Bisphosphonates for Long Term Steroid Use

[piglette]

My GP has been going on about me using Alendronic Acid since 2016. He went on about it again yesterday. He said they they have been told that anybody who has been on long term steroids MUST be given AA. I pointed out that my Dexascans were excellent and he looked them up and agreed, but he said that made no difference. I was wondering if anyone knew where these commands were coming from. I did not give in to AA but did agree to join some AA research group of a friend of his in a moment of weakness.

[SnazzyD]

Have you ever had a DEXA scan??

[piglette in reply to SnazzyD]

I forgot to mention that, I have had two and mentioned that to the GP and he agreed my scan was pretty good. In the plus range, but that made no difference.

[DorsetLady PMRGCAuk volunteer]

Excerpt - but it's only a recommendation-

BSR guidelines para 6

Para 6 ) We recommend the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis (A􏰁).

A. Individuals with high fracture risk, e.g. aged greater than 65 years or prior fragility fracture

Bisphosphonate with calcium and vitamin D supplementation

DEXA not required

B. Other individuals

Calcium and vitamin D supplementation when starting steroid therapy.

DEXA scan recommended

A bone-sparing agent may be indicated if T-score is -1.5 or lower.

C. Individuals requiring higher initial steroid doses

Bisphosphonate with calcium and vitamin D supplementation (because higher cumulative steroid dose is likely)

[piglette in reply to DorsetLady]

I remember seeing that several years ago, I just thought things might have changed with all the recent research from Imperial College. Probably my GP read it once and it has just stuck in his head. It is amazing the doctors I have seen for things other than PMR who come up with I should be taking AA. It was obviously good PR from someone, probably Merck!

[PMRpro Ambassador in reply to piglette]

It will take the best part of 10 years for the results from Imperial to get into mainstream medicine, never mind into recommendations that rheumatologists take 2+ years to approve after taking 4 or 5 years to draw up!

[piglette in reply to PMRpro]

Oh well, I will live in hope and carry on arguing with my GP, it is getting a bit like Ground Hog Day.

[PMRpro Ambassador in reply to piglette]

Too much to hope they are aiming for retirement soon?

[PMRpro Ambassador]

Sorry - this isn't certain countries. The patient does have a choice. And they are RECOMMENDATIONS. Not legal compulsions.

[jinasc]

Dorset Lady posted:

Para 6 ) We RECOMMEND the use of bone protection when initiating steroids for PMR to prevent the complications of osteoporosis (A􏰁).

No where does it say it has to be Alendronic Acid. In fact if I needed to take a biopshonate that would be the very last one and there would have to be no other choices.

There are samples in the baskets you will notice on some GPs desks. Does your GP know that some Dentists will not touch a persons teeth if they are on AA. I would ask s/he the question.

If you HAVE to HAVE one - go to the Royal National Osteoporosis Society website and then check all the side effects and choose. Your body, your choice.

Me? GCA and 5 years with pred, no Dexa till 6 months down the line, My GP and Rheumy said earlier was useless, but in six months it could show up. Bone Density 97&, Dexa every 2 years................no change ever.

[piglette in reply to jinasc]

My GP did say it was bisphosphonate that they were told we should take not Alendronic Acid particularly.

What are the samples of?

[PMRpro Ambassador in reply to piglette]

Alendronic acid is a bisphosphonate - and most of them probably do something similar!

But they are supposed to START with calcium and vit D!

[piglette in reply to PMRpro]

The BSR guidelines don’t say they must start with vit D in all cases, eg over 65. I am not sure they even link the two together.

[ChinaWuntoo]

I may have missed this but why are you so keen not to take Alendronic Acid?

[PMRpro Ambassador in reply to ChinaWuntoo]

At the top right of the page is a search box. Type alendronic acid into it and that will bring up a few thousand posts about it! However, if you restrict the search to PMRGCAuk that will bring up a more manageable 341 posts which will, between them at least, explain why most of us are very unwilling to take it "just in case". It very much depends what your bone density is, if it is acceptable you don't need to start on AA at the start and ensuring adequate calcium and vit D is enough for many.

Doctors claim that loss of bone density is inevitable with corticosteroids - that is not true, and there are other ways of managing it without resort to bisphosphonates which are NOT innocent and perfectly safe drugs as was presented by the manufacturers of Fosamax, the original.

You can do the same search for Fosamax which will bring up more posts, including this one:

healthunlocked.com/pmrgcauk...

[piglette in reply to ChinaWuntoo]

In my case there is no reason to take it as I do not have bone density problems. My GP just wants me to take it as he has been told anyone who has been on steroids for a long period should take it. He is obviously not up to date, like many Doctors, with current thinking. Also Alendronic Acid has some quite nasty potential side effects like necrosis of the jaw and also dentists really do not like treating people who are taking it.

[Hidden]

I refuse to take the Alendronic Acid. A lady on the forum has had trouble with her oesophagus, my friend who was on it for another disease had huge problems and recently spoken with a near by neighbour who take it for osteoporosis, she is now having problems with her throat. I can't wait to get a Dexa scan to find out the condition of my bones. Topping up with lots of calcium is what I do.

[nuigini]

Every GP and Specialist I've seen since being diagnosed six years ago, and believe me there have been many, has tried to push bone sparing medication on me. Based on what I've researched and read my DEXA scan would have to show very serious osteoporosis before I would even CONSIDER such a medication.

It's a personal choice.

[piglette in reply to nuigini]

I am glad I am not the only one!

[ChinaWuntoo]

Thanks muchly.

I tried to argue with my GP on the basis that AA is a bother to take and I probably didn't need it. In 80 years I have never broken a bone, I drink milk daily, I exercise and eat carefully....but he wouldn't have it. My sister has PMR and has had osteoporosis for many years. So I agreed and it didn't cause me any problems (this is what I thought at the time but I'm not so sure now).

[piglette in reply to ChinaWuntoo]

Have you had a Dexascan to check your bone density?

[ChinaWuntoo in reply to piglette]

At the time of my telephone chat with GP about AA I didn't know about such scans! I have it on my 'what to ask' list when I have the next consultation either with the GP or with the rheumatologist.

Thanks.

[Tamtan2]

I was at hospital last week for an endoscopy due to stomach problems after taking Alendronic acid my symptoms were distended stomachs and excruciating breathing problems. Found out I have a sliding hiatus hernia which needs repairing due to erosions cause by AA they think. I didn’t have a dexa scan but have asked on numerous occasions as I don’t think I needed to take AA and be subjected to all this pain which mad3 me Ill for 6 weeks.