ALENDRONIC ACID

[BRANTwood1949]

just been put on 70mg of ALENDRONIC ACID any information would be welcome

[olive2709]

First is this in response to Dexa scan. I have been on this for 10months lucky for me no problems main thing is to take it as instructed plus if on other drugs talk to pharmacist ,

[PMRpro Ambassador]

Have you had a dexascan? What were your t-scores? If you haven't had one - insist on having one before starting to take AA. It is better not to take it "just in case" if you have good scores since extended use of it is not beneficial, even though many doctors will tell you it is fine. Current studies are suggesting otherwise. I have never taken it and in nearly 8 years on pred my bone density has barely changed.

[Bonnig in reply to PMRpro]

MY Rheumie wants to start me on Fosamax during this first six months of PMR diagnosis...I'm scared. I've read some scary stuff.

My T scores aren't good:

L1 -2.4, L2 -2.0, L3 -1.9, L4 -2.8,

L1-L4 -2.2

Any advice would be really appreciated.

Thank you!!

[PMRpro Ambassador in reply to Bonnig]

I'm not surprised the rheumy wants you to take AA - those are low scores for the spine. What are your hip scores?

I have no quibble with taking AA when it is needed and many people do take it with no problems. The thing now is not to remain on it for years and year - as has been done in the past.

[Bonnig in reply to PMRpro]

Do anything re: Fosamax vs.Boniva?

[PMRpro Ambassador in reply to Bonnig]

I've posted over on the other thread you started but i'll copy it here for completeness:

"If anyone is confused: Fosamax is the brand name for alendronic acid, Boniva for ibandronate sodium.

They are both bisphosphonates but with slightly different side effect profiles, Fosamax is older and taken once a week, Boniva once a month or injected once a quarter.

This is likely to be a fairly good article comparing them although fairly superficially, there are no proper comparisons - the site is usually reliable:

healthcentral.com/osteoporo...

Fosamax has been used for longer - so it is the one that is beginning to give rise to doubts over long term use. Boniva hasn't been used for as long, only 10 compared with 15 years, so there are fewer patients on it. Boniva is licensed for low spinal bone density, Fosamax for hip and spine.

Whichever - a dexascan should have been done first to determine if they are needed at all and both calcium and vit D levels checked and put right if they are low (or high). And any major dental work likely to be needed done first before starting them."

[HeronNS in reply to Bonnig]

Not sure I'm reading your list right. The rather randomly determined line for osteoporosis is -2.5. I think you should be able to correct that, or at the very least stay stable, with diet, supplements and exercise. The only side effect will be generally improved health. The greatest risk for fracture is falling, so exercise which improves balance is a good idea. Learning strategies to protect the spine also a plan.

[Bonnig in reply to HeronNS]

My avg is -2.2 for all points tested.

My left hip is-2.8 osteoporosis

All other sites come up as osteopenia

I'm 53

The docs want me on Fosamax

I'm trying to decide between

Fosamax, Boniva or neither

[Bonnig in reply to Bonnig]

The docs are talking big

Time about osteo induced by prednisone !

[HeronNS in reply to Bonnig]

I know. And I do think the prednisone affected my bones, although as I had no prior baseline to measure my post-starting pred scan against I can't prove anything. I was probably heading down the bone thinning path anyway but I think my first few months on pred really did have an effect. However once I knew what was going on I started working very hard to reverse things. It's not easy. It takes time. But I'm glad I made this choice. And on the bright side, without pred and the threat of OP, I would never have thought to have had a scan, although they are recommended here for everyone at 65, and no doctor ever suggested one, even when I broke my leg pre-pred three years ago. So I'm now quite Pollyanna-ish about this. For me, a good thing has come out of a diagnosis of osteopenia (my doctor initially told me osteoporosis and I was shattered, not to say crushed, by the diagnosis). I feel everything I've done to help the bones has helped everything else, including dealing with pred and PMR.

[PMRpro Ambassador in reply to Bonnig]

Bonnig: How long have you been on pred? Did you have a dexascan done just before or within a few weeks of starting pred?

If you didn't, then there is no way they can blame it all on pred. Strangely - to listen to some doctors - the only cause of osteoporosis is taking pred. Which is utter cobblers...

[Bonnig in reply to PMRpro]

I was on pred during the holidays for 7weeks and now I've been on pred again for two weeks. My scan was taken in Sept, before prednisone. I'm only 53. They are not blaming the scores on the pred. They are worried that my scores are already poor and that prednisone can cause my osteporosis/ penia to become worse.

[PMRpro Ambassador in reply to Bonnig]

That's fair enough. Because with figures like that it is unlikely to have been the pred that did it after only 9 weeks. My bone density has barely changed after well over 7 years of pred - but obviously I don't have the same propensity as you - obviously some advantages to being overweight all my life!

