Alendronic acid: Hi I had surgery for... - Bone Health and O...

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Alendronic acid

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28 Replies

Hi I had surgery for breast cancer in September 2018.

After surgery they wanted me to take Anastrozole but after doing research

I said I would decide after DEXA scan.I got the result last week and I was shocked

when my doctor told me I had osteoporosis, she has given me a prescription for

Alendronic acid&calcium/cholecalciferol I started the latter a few days ago but

very apprehensive the former as it seems that it plumps up the bones but doesn't

make them stronger and as for the calcium I would appreciate some advice on that

because on some sites it's saying that the calcium is going to the wrong place.

I've never had a fracture and my body is quite supple I do pilates every day.

I'm 71 but consider myself a young 71.still work and travel a lot but now i'm scared of falling.Not sure what to do about the meds.

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28 Replies
Kaarina profile image
Kaarina

Hi there, do you have a copy of the DEXA report? You are entitled to a copy, just ask a receptionist at your surgery and they should be able to print it out for you. What were your results?

I had a chat with my gp and we agreed that I take in enough calcium through diet so I am only prescribed Vit D now. It is a good idea to have your Vitamin D levels checked as well. Ideally twice a year, in the summer and winter months as we do not store Vitamin D.

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

I'm going to call the surgery tomorrow to ask for a printout and also vit d blood test.

Don't think my GP will be very happy that I'm not taking meds and I think I'm regarded as a difficult patient as I have questioned everything since breast surgery and asked for a second opinion.

If they refuse to do vit D test twice a year can I have this done privately?.

Thank you for replying to me

Kaarina profile image
Kaarina

If you have a problem with your doctor allowing you to have a vitamin Blood test on the NHS then the past thread below will give you details of how you can have this done. You will need to scroll down quite a few of the postings to find the reply(s) from LynneH-19 who pays to have her vitamin D tested as her doctor is unapproachable with this request from her ;) healthunlocked.com/boneheal... Hope that helps.

In the end it is your decision and the doctor should not be pressuring you, but unfortunately some do this. I cannot comment as I have no idea of your t or z scores.

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Thank you I will look now.

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Hi kaarina.

I got printout and my T score is 2.5.and I have asked blood test for D levels.

Not sure what to make of scan print out and quite depressed at the moment.

I never fall so do people diagnosed with osteoporosis suddenly having falls?.

I'm holding off on the med not sure what to do.

Best wishes

Maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

Hi Maggie

Does this make it easier to understand your dexa report?

The DEXA scan gives you a number called a T-score. Your T-score represents how your bone density compares with that of a woman at peak bone density. Doctors use the following guidelines to interpret your results:

If your T-score is minus 1 or greater: Your bone density is considered normal.

If your T-score is between minus 1 and minus 2.5: You have low bone density, known as osteopenia, but you don’t have osteoporosis.

If your T-score is minus 2.5 or less: You have osteoporosis.

People diagnosed with OP do not suddenly start having falls. It is good if you never fall. I am fully aware that my balance is not so good so I can fall or trip every now and again. If I do fall, so far I have not fractured anything, thank goodness.

Why not give the nurses a call at the NOS helpline and have a chat with them about your dexa report and your fears. I have not called them but those that do praise them.

Call 0808 800 0035 - free from all UK landlines, mobiles and call boxes

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Hi Kaarina.

Thank you so much for your advice I'm going to call them and I will let u know what they say.

Best regards

Maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

Yes, please let us know, Maggie. It is a very positive thing to do today. :) If the lines are busy, keep trying. : ) Hugs

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Hi kaarina.

I've waited all day for a call from surgery about my request and only had

call just now 6 pm.

The doctor would not agree and will pass a message to my doctor who will ok it

or raise the question of why I want it. Actually, it does suggest this on my DEXA report

also I saw my osteopath this morning and he suggested it to so we will see what happens tomorrow and I will call the number you gave me.

today I kept the phone free for the call from the surgery.

I think because I've questioned everything since before breast surgery I'm regarded

as difficult. I had the scan because I refused to take Anastrozole because it thins the bones.

Will let you know what happens tomorrow.

Hugs

maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

Hi maggie

You are perfectly entitled to request a copy of your DEXA scan results as with blood test results too. It is good to file them away for comparisons if/when you have tests redone. Good for you to question everything. Hold you head up high. Knowledge is power. After all it is your body so why shouldn't you show a great interest. You are not being difficult, you are being sensible.

Speak again soon,

Hugs straight back at you. :)

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

hi kaarina.

Just a quickie as I'm on my way to work. I will have the blood test next week and nurse on helpline brilliant thanku soo much.

hugs

maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

I am so pleased that you called the helpline. I hope you feel more in control now, if you know what I mean. ;) It is good to know they are always there to offer advice/listen and this forum too. I wish you a great weekend. {{hugs}}

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Hi kaarina.

The nurse was brilliant and answered all of my questions so now I can make an

informed decision so yes I feel more in control.

for instance what I got from my GP was you have osteoporosis and this is your prescription but have any dental work done before you take.

That was when I began my research and doing so I found this site.

I've decided not to take the meds at this point because although they make

bones bigger they don't make stronger so I will try my way with lots of info.

Big thank you for your advice it helped soo much.

have a good weekend.

My next move is to find somewhere warm for March and increase my D vit.

Hugs

Maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

So pleased to hear that you now have a plan. Do remember that as we age we do not always absorb Vitamin D via sunlight as easily as when we were younger, although I have a feeling you are younger than me, if you are still working. ;) If you can get your Vitamin D levels checked ideally twice a year in the summer and the winter months you will be able to check how you are doing. Do keep in touch. :) You know where we are! ;) :)

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

yes I read that you must be in the sun at midday with no sunscreen for

at least 15 mins.

