Alendronic Acid, Fosamax...To take or not to tak... - PMRGCAuk

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Alendronic Acid, Fosamax...To take or not to take was my question.

Insight329 profile image
9 Replies

So, you’ve been diagnosed with PMR and/or GCA and your doctor has prescribed something for your bone health: bisphosphonate, Alendronic Acid, Fosamax... Mine did, too - he prescribed Fosamax before I even had the Dexa Scan scheduled. (I think this may something doctors do automatically: Patient will be on Prednisone, start AA – check box.) I started Fosamax without asking any questions as I assumed I needed it. Lesson learned: NEVER ASSUME.

To take or not to take bisphosphonates is a ‘hot button topic’ here and it’s discussed alot. Those discussions prompted me to dig to see if I did indeed need to be on it. This is what I did and found:

I got the results of my DEXA Scan. Then I tried to figure out what it all meant.

First, terminology:

DEXA scan: Dual energy x-ray absorptiometry. (x-rays the bones to calculate bone density.)

T-score: A number that represents how close you are to average peak bone density.

FRAX: a fracture risk score that is calculated to determine your 10-year probability of a fracture.

Categories of bone health (From the World Heath article referenced below):

-Normal (T-score -1.0 and above)

-Osteopenia, low bone mass (T-score between -1.0 and -2.5)

-Osteoporosis (T-score -2.5 and below)

-Severe Osteoporosis (T-score -2.5 and below with history of a fracture)

4bonehealth.org/education/w...

(Taken from above article):

Three major categories are defined as high-risk groups that should consider treatment with FDA-approved medicines to lower their risk:

1.History of fracture of the hip or spine

2.Bone mineral density in the osteoporosis range (T-score of -2.5 or lower)

3.Bone mineral density in the low bone mass or osteopenia range with a higher risk of fracture defined by FRAX score for

a.Major osteoporotic fracture 10-year probability of 20% or higher OR

b.Hip fracture 10-year probability 3% or higher

I then reviewed the 2017 American College of Rheumatology Guidelines for the Prevention and Treatment of Glucocorticoid-Induced Osteoporosis

rheumatology.org/Portals/0/... You’ll have to pull it up…too many words to include

Table 1 (Pager 1524) defined the categories of the FRAX Scores

Table 2 (Paged 1528-1529) gave the treatment recommendations

The next article I reviewed was New Wall Street Journal on Benefits of Bisphosphonates Outweighing the Risks for Many Patients.

nof.org/news/new-wall-stree...

From the article:

Timothy Bhattacharyya, orthopedic trauma surgeon and head of osteoporosis research for the National Institute of Health. “Bisphosphonates are absolutely effective…it makes sense to wait until you have a diagnosis of osteoporosis, and not take the drugs for more than five year.”

Robert Lindsay, Chief of Medicine at Helen Hayes Hospital: Osteopenia isn’t a disease, but merely an indicator that bone density is on the lower part of the normal range…..an awful lot of people in this category may never get osteoporosis.

The National Osteoporosis Foundation says if the risk is more than 3% for hip fracture or 20% for other major fractures, the advantages of treatment outweigh the risks.

This article also discussed the risks.

Next: From Practice Guidelines ACOG Releases Practice Bulletin on Osteoporosis:

aafp.org/afp/2013/0815/p269...

Treatment is recommended in women with a T-score of −2.5 or less. For women with a T-score between −1.0 and −2.5, FRAX can assist in making an informed decision about treatment. Pharmacologic treatment should be considered in women with a 10-year risk of major osteoporotic fracture of at least 20% or a risk of hip fracture of at least 3%. Treatment should also be considered in women who have had a low-trauma fracture, even if DEXA does not indicate osteoporosis.

So, what were my results?

Bone mineral density of the right proximal femur is 0.856 g/cm2 with a T-score of -0.7 and femoral neck T-score -1.6.

Bone mineral density of the left proximal femur is 0.804 g/cm2 with a T-score of -1.1 and femoral neck T score -1 .9.

Bone mineral density of Ll-L4 equals 0.882 g/cm2 with a T-score of -1.5.

FRAX score calculates the 10-year probability of major osteoporotic fracture 8.2 % and hip fracture 0.9%

I’m considered having osteopenia from my T-scores.

Looking back at the Wold Health Organizations recommended guidelines (4health article) my T-score was better than the -2,5 treatment recommended scre. In addition, my FRAX scores did not dictate that I needed treatment at this time: My 8.2% probability of having a major fracture is less than the 20% recommended for treatment and my 0.9% of a hip fracture is lower than the recommended 3% for treatment.

At this point I determined that I was going off of Fosamax. All of the information that I could find had the same guidelines for treatment (unlike Prednisone). But I wanted to have all my bases covered. I wanted to present an alternative treatment: The COMB protocol.

hindawi.com/journals/jeph/2...

Being conflict-avoidant, I emailed my doctor explaining why I felt that I did not need to be on Fosamax and sent the above to him. Fortunately, with no further discussion, he agreed that I could stop Fosamax as long as I was taking nutrients for bone health and doing weight bearing exercises.

I want to thank the members of PMRGCAuk for providing me with the references that I used. Also, a special shout-out to HeronNS for all of her work in the area of bone health and sharing it with us. (Check out her posts for ways to help keep bones healthy.) ...and to PMRpro for letting me know I had my acids wrong. :)

And in case you missed it (make sure you read the replies as more info.): healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Some history on how Osteopenia became a disease to be diagnosed. (You may be shocked.):

articles.mercola.com/sites/... Warning! Don’t take Another Drug Until You Read How You’ve Being Conned

npr.org/2009/12/21/12160981... How a Bone Disease Grew to Fit the Prescription.

Information on Fosamax: drugwatch.com/fosamax/

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Insight329
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9 Replies
shella profile image
shella

Thank you for all the in depth info....

my dexa scans are not so good and were always on the low side even before PMR and steroids - the doctors have been trying to persuade me take alendronic acid but I have read that it can effect the jaw which is a problem right now - I have read there are other side effects ...and dental work not a good idea while taking it .. I do take calcium D and magnesium and don’t want to be pressured into taking tablets that can have side effects.

HeronNS profile image
HeronNS in reply toshella

Add Vitamin k2 to your supplements, and if you aren't already take up some appropriate exercise. Food and exercise should be first line treatment, not the medications which I think should be reserved for the most critical cases.

shella profile image
shella in reply toHeronNS

Mmmm last scan showed hip -2.9 but spine was t score of 4 which also said severe .... bit scary ....steroids for 5 years probably didn’t help.....but concerned about jaw ache .... maybe I have no choice ?

HeronNS profile image
HeronNS in reply toshella

Have you checked with a physiotherapist about moves to protect your spine? That was one of the most useful things I got from a bones program at our local hospital.

shella profile image
shella in reply toHeronNS

Thanks so much will do that this week .....

HeronNS profile image
HeronNS in reply toshella

Except that the young woman in the video moves a bit too fast for the likes of us, this is good:

healthunlocked.com/boneheal...

That's the beauty of this forum. There is a range of support from virtual hugs, anecdotal evidence and good humour to refereed academic and medical journal articles, as well as national and international guidelines. It provides the ammunition you need to understand issues and how to make these clear to your drs Drs and rheumies. One could definitely create a research paper from everything on this forum that examines our coping strategies. 👏👏👏

shella profile image
shella in reply to

🙋😅

SheffieldJane profile image
SheffieldJane

What a useful post Insight329, thank you for going to all this trouble. Well done for taking such an intelligent and well researched decision for yourself.

Can you pin this post for future reference to help others with the dilemma?

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