PMRGCAuk
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Goodbye Alendronic Acid

I was prescribed AA in Jan 2014 when my GP diagnosed PMR. Having started on 40mg Pred I reached 4mg in December. Iasked my GP about giving up AA, and she said no, so I asked for a DXA scan. This happened before Christmas, and I was told that the result would be with my GP in 10-15 days.

Yesterday I received the good news. bone density normal, with a 10 year Fracture risk of 3.6% of a Major Osteoporotic Fracture, 0.6% for a hip fracture. There is a comment in the report that my bone density is above average for my age (79) so good news altogether.

I just need to continue with the Adcal, which is no problem.

I opened a bottle of wine last night - but I didn't drink it all!

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What good news for the new year! Another tablet to knock off the list after 4 years.

Cheers! :-D

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And anyway - it was high time to stop the AA for a holiday after 4 years. Maybe your GP needs some bedtime reading...

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My Gp would not agree with you PMRpro, as she told me that current guidelines say 5 years. I asked for the scan because prof Dasgupta said not needed with a low dose of pred. Dr said we would discuss when she got the report, but I didn't have to see her because there was no doubt.

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It's possible the guidelines are still saying 5 years. But there has been recent concern that microcracks eventually leading to the possibility of spontaneous fracture can start to develop after about two or three years on a bisphosphonate. For the very simple reason that when normal bone remodelling is inhibited new bone is being laid on an increasingly aging matrix. I believe recent studies show that the most benefit is shown in those first three years, with no continued improvement seen beyond then.

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I don't suppose she would - but the FDA advise that 3 years is better - and some experts are even suggesting less. The skeletons are beginning to creep out of the cupboard!!

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First things first - Refusing Alendronic Acid is probably the best thing that you could do. Long term it can result in brittle-bone disease and multiple fractures since it prevents the old bone from being recycled. I gave it up after 5 months when I received a burnt oesophagus as a result of burping after taking the weekly pill. I was also helped by having read the book K2 and The Calcium Paradox which explained why we get osteoporosis and what to do about it. The upshot is that you do need calcium but beware unless you have other vitamins to go with it, you could end up with it in your arteries instead of where you need it. You need vitamin D3 to help with the absorption of the calcium. You need zinc to help form the matrix upon which the calcium will be deposited and you need Vitamin K2-7 (preferably a 600mcg dose) which puts the calcium in the place where it is required and also clears out your veins and arteries.

It is also recommended that you take a magnesium supplement to help things along. There are various other supplements also associated with curing osteoporosis and I suggest you visit your library and read the book mentioned above which tells the whole story.

I had a risk of fracture of zero after a scan 6 months after beginning the above regime. The down-side is that to prevent recurrence of the OP. I will almost certainly have to continue the medication for the rest of my life (currently nearly 73), but my wrinkles and varicose veins have also reduced because of the K2-7.

Hope that this is helpful to you - if you have any question will be happy to help.

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While I agree with all the alternative options you list - AA does NOT cause "brittle bone disease". That is something else.

Refusing AA should only be on the basis of having had a dexascan and finding bone density is OK.

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Actually, PMRpro, I disagree. There is ample evidence that bone density can be less than "okay" and you can still maintain and improve bone density without resorting to any osteoporosis medication.

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I have been taking a tablet of Alendronate religiously every week for 20 years! I have had as far as I know no adverse side effects. BUT. I've Just had the results of a Dexa scan I asked for after reading comments about alendronate here. Doctor rang me to say I have osteoporosis and she has made an appointment with a rheumatologist. So as far as I can see 20 years of Alendronate have made no difference to my bone density! (I've been on 15mg prednisolone for pmr for 4 months but don't think this can have influenced that.)

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Yikes. So glad you've had no unpleasant side effects, at least as far as you know, But it must be so disappointing that the med appears not to have had the good effect either! Please let us know how your appointment with rheumatologist goes.

Yet another reason why people need to get those DXA scans!

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Did they monitor (and correct if necessary) your calcium and vit D levels? If they aren't right, all the AA in the world won't make a difference.

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I have been taking 2 Calcichew tablets daily for calcium and vitamin D. NHS gave me a Dexa scan every 2 years at first but after 3 scans said it was too expensive. Then I moved house and new docs just went on prescribing the alendronate. No more tests.

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Out of sheer curiosity do you remember if those first three scans showed any change?

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Sorry HeronNS, I don't remember results of my first scans when I first went on Alendronate. Possibly because at the time i thought doctors didn't tell patients results - and I don't even remember being told them. Now is different. I still haven't heard from the rheumatologist to whom my current results have been sent, but will certainly find out when I see him/her.

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Hi PMRpro, Yes I agree that the condition generally known as Brittle Bone Disease is an inherited condition that usually affects the very young but the bisphosphonates give similar adverse effects if taken for very long.

