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
EileenH Amanda4567
Posted
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?
EileenH
Posted
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...
diana21296 EileenH
Posted
Yes I learnt that from you Eileen thankfully!
Amanda4567 EileenH
Posted
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..
EileenH Amanda4567
Posted
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...
Emis_Moderator Amanda4567
Posted
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
Amanda4567 Emis_Moderator
Posted
Hi Alan,
Thanks, but, no - there's nothing in my spam/junk box , and I had to go to the forum's web site again to find my replies.
I'll try and see if my web-mail is blocking the emails..
Good wishes, Amanda
Amanda4567 Emis_Moderator
Posted
p.s. - actually, I'm receiving everyone else's posts in emails , I think, it's just mine that don't come!
Emis_Moderator Amanda4567
Posted
Hi Amanda,
This is correct then, you do not receive emails/notifications for your own posts. If you want to view your own replies they are on your profile page (click on your own name) which has a link through to a full list on this page https://patient.info/forums/me/replies
Regards,
Alan
Amanda4567 Emis_Moderator
Posted
Oh, thanks - I see. I think I must have become temporarily confused!
Amanda
BettyE Amanda4567
Posted
If you want to be REALLY confused just try Windows10 What a nightmare and for what? Just so MS can mine even more marketable information from us for free I was fine with W7 and all its predecessors but have recently had to have a new computer.
Amanda4567 Emis_Moderator
Posted
Hi Alan,
I'm still confused, I'm afraid, and I do think something has changed -
I should not receive emails/notifications of my OWN posts, and I should find MY replies to people (who responded to my posts) on my Profile Page. I think this is what you've said, above.
But, the only emails I receive now are from other people starting new topics.
Previously, I received emails (from people like, EileenH) who had responded to a post of mine. Now I have to search in the forum to see if anyone's responded.
I hope I've managed to explain clearly - it's difficult!
Amanda
Amanda4567 EileenH
Posted
Yes - different countries - different approaches.
We notice that the French doctors prescribe heavily for almost everything, and always give you at least 3 medicines!
When his first 3 months dose of Vit D is done, he's going back to the daily pills - because it's easier.
He doesn't seem to have problems with the weekly Methotrexate pill, so is continuing for now, but we'll watch what happens.
I read the report from the European/ American Research on PMR - you posted the link to it some time back - I remembered I'd seen in it that Methotrexate looked controversial. This forum is so useful! Thanks, again.
Emis_Moderator Amanda4567
Posted
Hi Amanda,
Yes you should receive emails when someone replies to any discussion you are following. It may be that no-one has replied recently. As a test you should get an email notifying you of this reply. You can check in site on this page https://patient.info/forums/me/notifications for all notifications. This is basically a list of all the emails you should receive.
Regards,
Alan
EileenH Amanda4567
Posted
As far as I know, you will only receive notifications of an existing thread if you have clicked on Follow opposite the title at the top of the post or if you have replied to the post.
Has anything been changed on your settings (deliberately or by accident)?
Amanda4567 Emis_Moderator
Posted
Thanks, but no, I haven't received any email reply from you, or for the one below, from Eileen.
I'll see what there is now your link.
A