Any advice on use of Alendronic Acid and Calceos

[Temujin]

I have just been diagnosed with Osteoporosis. I am female and 64 years old and a polio survivor. I have lead a full and active life and raised a family. Polio left me with weakened upper body muscles but apart from a couple of throat infections over the years I have had no reason to visit a doctor. Last summer I had a freak accident at home, tripping over a weight we used to hold a door open. It resulted in a fracture of my humerus - I have very little muscle around my upper arms/shoulders resulting from polio. Upshot of this break was a DEXA scan. Next my GP called to advise I had osteoporosis and that a prescription was waiting for me! Prescribed drugs are Alendronic Acid and Calceos - both of which have horrifying potential side effects. Due to Covid19 I can’t go to the surgery. No other information has been given! Has anyone on here been on either of these drugs for a long period of time? Are both of these drugs for life or time limited? Right now am reluctant to start in these. I don’t even know my DEXA score? Help!

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Please give a Royal Osteoporosis specialist nurse a ring who will be able to answer your question on the free land line number 0808 800 0035

[Fruitandnutcase]

You should still be able to speak to someone at your surgery on the phone. Does the hospital who dealt with your break and did your DEXA scan not offer a Fracture Liaison Service?

Like you I’ve just recently been diagnosed with osteoporosis, I broke my wrist in January, had a DEXA scan then I had a face to face meeting with the fracture liaison nurse who explained everything to me and I’m about to start on alendronic acid I’ve already started on calcium and D3.

I’ve also got a follow up telephone consultation with the fracture liaison nurse at the end of April to see how I’m getting on. If I have a problem there are other (but similar) drug options and there is the option of an annual infusion or injections.

I’ve been told that I will take both drugs for five years then be reviewed.

I think it would be worth speaking to someone at your surgery - even if you can’t get to see someone face to face a telephone consultation would be better than nothing.

Plan what you want to say and write your questions down before you start then you should be able to get the answers you need.

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I've been on AA since November. No side effects! Start taking it with an open mind and see how you get on.

[DeannaAlphi]

Hi. I was diagnosed with Osteoporosis about 4 years ago. Wish I never had a dexa scan, it caused the worse fear and anxiety I'd ever had. Please take a deep breath and ditch these feelings by educating yourself. All a Dexa scan does is to compare our bone density to that of a healthy 30 year old. Of course our bones aren't as dense at twice that age. It's a condition not a disease. Our skin gets a bit more wrinkly and our hair colour often changes etc.

After extensive research, I decided not to take any medication. I know someone who took Alendronic acid for 15 years and she seems fine. I also watched my mother suffer necrosis of the jaw, which I'm told is a rare side effect of of the same drug. I did take calcium with vitamin d for a while Adcal. I started getting little lumps under my skin which a doctor confirmed was deposits of calcium. So I dont take that any more.

I've had 2 dexa scans which my GP would not even look at and therefore not discuss. I saw two specialists privately who reassured me that the scans weren't accurate and explained why.

We are all different and I would not want to influence anyone to take or not to take medication. I would encourage you to systematically spend some time reviewing causes and contributing factors of osteoporosis. Also what helps our bones. Make lists of what applies to you. For example, for me I took presdinerone steroids long term for asthma. Also I drank a lot of fizzy drinks and I never ate "my greens." I cant change what I did in my past but I have changed my diet , exercise and lifestyle. It's a bit like the AA sobriety prayer. Change what we can and accept what we cant. I was very angry for a while at medications I had taken without knowing the long term side effects. Now I realise those negative feelings are not good for our bones.

I'm nearly 66 and more afraid now of the new virus. I wish you the best of health. Take care.

Dido xx

[Temujin in reply to DeannaAlphi]

Thanks, from what I have seen I need to speak to some specialists and ask a lot of questions. I have only lived in my current house for 2 years and have never met the doctor, he certainly would not have any knowledge of the polio! With CV being main focus at present appointments are likely to be a way off, as

I am self isolating but I can start with some phone calls!

[Heather9 in reply to DeannaAlphi]

Thank you for posting such a thoughtful and well-balanced reply to Temujin.

I have been on AA and Adcal for 2.5 yrs now, so only half way through till my 5-yr scan and I am one of the lucky ones who have not re-acted badly to this medication (fingers crossed!). I sometimes wonder whether this forum, and no doubt other similar health forums, get a much bigger input from people who are generally opposed to medications. I too would never want to influence anyone else's decision regarding whether or not to take medication.

The AA prayer has also been of great comfort to me from my earlier days (via Al-Anon who use the same 12-step programme) and I still find it very calming.

Best wishes to you and every single person on this forum, it's good to have so many people caring and sharing in these uncertain times,

Heather

[veriterc]

I've got Osteoporosis and am a Polio Survivor. I've found that one condition can impact on another, and you need to make sure your doctors are fully up to speed. Insist on discussing this with your Polio Consutant as well as your Rheumatologist - it you aren't under a good consultant now is the time to make a fuss and DEMAND ! Certainly contact the marvellous nurses at the ROS, and also the Polio Survivors Network - Hilary Boone is a mine of info, and it's free to join if you aren't a member. But you need to ask a lot of questions, as research from abroad has come up with lot of new info about interaction.