AA should be just a very temporary state of affairs and has a very low success rate with lots of nasty side effects. The answer given in the book is very significantly superior and worked for me and many others.

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Dear Aristotle, I hope you don’t mind me saying but telling people that refusing Alendronic Acid is the best thing they could do, is not a good idea. We are not medically qualified or know their medical history. It is fine for you to say that you were or were not not personally happy on the other hand.

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I suggest that you read up on the processes and study the bone replacement mechanism that AA interferes with. This process normally prevents bones becoming brittle. AA stops the process and the bones become brittle and will eventually break. AA does not cure osteoporosis it merely leaves you with old brittle bones.

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Aristotle, that is probably true, but people have to reach this conclusion in their own way in their own time and in the context of their own condition. I think there is a case to be made for people who do indeed have very serious OP to take an OP med for a maximum of two years, in rare cases three, but no more, to give them time to get the "natural" system into place. I personally wouldn't take them, but then I don't have OP nor have I fractured any vertebrae. I also think it a very bad idea to take the OP meds without also doing all the "natural" things (diet, supplements - beyond calcium and D, appropriate exercise). That's like giving a diabetic insulin without making sure they also eat properly and exercise to control their blood sugar.

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Dear Aristotle, I am very aware of what has been written and I have actually been speaking with one of the researchers about it. You misunderstand what I am saying, like you I am very anti Alendronic Acid, but it is your wording. It is not up to us to tell people people that refusing Alendronic Acid is the best thing they can do. If they want to read about it or people want to talk about how it affected them that is fine.

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Peop;e can make up there own minds but I know of many who have refused AA and gone down the path that is laid out in the book mentioned and not one of those persons has any regrets. You don't have to medically qualified to make a decision given the relevant facts, especially if there is help from a doctor available, the book in question being written by a well qualified Canadian doctor.

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I happen to think the book about Vitamin K2 is terrific and I recommend it highly, but Kate Rheume-Bleue is a naturopathic doctor.

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Aristotle, can you share your consecutive t-score results? That would be of interest to us and lend support to the ideas you and I express here. (For the record anyone who doesn't already know, I think everyone must by now, my t-score improved from -2 to -1.6 after less than one year on a regimen like the one Aristotle encourages.)

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Results are as follows:

Spine, T-Scores:

Previous L1 -2.2 Current -0.9

" L2 -1.0 " -0.3

" L3 -0.4 " -0.1

" L4 -1.7 " -1.1

Right Femur, T-Scores:

Previous Neck -0.9 Current -0.6

" Wards -2.3 " -2.4

" Troch -0.4 " -0.3

Left Femur, T-Scores:

Previous Neck -3.5 Current -1.2

" Wards -2.6 " -2.6

" Troch +0.6 " -0.1

No longer are there any risk factors and the risk of fracture is not measurable.

So, in one year, the BMD measured at Femur Neck Left has gone from high risk (T-score -3.5) to moderately low (T-score -1.2).

Whilst some of this is due to my lifestyle, the majority is, I believe, due to the Vitamin K2-7 which at least puts the calcium in the correct place.

My doctor is now concerned that I am taking too much Calcium and has recommended stopping this and just having the vitamin D3 and Alendronic Acid (AA). He doesn't know about me stopping the Alendronic Acid in favour of the Vitamin K2-7. I choose not to tell him since he pooh-poohs the use of supplements that he hasn't suggested. I do still have some oesophagus problems from the reflux that happened when I was taking the AA The main problem seems to be that the cartilage that close off the lungs doesn't function as well as it used to and liquid can seep down into my lung area if I'm not careful.

Anyway, having no longer got osteoporosis, I shall probably tell the Dr. that I no longer will take AA but will maintain my current life-style and supplements. Since I have very little calcium other than the Adcal-D3, I shall continue to take these but less often - I'll try every other day at first and see how I get on. I can always go back to the Dr and request a calcium level check. I am relying heavily on the K2-7 to keep my arteries clear of calcium and other plaque.

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Aristotle what was your dexa scan before beginning the regime?... so glad it improved after! Would love to know the numbers.

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yogabonnie, I have tried twice to give some details but I haven't a clue where they ended up = sorry.

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They are on here, just after my version of the question! Very interesting and encouraging. You must be so pleased. Will you ever tell your doctor you discontinued the AA almost before you started it?

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Hi HeronNS, I am incredibly pleased - If you hadn't pointed me to that book, who knows what the future may have been!

I'm not certain that there is any point in contacting my GP since he will be able to see that there haven't been any prescription requests for AA in a very long time and he does review mdeication once in a while. I haven't spoken to him in nearly two years and can't say that it bothers me.

I do find it difficult to accept that many people will only follow blindly what is being done to them, without trying to find out what is really happening or trying to find alternatives. The K2-7 is also helping my wife with clearing her veins & arteries. It really does seem to be rather a wonder drug for some things.

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