Log in
Bone Health
1,811 members626 posts

Just diagnosed

I am 66 and Following fractured knee and t7/t8 compression fracture in back have been diagnosed -4.2 in spine. GP on diagnosis suggested bisphosphonates. I ďont like taking drugs and they have never agreed with me also the side effects sound alarming. Am going to see another GP in a week to discuss and meantime have been reading loads. I walk daily and am taking Osteocare plus Vit K and prunes and am thinking of going down the natural route with diet. Am I being unrealistic with a score of -4? Am trying to stay positive but this is so much to understand and deal with.

26 Replies
oldestnewest

Hi Bolelyn,

It does come as shock when diagnosed with OP. I believe most of us will agree with you. I certainly do!

I cannot say if you are being unrealistic not taking OP drugs with your T score of -4.2. In the end we have to make up our own minds after collecting lots of information from various sites and forums that we trust and looking at the pros and cons and possible side effects of taking the drugs. You can always ask if you may have another DEXA in say a year or two to see if your T scores have improved.

I hope the GP you will be seeing, takes an interest in osteoporosis and is able to help you with your questions and more importantly listens to you. Often GPS know a little about a lot. GPs appear to have to follow a set of rules and always offer bisphosphonates and a calcium/Vit D tablets like calceos or similar, in the first instance. Are you taking Vitamin K or K2? I have heard the latter is better for osteoporosis.

It is important to know your Vitamin D levels so you could ask him to arrange this for you. Levels can fluctuate depending upon what time of year it is ie summer/winter. Magnesium is quite a good supplement to take too. Exercise is also very important, preferably weightbearing. Walking is a good all round exercise.

I wish you well with your GP appointment. Let us know how you get on. :)

3 likes
Reply

Hi Kaarina

I find all your posts very helpful. I was diagnosed with OP back in August and started taking AA but stopped taking it in December. I want to try and improve my bones with exercise and supplements and diet. My Femoral Neck T score is -3.2, Lumbar spine is -2.9.

I had my first physio appt. yesterday, it was just an assessment and suggested exercises but I was referred to a once a week exercise class (for 6 weeks). She was quite helpful but said I should really take the AA as I was "at risk of fractures". I have never been on any medication and just don't want to take anything for two years.

I have age related arthritis in my spine as well!

I am 81 so do not expect to be as mobile or flexible as I used to be a year ago. I was still going to regular salsa and bachata classes and walking for about an hour several times a week back in May last year and hope to get back to that eventually. It has made me more conscious and careful when walking (so many broken pavements round here) as I don't want to fall over! I fell over in my garden, tripped on a piece of wood but luckily no broken bones just a few bruises,my nose took the full force and I ended up in hospital with a broken blood vessel and bruises to my face!

My GP was quite annoyed when I told him I had stopped taking the AA but I have read so many negatives things about it - but he didn't get it! I don't think he has read much about the subject -he just said NICE recommends it........

I had to ask him to refer me for exercises classes - he didn't even suggest it!

Reply

Hi DizzyDoll

Aw, thank you. You are very kind. :) I have a feeling that quite a few GPs say the same as yours when patients do not wish to take the OP medications which are recommended to us. In the end it is up to the patient to decide even if it may not be the best decision in their eyes. AA is of course the first OP drug offered to patients. I have had to ask doctors for blood tests and if I could be referred to an OP specialist. I know what you mean about looking where you are walking when out. I do the same. My balance is not so good so I have to be extra careful. I do not like to be out when it is dark, only because the street lighting is not good and it makes me nervous when I cannot see exactly where I am walking. I should take a torch but I forget!

I wish you well with your exercise classes. :) Do let us know how it goes. :)

Reply

I am in exactly the same position as you my spine reading is -4.2 don't want to take aa

But half of me is thinking maybe be I should from what my doctor son says re what fractures etc causes to your spine

Was supposed to start yesterday!!!

Reply

You could always try the AA, Lilact. You will soon find out if it disagrees with you. GPs will generally not budge from offering AA or similar to begin with as that is what they have been instructed to do. AA did not agree with me and I was put on Risedronate which again did not agree with me. I get the impression that if you do not try the AA and go back and say it does not suit you, you will not be offered anything else other than calceos or similar (calcium/vit D tablets). At the moment, to my way of thinking, none of the OP drugs appear to be very satisfactory but if T scores are low it may be a good idea to try it. It is a difficult decision to make, I totally agree with you on that one. The OP medication I was on (with no known side affects for me whilst taking it) was withdrawn last August. Grrhhh!

1 like
Reply

This morning iwoke to start aa nowhave put off til tmrw haha I have colitis so also worried about my stomach

But swaying towards starting tomorrow going to speak to help line today What are you on now if yous was withdrawn

Reply

Good idea to have a chat with a nurse. I am not prescribed anything at the moment although I was offered Prolia. I declined because one of the side effects is joint pain and I suffer with that daily anyway due to osteoarthritis. I discussed this with the doctor I see twice a year regarding my osteoporosis and he was in agreement with my way of thinking. My T scores are not so bad but I was "happy - as much as one can be taking medication" to take the Protelos. I am really gutted that it was withdrawn. My total T score is +2.5 but this figure is unreliable because I have scoliosis and degenerative changes in the spine. My total hip T score is -0.7 and neck of femur T score is -1.4. I have compression of L2 and have lost nearly 6 inches in height. :(

Reply

Kaarina, I was put on Prolia three years ago and when I asked sometime back how long I could take it, was told it was too new to know. Then when I had my injection last month, I was informed I'd been on it three years and it was recommended to stop after three years or I could start having the side effects. And I would have to go on something else. Will find out when I go back in June what else I can take, but none of the others work like Prolia.

