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..
I have been on PMR-level pred for over 9 years. After over 7 years my bone density was barely changed from the outset - I’d had a dexascan within 3 months of starting pred which showed t-scores of -1.1 and -1.3 I think they were. After over 7 years they were still about -1.3 on a different machine so essentially no difference. I had been given calcium and vit D supplements and alendronic acid at the start of long term pred. I happily took the calcium and vit D (and still do) but after 4 AA tablets did my homework and decided I wasn’t happy. I saw a different doctor who agreed with my view of the emerging evidence about bisphosphonates and said I could wait for the result of the dexascan before a decision was made. I had mild osteopenia which is essentially normal for my age and that is not now felt to be a criterion for bisphosphonate therapy.
Bisphosphonates should not be used for more than 3 years without a drug holiday or it raises the risks of long term side effects - including the development of atypical femoral fractures. Longer term use of bisphosphonates leads to the formation of a different structure of bone which is porous and has microcracks - it can break without any stress being exerted on it. There have been a few members of the forums with such problems in the past few years.
If your husband has normal bone density now and takes a bisphosphonate it may lead to an increase in bone density - and I doubt that is a good thing either! There is no direct correlation between bone density and fractures - people with high bone density have fractures, people with low bone density don’t necessarily. There are a lot of things that can be worked on to reduce the risk of falls - which are the main criterion for fractured hips.
One thing I would do is split the calcium dose into 2x500mg per day as the body doesn’t absorb more than about 500mg at a time, so 500mg is wasted with the high dose tablet. He also needs to get his vit D checked - low vit D means the calcium won’t be absorbed as well either. Anhaga is the expert on here about other supplements and ways of improving bone density naturally - not that that is of great immediate concern for your husband.
But the bottom line is: if it were me, I would not take the bisphosphonate until I had had a dexascan that told me I had lost bone density in the time I had been taking pred. It is felt the most change in bone density is in the first 3 months of pred treatment - if that is so, your husband has already reached that stage hasn’t he?
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.
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
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.
Oh yes - PS, diana reminded me: calcium should not be taken within 2-3 hours of taking the pred. Pred for breakfast, calcium for lunch and dinner…
Yes I learnt that from you Eileen thankfully!
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.
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
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.
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).
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 !!!
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.
thanks i will take it with my vitd at lunch time
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.
I think i will just try 500mg a day first.
I’ve only just found all these replies - thanks so very much. George is reading them all now.
I used to receive emails with the ‘posts’ , but I had go in search of your replies this time…
There is more to ask you -
The French rheumatologist put him on other things as well:
Methotrexate ‘Imeth’ 10 mg - to be taken only on Mondays.
Folic Acid 5 mg - to be taken only on Tuesdays.
Uvedose: Colecalciferol 100,000 iu in liquid form, in an ampule - to be taken once every 3 months!
Quirky prescribing.
The Uvedose must be Vitamin D. He has been having 25 mg Vit D3 tablets in Summer, and 50 mg in winter. Should he continue with any tablets, or is the ‘once in 3 months’ ampule going to cover it? Or could he stick with the vitamin pills from Boots? We’d both rather keep it as simple as possible. He takes a lot of heart pills as well, poor chap..
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.
The line here in Italy is that multiple smaller doses is better than one enormous dose of vit D - and by that they mean 25,000 IU weekly. It is absorbed better they say and less likely to cause gut problems. Has he had a vit D level done to know if he needs it? Which would he rather?
Hum, methotrexate. There’s a controversial drug! There are no reliable clinical trials to show it makes a significant difference. - there are 3, one said it helps, one said it didn’t, one didn’t know. And the one that said it did get patients to a lower dose found at 5 year follow-up that it hadn’t resulted in fewer adverse effects to pred - so why bother? It works via a folic acid pathway - so that is to replace it and reduce side effects. He may well need more than 1x 5mg, some need as much as 5mg daily. You don’t take it the mtx day.
It MAY allow him to get to a lower dose, it MAY reduce the risk of flares while reducing. But it adds an extra layer of side effects - and they are not insignificant for some people. Why Mondays? It should be his choice which day! I’d say it is his choice whether to take that - if it doesn’t upset him with side effects it is possibly worth trying. I tried it for a month last summer and hated it - my hair fell out in chunks, what are usually listed as pred side effects appeared for the first time (hunger, bruising, weight gain), I had muscle aches and pains (as if I didn’t have enough) and fatigue - that started after about a week and just got worse until after a few weeks I could barely put one foot in front of the other. I stopped after a month as I was heading to S Korea for a meeting - I doubt I’d have managed on the mtx. I didn’t restart it. My rheumy was quite sanguine about it. Some people manage to take it with no problems, other struggle.
It would be so much easier if every country used a similar approach…
Hi Amanda,
I have checked with our email provider and as far as I can see everything is as it should be with all emails for replies to this discussion being sent by us. Have you checked your spam/junk folder and the only other thing I can think of is if you are not receiving the emails it may be your email provider is blocking them for some reason. You would need to check with them or google how to unblock a sender for your particular email provider.
Regards,
Alan