent advice. Good luck.

[Bowls70 in reply to Liskeard]

Thank you for the advice

[Soraya_PMR]

Welcome to the forum! Sorry you’ve got PMR.

You couldn’t do better than spend an hour or three looking through some old threads, there’s a mine of information here.

Alternating 20/15, it might work for you, no way of knowing. The reductions at higher doses are easier usually. Or you could try dropping to 17.5 every day, seems smoother to me. If I recall correctly I managed to go to 17.5 ok but 15 eluded me. I had to go via 16. You can’t tell until you go too low, what dose you need, therefore smaller drops help you identify that level. Big drops overshoot the required dose and you’re left not knowing if you should be on 16, 17, 18 or 19.

Re AA, I said to my doctor, “prove I need it and I’ll consider it”. He declined to give me a dexa scan. I declined his pills! Some 10 months later I said the same to my consultant, dexa scan agreed, bones perfectly lovely 😁 Conversation dropped!

I think by far the best way to protect your bones is to keep active, walk as much as you’re able, weight bearing makes your muscles and bones ‘antagonise’ each other and keep strong. To do this you need to be as pain free as possible, and that relies upon weaning the pred oh so slowly.

[Bowls70 in reply to Soraya_PMR]

Brilliant advice. Thank you

[SheffieldJane]

Insist on having a bone density scan ( Dexa) to see if you have a problem before taking these powerful drugs. In the meantime read up about them and go to the Osteoporosis Society for ways of naturally supporting bone health.

[Bowls70 in reply to SheffieldJane]

I will. I don’t see the necessity for AA if my bones are fine

[Marilyn1959]

Hi and welcome. I found my body couldn't cope with the 5mg on alternate days ( started on 15mgs alternating with 10mgs.) So did a smaller reduction to 12.5mgs every day which worked better for me. We are however all different.

The important thing to know is that when reducing (tapering) you can misread pred withdrawal for PMR, both of which present similar symptoms. Because of this I try to give a taper a week before giving up on it, since withdrawal symptoms tend to last a few days.

[Bowls70 in reply to Marilyn1959]

Thank you Marilyn

[SheffieldJane]

From personal experience a dead slow nearly stop method of reduction is much smoother. Every other day tended to make me symptomatic on the lower day, although on the very low doses 5 mg and below, it apparently stimulates your Adrenal glands into recovery.

Have you had a bone density scan ( Dexa) that indicates a need for Alendronic Acid eg Osteoporosis has taken hold?

You should be supporting your bone health with prescribed Calcium vit D and add your own vit K2 if you are not prescribed it for help with absorption. Exercise, within your own capabilities is recommended too, and a good diet. AA is a serious drug with horrible side effects for some. I have tried to avoid it.

[Bowls70 in reply to SheffieldJane]

I am taking Vit D but not with the calcium and I didn’t know about vit K2

[SheffieldJane in reply to Bowls70]

I learnt about it on here, it helps the calcium get to the bones, rather than clogging up the arteries. ( I think)

[Liskeard in reply to Bowls70]

Also another thing I learned here is not to take the supplements at the same time as the steroids.

[PMRpro Ambassador]

There has been plenty said about your reduction plans, such big alternations in dose are hard on your body. Either get 1mg tablets from the GP or buy a pill cutter from the pharmacy and split the 5mg to give you 2.5mg and take the same dose overy day. That should be OK down to 15mg, below that you will be much better with 1mg tablets to go down 1mg at a time. Even then you may find you need one of the slow approaches as described above.

You do need calcium and vit D - and a dexascan before you agree to take AA.

[Bowls70 in reply to PMRpro]

Thank you for this. I will get a pill cutter and take 17.5 daily for a week and then go to 15. Should I tell my GP? She is seeing me in three weeks and wants me down to 15 mg by then

[PMRpro Ambassador in reply to Bowls70]

I wouldn't for the moment - if you get there OK in 3 weeks she needn't know unless you think that it will educate her - for. lord knows, she needs some education!

And I fear she may be in for a shock: it isn't what SHE wants, she is a mere onlooker here. PMR is the boss and it calls the tunes.

[Bowls70 in reply to PMRpro]

Thank you very much. It’s all a bit overwhelming at the moment.

[PMRpro Ambassador in reply to Bowls70]

It is at first - but in a year you will look back and realise how far you have come and how much easier it has become to fit PMR into day to day life! You can live pretty well with PMR/GCA but you have to acknowledge your limitations and learn to adjust to them. That isn't giving up - that is realism.

[Bowls70]

Thank you!