I'm 71 but still working as I have my own business(fudge shop)

and love to travel the world, I'm fairly fit and supple due to pilates

and lol still have an inner child and a sense of adventure hope that never disappears.

Yes I will always keep in touch.

hugs

Maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

Wow, you are older than me! You go girl! Good on you! :) I could not do what you are doing!

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Haha, u can do whatever u want really. What would u like to do?.

How old are you? and how did u discover ur diagnosis?

hugs

Maggie

Kaarina profile image
Kaarina in reply to fffffhhhhhh

I am 69 at the end of this year. I have lost just over 5 inches in height. I had a dexa in 2012 when I had only lost 3 - 4 inches and was diagnosed with op. My spine is in a sorry state so dexa readings of my spine are not at all reliable, so the last scan in August 2018 had to be taken from my hips and thigh? There I no longer have osteoporosis...I have bad joints and have had two knee replacements, and a revision total knee replacement, a cervical vertebrectomy, a total shoulder replacement and am now doing physio for a revision total shoulder replacement for the same shoulder performed in October last year. I keep as active as I can! There is nothing much that I would like to do, other that what I do now, except keep upright, keep walking and not to fall, which I do, every so often!

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

OMG Kaarina I'm so sorry you really have been through it all

and here you are on this site helping people like me.

so glad u answered my post.

i'm going to talk to nutritionist later today and will let you know what she says.

Do you take alendronic acid?.

hugs

Kaarina profile image
Kaarina in reply to fffffhhhhhh

I took Protelos, strontium ranelate and had no problems that I know of, with it. It was withdrawn last August so after my supplies finished, that was that! It is back again now as from last month. I wait to see what my latest blood tests are and the result of 5 x rays taken of my spine, a few weeks back and see what the consultant suggests I do. I took AA for a few weeks but it did not agree with me. I should give his secretary a call to remind him about my x-rays and blood test results.

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Hi Kaarina.

I wonder why it was withdrawnHave u googled it?.AA I think is a new drug

and has not been tested for more than 5 years.

hugs

Kaarina profile image
Kaarina in reply to fffffhhhhhh

I have a strong feeling that is was scaremongering regarding cardio vascular risks, strokes, etc and so it was not being suggested as an alternative by the doctors/if offered, patients did not wish to take SR because of the risks. Consequently, in the end, it was no longer a money maker for the pharma who produced it. My consultant firstly issued me with a blood pressure monitor to wear for 48 hours and as the readings were ok , he prescribed this drug for me. It was the only OP drug that I was willing to take. I had tried AA and risedronate previously.

fffffhhhhhh profile image
fffffhhhhhh in reply to Kaarina

Yes I think you are right I've read some of the posts on this and the big pharma

are not going to make if they can't make money

in reply to fffffhhhhhh

I've never had a fall, but still had fractures Maggie. They happened when I sat up in bed to get up. My DEXA shows I'm in the Osreopenic range.

fffffhhhhhh profile image
fffffhhhhhh in reply to

that sounds unusual that you are having fractures but not falling and not

in the osteopenic stage.what does your doctor say and are you taking meds?.

maggie

Kez63 profile image
Kez63

I feel for you! I am doing a lot of research on this at the moment and will continue to do so before I finally make up my mind on the issue but from what I have read so far, whether you take it as a supplement or up your calcium intake through food, you need to take Vitamin D3 and Magnesium with it. These two trace elements help the uptake of calcium to the bone and help to remove it from the organs, like the kidneys, where it shouldn't be. My reading leads me to understand that it is a lack of Vitamin D3 and Magnesium that is the most likely cause of osteoporosis because, without these two elements, calcium is leached into our bloodstream and organs rather than staying put in our bones. Vitamin K2 has also been cited as important, though from what I can gather, it best to get this through food, rather than a supplement. It is abundant in chlorella, a super green, which can be found in powder form in health shops and supermarkets (Sainsbury's and Tesco's sell it). I have also joined the gym and have got some great advice from a female personal trainer there, who has given me a great routine for weight-bearing exercises. I will also be doing Pilates, yoga and swimming. I am due to take my second dose of alendronic acid, tomorrow but I have had some really bad side effects, this week and I am very reluctant. I'm looking into ways to minimise my risk of hip fracture - there are some protective 'belts' that you can get from Amazon and other places. I'm not sure yet but I will need some convincing before I take that second pill! Good luck with it all!

fffffhhhhhh profile image
fffffhhhhhh in reply to Kez63

Hi Kez.

I also did research and continue to do so, it seems like alendronic acid makes the bones

bigger but not stronger.Doc also prescribed the ical-d3 tabs. I talked to the nurse on the

OS helpline yesterday this number was given to me by member Kaarina.

The nurse was really helpful, we talked about calcium and how you can take too much

and it can go to the wrong place in the body, she said to aim for 1000mg a day including

food intake.

I take supplements from a company called cytoplan these are in a food state

and were originally prescribed to me by the royal homeopathic hospital many

years ago so when they discharged me I just ordered from the company.

I'm going to talk to their nutritionist today about my calcium intake.

Yes D-3 is important and should be taken with D-3. I have something called

bone support which has both and is in a food state.I also take magnesium.

I've decided not to take the meds from the doctor. So glad I found this site.

Let me know if you discover anything else.

Maggie

fffffhhhhhh profile image
fffffhhhhhh in reply to fffffhhhhhh

Hi Kez.I've been using a site called green Med Info and today they published

a report on osteoporosis u can google if u like and take a look.

Maggie

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