Hi, newly diagnosed with osteoporosis, was supposed to attend an outpatients appointment but cancel due to the Coronavirus, so just got my diagnosis in the post and prescription for adcald3 and alendronic acid, would obviously prefer not to take and go down the nutritionist route but don’t know where to start with this, any help would be gratefully appreciated
Newly diagnosed! Help 😱: Hi, newly diagnosed... - Bone Health
I am sure that you will be able to get a copy. You are entitled to see your results.
I take magnesium glycinate, boron (unless you like eating prunes daily!) and K2. I am prescribed VitD3 but the gp and I agreed I have enough calcium in my daily diet so no need to take a calcium med. I am happier doing this. I walk and exercise daily and do a little tai chi at home as well.
If you plug K2 into the search facility you will be able to read postings about this.
I was given adcal and alendronic acid after breaking my hip. I think it’s standard in the U.K. I already knew I had osteopaenia (found out a few weeks before the break). However, my break was classed as a high impact trauma, not a fragility break which makes a difference.
I would suggest you get your numbers and a copy of your scan. Some people have had to push to get the copy, if it happens don’t be fobbed off because that info will help inform your decision.
Look at your diet to see how much calcium you are getting normally (not just dairy, there’s a whole host of other ways of getting it). I was prescribed 2adcal a day which gave me 1200g of calcium before any I was taking in with food - far too much. Apparently the body doesn’t absorb more than about 500g at a time. I only take a half tab occasionally when I know I have come up short on the day.
Don’t feel overwhelmed. There is generally time to take stock, and gather information before embarking on medication. If this was your first break, it may be that medication isn’t needed straight away (just an opinion on this last bit, I have no medical training).
Ask questions as they occur to you
Thank you AnnieW55, that’s really helpful .
Have you been taking the alendronic acid, if so , how have you found it?
I am feeing very overwhelmed at the moment! And very scared , will take a bit of time to come to terms with.
Not the best time for it to happen as I might struggle getting info at the moment, with the pressure the nhs is under, obviously there’s bigger things going on but I’ll give it a go on Monday
Thanks again for your help
I understand your fears but do take a deep breath and stay calm. Kaarina has given you some good advice. There is plenty of help around. Once you have your result information you will know more about what you are dealing with and can ask questions, like are there any underlying causes that can be tested for? Did you have an early menopause, was it a fragility fracture?
The best thing we can do is educate ourselves.
I took the Alendronic Acid and the Adcal as they were in my bag of goodies (medications) when I left hospital. I took them because that is what you do isn’t it? However, I began to read around, found this site and the American one which is part of the Osteoporosis Foundation - link below - and I stopped. As I said my calcium intake is generally sufficient. I stopped the AA as I had visual disturbance side effects and my GP agreed I should stop. Have to stress I “only” have osteopaenia, for now, not osteoporosis.
My vit d level was also ok so now I take a vit d3 tablet to keep it so. I do take other things too, pretty much the same a kaarina. But my posts are too long - I get carried away 😀.
I too have been told to take the Alendronic Acid Annie, and that was back in Dec 2019....so far not taken it but rheumy keeps asking me if I have...told a white lie the other day and said yes I have started it. However, I am taking the Ad-Cal with K2 and I've been taking Vit D3 for years, before diagnosis of PMR, Those AA tablets don't seem to be good according to possible side affects.
To be fair all drugs have possible side effects and not everyone gets them. I got one of the “rarer” ones. I used to be a “take what is given to get you better, Dr knows best” person - until I realised Dr doesn’t always. Having said that I have been very lucky with my health🤞and never needed ongoing medication thus far. Now I educate myself as much as I can.
I find this site and American Osteoporosis Foundation forum amongst others useful. Are you on the HealthUnlocked PMR forum?
how much vit K2 mk7 100 micro grams (ug) should be taken each day tobe beneficial? the box says 1 per day but I wonder if that is just the bare minimum that is recommended by NHS. Their levels are always too small for it C & D so I take a lot more.
I have stopped the Allendronic acid a I suffered with a lot of heartburn and other problems with gas ( in both directions) which was very unpleasant. The calcium from veggies is supposed to be much better for you than dairy as the body copes better with the smaller molecules of the veggies than those of dairy products.
There is the ROS information to take a look at as well and if you are in the UK you can call their helpline for free. People who have done this are full of raise of the nurses who take the calls and find them really helpful. .
Have a read of my story. It's a few years old now but it is what I did at the time and it helped, so that at least isn't out of date!
I take ADCAL without problems. I didn't get on with Alendronic Acid but I had Risedronate instead for a couple of years. I started with gentle exercise and built up. Took K2-MK7, eat 6 prunes daily for the boron and good digestion, food quality vitamin C and eat a good gluten free diet. I can't say what helped except that I have gone from Osteoporosis to osteopenia in 2 years and I'm 10 years post menopausal, not on HRT. So do everything you can to improve bone health, it makes a difference.