Have read reports from the UK that when you stop Prolia, you have significant bone loss and lose the bone that was built and don't know if more than that. Wish now I'd never gone on it. Prior to that I had been on Fosamax that you could only take three years or it would start reversing the work it had done and I was on it somewhat longer.

1 like
Reply

Not enough is known about these drugs which is not at all good for us. We are the guinea pigs and my mums generation too. My mum was on AA for far too long but now one is given a drugs holiday after taking it for about three years. With Prolia my doctor told me one can suffer rebound vertebral fractures when ceasing to take it. Presumably one should begin to take another OP medication after stopping Prolia ....

1 like
Reply

Hi Karina I have just started Prolia was told by Endocrinologist I can only take it for 2 years . The side effects iv been reading worry me and it's only on the market about 5 years I think , but I was told I needed it I have severe OP and have fractured my pelvis both sides and my 2 wrists . It's a worry

1 like
Reply

I agree with you k_J53, it is a worry. The doctor I see for my OP twice a year mentioned that rebound vertebral fractures can happen after discontinuing Prolia. He told me this after we discussed the medication and I said I preferred not to have the injections because of the possible side effect of joint pain which I am already prone to daily being diagnosed with osteoarthritis. He said he tended to agree with my decision not to go down that road.

Reply

Gosh you were so wise I have had one injection and did discuss the worryingside effects he said he had 10 patients on it with no side effects I worries me Iv started but was told my OP was so bad I needed it . Best of luck and thank you for your reply

1 like
Reply

Hi, my spine is -4.2 too. It’s such a tough decision to know what to do when there is so much conflicting information regarding the osteoporosis drugs. At the end of the day you have to trust your own feelings and judgement once you’ve researched all the options. It’s scary living with the fear of breaking bones and doubting what you should be doing to help yourself but it’s important to be as positive as possible and enjoy life as much as we possibly can. Good luck with whatever you decide to do xxx

1 like
Reply

Yes for me every day I am in a Dilema have you reached your division susan

Reply

At the moment I’m not taking any osteoporosis medication, when I was diagnosed in 2015 and totally naive about osteoporosis and the treatments available I tried AA for about a month but it made feel very unwell. Since then I have worked hard to optimise my nutrition and increase my exercise but sadly this has not improved my bone density so far. I’m currently considering taking HRT but have not yet made a decision, I’m still trying to find more information about how successful HRT is in relation to improving bone density. Good luck with whatever you decide to do. X

1 like
Reply

I spoke to pharmacist today who also had the same opinion advice to go on aa as nutrition alone may not work

Reply

I have heard from more than one eminent specialist ( now) that diet and exercise alone cannot improve OP and maybe at best halt it. I was also told by my endocrinologist that getting too much vitamin D is also not good. So beware of going down the route of lots of vitamins just cos you think it's doing you good

Reply

I am not alone in having improved my t-score. I have, and I have a friend who has, and I know of at least one other person on the forums who has. The experts don't know everything. Good idea to monitor Vitamin D level. A very few people can get elevated Vitamin D. I did, probably because I have sarcoidosis. Easily dealt with by reducing my supplements. Most people will only activate the Vitamin D their body needs and I believe that normally it is very difficult to get too much Vitamin D. Think about it - does the sun poison us? Nope. It is possible to take too much calcium, especially if you don't also get enough of the things which help you utilize the calcium properly (like magnesium and Vitamin K2).

1 like
Reply
2 likes
Reply

Bolelyn are you getting back ach with that spine score ??

Reply

Fracture in August and brace since then. Was told in November I needed it until January but leaving it off and bending causes backache. Will have to be sensible and try a gradual reduction of wear.

Reply

I have -4.3 in spine been put on aa but I am wanting to go natural route I am taking calcium d3 prunes kefir

Don't know what more to take for my bones

I'm getting back pain tho

Reply

Perhaps you could look into magnesium and K2. It is also not only diet and supplements but exercise is very important too although this is not always so easy to do and maintain depending on one's circumstances..

Reply

Hi - i was diagnosed recently following fracture of L3 some months back. I was offered AA but I was also put off by the research I saw and rhe potential side effects. I have strated gollowing Dr Sarah Myhill advice on self treatment which includes red algae and strontium citrate along with L2 etc. I feel its worth a try! I'm also tryig pilates and tai chi. Dr Myhill has a website - she is an ordinary NHS GP with unorthodox views.

1 like
Reply

I will check the website thank you,like you going down the self help route.

Reply

Yes I know what you mean it's a lot to take in I've been diagnosed with it and gallstones as well on top of that I think I've got an Ulcer on my ankle right on a varicose vein

Reply

You may also like...