[HeronNS in reply to Bonnig]

I understand. Only you can make the decision. I speak as I do because I was able to improve my t-score without the use of drugs. I was inspired by a friend of mine who was diagnosed with osteoporosis, not osteopenia as I have, and she was able to move from osteoporosis to osteopenia, and continues to improve (confirmed through subsequent DXA scans), and has only used the natural means. I think things may be different for people who have genuine fragility fractures and need whatever extra boost a year or so of OP meds could give them, but I firmly believe that everyone, whether they elect to take the drugs or not, should also be following natural strategies - that is the only thing, really, which will give the bones the materials they need to make themselves stronger. We do know the drugs do not make the bones stronger, as such, although they do improve DXA scores. They cannot give us strong, flexible bones. But our diet and our exercise can.

[DorsetLady PMRGCAuk volunteer]

Hi,

As others have said, please check if you actually need it. I did need it, and took it for four years with any problems whatsoever, but lots of people don't like, or it doesn't like them!

If you do need to take it, select a day when you don't have to rush in the morning. I always took mine on a Sunday, and then either sat down and read the papers, or had a leisurely shower, not bath, because you shouldn't lay back down after taking it. About half an hour is enough., and then you can get on with life. One person on here does his ironing!

As Olive says you do need to follow instructions though.

But if you don't need it, then why add another drug to the mix! So ask for a DEXA scan.

[Mrsd12f]

Hi, I already had osteoporosis, when diagnosed with PMR, in November 2015. The rheumatologist was concerned that I'd been on AA for a good while and took me off it, though I can't say I'd had any problems. I had a Dexa scan in September and lo and behold, my scores are not good for my lower spine. GP has put me back on it, until my next rheumatologist appointment.

As everyone else says, a Dexa scan is needed.

Good luck.

[Tonylynn]

Make sure you tell your dentist you are taking a bisphosphonate. There is a very very small risk of osteonecrosis if you have a tooth extracted or surgery. The advice to dentists is that they extract teeth in the normal way but make sure patients know to return if there are problems with the healing of the socket.

[Rokerman in reply to Tonylynn]

I just found this out yesterday! Had a Dexascan at the local hospital in the morning and a dental appointment in the afternoon - the only time they could fit me in. Happened to mention A/Acid etc and the dentist gave me the 'good' news re: Osteonecrosis - another complication of PMR that we could all do without....!

[PMRpro Ambassador in reply to Rokerman]

It actually says very clearly on the prescribing information that calcium and vit D levels "should be checked and corrected if necessary" and that any potentially required dental work should be carried out BEFORE STARTING AA.

Do most doctors do/mention it? And how much do most of them REALLY know about bisphosphonates? They seem to be oblivious of anything other than the marketing stuff they have had spouted at them since Fosamax was released.

[BRANTwood1949]

Thank you all for your thouhts

[BRANTwood1949]

on 20mmg doctor has dropped it to 15 not having a good time any advice . as any one gone down the food route to help with the symptoms of polymyalgia any advice would be welcome.

[PMRpro Ambassador in reply to BRANTwood1949]

Try going back to 20mg and then try 17.5mg as an interim. When tapering no reduction should be more than 10% of the current dose - so at this point 2mg. Most people can manage 2.5mg though.

You can try adding things like turmeric and garlic to your cooking and eating oily fish - I'm sure there are other antiinflammatory foods but they escape me at the moment! Cutting carbs also helps as sugar is very pro-inflammatory so you get a double advantage - it also helps with the weight gain.

[Bonnig in reply to BRANTwood1949]

I've just been diagnosed ... yet I've started an anti inflammatory diet

I have no idea if it's helping since I'm on 20 mg of pred per day which takes away 95% of the pain if I don't push myself

If I try to be my active old self than the pain escalates to a 4-5 level

But I can tell you that in dec, I gained weight and was bloated.

I've actually lost -.5 stone in the last few weeks on this diet

The only evidence of the pred in my body so far this time is a fuller face. Last time my breasts, arms, stomach, hips and thighs looked like gelatin

Not the chipmunk face I had in dec... but I was also on a higher dose at that time

[piglette]

There was an interesting report on Inside Health on BBC radio 4 last Wednesday on bisphonates. I liked the description that we are walking a tightrope with them!

[PMRpro Ambassador in reply to piglette]

Thought they were meant to keep us off the tightrope?

[piglette in reply to PMRpro]

I must admit the guy they were interviewing was trying very hard not to knock bisphophonates, but he did go as far as mentioning tightropes, so I got the impression reading between the lines that he was not that impressed with the way they are currently prescribed.

[PMRpro Ambassador in reply to piglette]

I really don't have a problem with them being used for a short time in people with really poor bone density - but not ad infinitum as some doctors do.

And it is based on some rather rocky assumptions about bone density. Did you know, for example, that more than half of fractures occur in people with "normal" bone density?

[piglette in reply to PMRpro]

I can believe that about fractures. My brother always says if you fall down the steps with a fantastic bone density you are more likely to get a fracture than if you don't fall with a rotten bone density!!

The guy in the radio programme said 3-5 years taking bisphosphonates was quite enough, so they are dropping a bit from five years. It was the long term problem that the bisphophonates stop the bone healing itself that they concentrated on.

[PMRpro Ambassador in reply to piglette]

I have heard suggestions for 2 years.

[piglette in reply to PMRpro]

I think 2 years is probably closer to the correct timing, but at least they are not talking about just five years any more, which is pointing in the right direction at least.