Hi...I am doing exactly the same as you!I had four Prolia injections before I discovered this site and stopped them with no horrible outcomes thank God.
I must have been taking too much calcium in my diet as I had high urine content in my 24 hour urine test so stopped calcium tabs and now take vit K2 MK7 and eat 6/7 prunes a day..eat fresh sardines twice a week...spinach...sedame seed paste.....sit in the sun whenever possible (living in Athens that's quite easy)and just hope I'm doing the right things...at least I'm not frightening myself to death with all the side effects of that awful drug!!!Good luck to everyone.......we can only share experiences and hope for the best.xx
Νot at present...My endocrinologist gives me six monthly blood tests and for the past two years she said I haven't needed vit D3....I used to take it but I've just looked at my last blood test and I was at the top of the normal values so I think all the standing at bus stops I do must ensure I get enough sun!!
Well....now being nineteen days in the house I decided to put my trainers on and walk up and down the corridor for twenty minutes T. time..After the first time I went into the living room.... something happened and my trainer somehow stuck momentarily to the carpet!!!(a physiotherapist who came said he's heard of it before)....I fell onto my hip replacement side...,.LUCKILY ....I didn't break anything..WELL .MAYBE hairline pelvic fracture ..just needs rest to heal ....so now on crutches in isolation......! haha.. But the sun is shining...I can manage to get to the kettle!...and thang goodness for internet and things like this friendly forum.Stay at home . Stay safe.x
It certainly makes a difference to see the sun and of course go out on the verandah and know you're getting some vitaminD!! haha..an important factor in all our lives but especially for us on this forum!Thank goodness for technology too...being able to communicate like this ..it's marvellous.Stay healthy ..stay indoors!! ☀️
Yes...simple things to do now and then after twenty days he will come again and give me the muscle strengthening ones..It's so limiting...takes so long to get things done. I had the new method hip replacement surgery so didn't go through the pain and restrictions of the old method and this is a bit of a new experience for me...nobody can come and help of course.. but I'm comfortable here at home and on one level etc so I am very lucky...Take care.xx
I HAVE to reply straight away!!!! My biggest problem is drinking my coffee HOT while either in bed or in the living room!! I couldn\t believe you and Liverbird64 having the same problem as me!!!My lovely dad always used to bring us all tea and coffee in bed(in Manchester)and d'you know what...I have never got out of the habit.....I make my coffee and take it back to bed!! I have my breakfast in the kitchen but then the second coffee in the living room!! THEN I feel ready to start the day!LUCKILY for me the greeks drink iced coffee and put all ingredients plus ice cubes and shake it all up in a tupper beaker with a top on,,Well these shakers are taller than a mug so...I fill it two thirds and I can hold it with my finger in the remaining third and also holding on to the crutch... How about that! I'm laughing to myself as I write ....such a minor detail but SO important for my well being.! know you two will understand..XXXXX
I sprained my ankle when I was heavily pregnant with my now 28yo daughter & ended up on crutches. Being hopelessly addicted to my cups of tea, I got around it! I'd make my cuppa, pour it into a screw top jar and put that & my cup into my handbag which I'd hang around my neck & voila! Use crutches to get to the lounge, sit down and & pour it back into my cup
Hi Annie, from one Anne to another. Were you first diagnosed with PMR/GCA? Osteoporosis is supposed to be such a pain disease and once I was diagnosed with PMR last Dec 2019 I was prescribed both Ad-Cal and Alendronic Acid. He told me if I had a fracture it could kill me, so scares me not to take it. But like you I didn't managed to get to my Dexa scan this month due to Virus, so no idea of my Bone Health and seems daft to take a drug when there may be no need for it. I am taking the Ad-Cal twice daily and topping up with D3 and other supplements in between. This Forum is full of lovely ladies and helpful info. So welcome from one newby to another. Wondering if age come into it with getting osteoporosis and of course menopause women too...which many of us are past that.
Hi Staplehurst Anne 😀. Luckily for me I wasn’t diagnosed with PMR/GCA. Long story short(ish) In 208 I had a dexa which showed osteopaenia and a few weeks later broke my hip whilst near the end of running a marathon. I came out of the hospital with the usual meds including Adcal and AA. My fracture was classed as high impact and not a fragility one. After lots of research on here amongst other places I stopped the AdCal, had reaction to the AA and stopped that with GP agreement.
You’re right about age coming into it (menopause sees a big drop in bone health for a good few years afterwards) but there are many other factors too such as dietary history, medicines history and hereditary factors. There are other things to like hyperparathyroidism which is different to thyroidism.
Look back up this thread to the post by HeronNS, she has posted a link about her journey that you might find useful as she has PMR. At one time I would have taken the drugs/information given to me by my GP as I thought they knew best but now I read and learn so that I can make my own informed judgements.