Newly diagnosed! Help 😱

[Deee64]

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

[Kaarina]

Hi Liverbird

If you could let us know what your dexa results are I am sure this community will be able to help you. {{hugs}}

[Deee64 in reply to Kaarina]

hi KaarinaThanks for your reply, feeling overwhelmed by it all!

Iv got no results at moment cos couldn’t attend outpatients appointment, I shall get in touch with doctors on Monday see if they have any info for me xx

[Kaarina in reply to Deee64]

Hi Liverbird, If you have not had a scan, why have you been prescribed AA and Adcal3? Have you fractured?

[Deee64 in reply to Kaarina]

Ye, I’ve had a fractured hip but I have had a dexa scan but just haven’t had the results cos couldn’t attend outpatients appointment 🙄 hopefully doctors might be able to get the results for me x

[Kaarina in reply to Deee64]

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.

[Deee64 in reply to Kaarina]

Thanks kaarina, I’m going to do a bit of research today , got lots of spare time at the moment! don’t really want to take the alendronic acid but obviously need to do something.

Thanks for your help, glad I’ve found this forum it could keep me sane !

[AnnieW55 in reply to Deee64]

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

[Deee64 in reply to AnnieW55]

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

[AnnieW55 in reply to Deee64]

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 😀.

inspire.com/groups/national...

[Deee64 in reply to AnnieW55]

That’s definitely what I’m trying to do educate myself, sounds like your doing good 👍

Had lots of good advice today, just have to let it all sink in!

Thanks again

[Hidden in reply to AnnieW55]

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.

[AnnieW55 in reply to Hidden]

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?

inspire.com/groups/national...

[Hidden in reply to AnnieW55]

Yes, this is what we're talking on now. So did you start with PMR or go straight to get osteoporosis ??

[Strawberry40 in reply to Hidden]

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.

[Deee64 in reply to Strawberry40]

I actually take D3 once a day also Ester c, so was a bit worried about taking the adcal3 as well 🤷🏻‍♀️But would probably prefer to stick to my own vitamins , viridian, rather than taking the adcal3 🤷🏻‍♀️

[Hidden in reply to Deee64]

I take the Adcal am and my own D3 after lunch...giving omeprazole a miss for a while

[Kaarina in reply to Deee64]

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. .

theros.org.uk/information-a...

[Deee64 in reply to Kaarina]

Thanks again kaarina, I’ll have a look 👍

[HeronNS]

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!

healthunlocked.com/pmrgcauk...

[Deee64 in reply to HeronNS]

Thanks HeronNSWow, loads of info for me, you’ve done amazingly well, hope I can !

Thank you so much for your help

[Nanaedake]

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.

[Jennifer7 in reply to Nanaedake]

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

[Jennifer7 in reply to Jennifer7]

SeSame seed paste....don't know if it's just a greek thing!!Supposed to be very good for bone health...it's called Tachini here....

[Nanaedake in reply to Jennifer7]

Do you take vit D3?

[Jennifer7 in reply to Nanaedake]

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!!

[Nanaedake in reply to Jennifer7]

Lucky you! Keep standing at bus stops or maybe jog on the spot.

[Jennifer7 in reply to Nanaedake]

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

[Deee64 in reply to Jennifer7]

Oh no! That’s awful, but as you say suns still shining, although it’s not here!

Take care xx

[Jennifer7 in reply to Deee64]

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!! ☀️

[Nanaedake in reply to Jennifer7]

Poor you. Has the physio given you any exercises to improve core strength? Good core strength can help balance but you won't be able to do them until hip has healed. When I was on crutches I worked on upper body strength, seated and using light weights or resistance exercises.

[Jennifer7 in reply to Nanaedake]

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

[Nanaedake in reply to Jennifer7]

Worst thing was having to make cup of tea and stand to drink it because I couldn't carry it to a table when on crutches. Sounds like your physio is on the ball so that's good.

[Deee64 in reply to Nanaedake]

Been there nanaedake, cup of tea not the same when you have to stand !

Glad your ok Jennifer 7, good you’re on one level and you’ve got your verandeh, torture without outdoor access! x

[Jennifer7 in reply to Deee64]

Hello again...Please look at my answer to nanaedake!!! It will bring a smile to your lips! Stay safe.xxxxxxxx

[Jennifer7 in reply to Nanaedake]

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

[Deee64 in reply to Jennifer7]

I love my first brew in bed and eventually a thermos was the answer and eventually managed to get it upstairs! ...the simple pleasures xx

[JandoraKyani in reply to Nanaedake]

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

[Hidden]

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.

[AnnieW55 in reply to Hidden]

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.

[Hidden in reply to AnnieW55]

Just seen your reply Annie thanks...if you're running marathons you must still be relatively young then

[AnnieW55 in reply to Hidden]

I was 63 when I had my break, 65 now. No more running for me as leg/hip protests but I am now Nordic Walking instead along with tai chi, weights, general exercise.

[Hidden in reply to AnnieW55]

Well done you.

[Jennifer7 in reply to AnnieW55]

HERON NS is very knowledgeable...I have read all her posts and she has really helped me make what I believe to be the right decisions.I also follow an American doctor..Ken Barry..who said 'WHO would take a drug for osteoporosis when one of the side effects is a fracture of the femur?!!'

[Deee64]

Thanks for all your help , I really appreciate it,

I’m still should I shouldn’t I , only I can make that decision I suppose, but trying to get as much info as possible x

[Susie1955]

Hi have you got Aldronic Acod tablets or drink ?

I have taken both of them not together but for 5 years the tablet had a break for 2 years now on the drink xx

[Deee64]

Hi, Iv got the tablets , one each week . How have you found them?

[Hidden]

Why don't you speak to a specialist nurse on Osteoporosis on the free helpine 0808 800 0035. They are there to help.

[Deee64 in reply to Hidden]

Hi, I’m just trying to take all the information in at the moment , I will probably speak to them soon

Thank you

[Hidden]

Did you find "Save Our Bones" online? I'm so glad I found it, stopped the fear!