Is Bisphosphonate treatment essential when taking Prednisone?
Posted , 14 users are following.
I haven't contributed to the forum since before Christmas, but have been reading everything, including the occasional very helpful 'links' from Eileen, so this is to say, first, how very grateful we've been for this help from the forum, especially from Eileen.
Husband George (who is about to be 76) was diagnosed in UK with PMR last October and put on 15 mg Pred.
When he got home to France village doctor wasn't up to it, but eventually she sent him to a rheumy who put him in hospital for 4 days, for many tests. The outcome being, just what we thought, that he has PMR! Or, PPR, as the French call it.
He has gradually reduced to 10mg Pred, with no problems so far. The Rheumy has asked him to reduce down to 5mg by beginning of September... sounds a bit soon...
One of his tests was bone-density and it came back normal. We understand that taking Pred could lead to osteoporosis.
Rheumy has written: " The patient is having a corticosteroid therapy, and treatment with oral bisphosphonates is essential, with densimetric control during 2 years". (Translation)
She has prescribed Risedronate 75 mg (Actonel) which we understand is a Bisphosphonate. He is supposed to take it 2 consecutive days each month, standing-up, to protect the oesophogas.!
We've been reading about it - including reviews - and it looks awful. People say they've had terrible experiences with this medicine. I don't want George to take it. He is a big-boned man. His bone-density is normal at present. He's been taking 1000 mg calcium each day in evenings. Isn't that enough - at least for the time being?
Does anyone have experience of this medicine? We'd be grateful for advice..
0 likes, 33 replies
diana21296 Amanda4567
Posted
I have had PMR for over 3 years tapering slowly from 30mg to 5.5mg. I have had 2 bone density scans in that time and I don't have osteoporosis and my levels haven't changed at all. I have never taken AA as don't want to take any drugs unecessarily. As Eileen says, we tend to take calcium tabs with Vit D twice a day here, but not at the same time as taking prednisilone.Hope it goes well for your husband.
Amanda4567 diana21296
Posted
Thanks you, Diana - I'm glad to say husband has decided not to take this medicine!
MariGrace Amanda4567
Posted
Since I have no history with biophosphonate treatment, I'll only mention what my Rheumatologist and my dentist told me recently during my tooth implant process. Biophosphonates cause 'jaw necrosis' if taken with any surgery - implant to the bone in the jaw. The bone will disintegrate. They both warned me not to take it.
This might not pertain to your husband. It might pertain to someone else who needs to do the research since implants are so routine, now.
The implant process (following a difficult tooth extraction and some bone removal) - caused a spike in inflammation and my use of more prednisone, but it is calming down and going well.
It is so wise to check out the pros and cons of the medications we take - or do not take. Best to you.
MariGrace
Amanda4567 MariGrace
Posted
Thanks so much for your post. Oh dear, it sounds most unpleasent and George has decided not to take this medicine thankfully.
BettyE Amanda4567
Posted
It certainly was not essential for me. I reacted badly to Alendronic Acid and managed my eight years of Pred for PMR on calceos ( calcium and Vit. D
I had a hip replacement when I was eighty and was told by the surgeon that my bone density was " amazing" for my age. Sorry, did not ask for score but that was six years ago and the hip is still perfect and no fractures when I tripped over a hose and fell heavily onto paving slabs.
Amanda4567 BettyE
Posted
Thanks for your reply, it's so helpful to read others' experience of these things
Anhaga Amanda4567
Posted
I was diagnosed with low bone mass - so not osteoporosis but getting there. I refused the medication (alendronic acid) and started doing a lot of things to build up my bones without medication. Along with calcium (which should be taken in doses no larger than 500 mg at a time, btw, for proper absorption) I take Vitamin D and Vitamin K2. I eat foods high in silica (like leafy greens) and boron, and try also to maintain a good intake of magnesium with the addition of the occasional magnesium capsule or a soak in Epsom salts.
I can tell you that in the intervening year between two DXA scans, during which year my pred dose was still above 5 mg, my bone density not only stayed the same, it improved, and medication (which I'd never taken) is no longer recommended.
margaret22251 Anhaga
Posted
Hi, when do you take vitK2, same time as vitD, and the Boron how do you take that please.
My doctor told me i was having enough calcium in my food, cheesh, yogurt, milk etc, is this enough.
Many thanks
Anhaga margaret22251
Posted
I think it's generally recognised now that most pf us get enough calcium from our food, from our leafy greens as well as dairy. I've read that some people try to take their vitamin supplements separately from one another but I really don't know if there is any benefit to this. One of the calcium supplements I take happens to have boron as an ingredient but a lot of foods contain boron, prunes being the most well known but there are others, as Google can tell us. I think most vitamins are better absorbed if taken with a meal, or at least a snack.
As you are not taking a calcium supplement this won't apply to you, but for anyone else who is reading this reply, don't take calcium at the same time as pred - they interfere with each other. Pred for breakfast, calcium for lunch and supper, or possibly bedtime.
Anhaga
Posted
And I should add that those of us on pred may indeed need a calcium supplement just because of the effect pred has on our calcium metabolism. Another mineral to make sure you are getting enough of is magnesium which also, if a separate supplement, should be taken away from pred and calcium. Calcium is a bit of a difficult animal. For a while I was taking liquid iron supplements and these, too, should be taken away from calcium (although they are all right with pred).
margaret22251 Anhaga
Posted
phew, i already have a time table for my meds, if i add calcium i dont know when to take it.
one thing i have found, i take my magnesum at around 9.30pm i can sleep better.
my timetable - pred first, two hrs later folic acid two hrs later paracetomol, lunch with vit d, then two hrs paracetomol, then pred at teatime, then if i can fit it in acidophilus oh then somwhere magnesium
any ideas when i can fir in calcium !!!
EileenH margaret22251
Posted
Lunch and tea/dinner/supper - it is absorbed better with food and is fine together with vit D (most of us have a combined calcium/vit D supplement) and magnesium. and it only needs a couple of hours between pred and it.
margaret22251 EileenH
Posted
thanks i will take it with my vitd at lunch time
EileenH margaret22251
Posted
How much calcium are you going to take? Not more than 500mg at a time is advised - your body doesn't absorb more than that at a time.
margaret22251 EileenH
Posted
I think i will just try 500mg a day first.
Anhaga margaret22251
Posted
I found it quite difficult while I was on the iron - a spread sheet might have helped! But not difficult without the iron. Magnesium only needs to be taken separately from the calcium if your calcium/magnesium balance is askew. Many calcium supplements include magnesium and this should maintain the balance. If there is too little magnesium in your body in relation to calcium, then apparently the calcium can interfere with absorbing magnesium hence the advice to take it as a separate supplement. I avoid the issue completely by using Epsom salts baths, although now that I've moved my new bathtub is strangely uncomfortable so I think I shall be resorting to foot baths, which apparently are adequate. The skin absorbs magnesium from the salts.
When I do occasionally decide to take a magnesium supplement I simply substitute for my bedtime calcium supplement. I take lower than recommended doses of two different calcium supplements - calcium hydroxyapatite which may be better absorbed by people on pred, and calcium citrate - generally preferred to the ubiquitous calcium carbonate. But I think the carbonate form can be made more available by consuming it with citrus.
Amanda4567 Anhaga
Posted
Thanks very much, this is all really helpful - and the suggestion of prunes for Boron!