How to refuse medication: I am new to all this... - Bone Health

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How to refuse medication

Markarska
Markarska
45 Replies

I am new to all this but was diagnosed with op after a dexa scan about a month ago. I had a fall on holiday in Portugal and fractured my ankle in 2 places. Missed my flight home but eventually made it 2 days later with leg in plaster and back to the wrong airport, this was in May. Then followed an operation to put plates and pins in my ankle and in plaster and boot for 12 weeks non weight bearing. When I was allowed to put weight on my foot again it was very painful. Lots of muscle wasting in both legs. I am now on physio and walk with a stick at present. My dexa scan showed T score of -2.6 in my spine -2 in hip and femur. I have been prescribed alendronate and take PPI tabs which I am weaning myself off now I know the problems they cause. I have inflammatory arthritis so weekly methotrexate injections. The thing is I don’t want to take these bisphosphonates and my gap is saying I can have an annual injection if the tablets don’t suit. I want to try with exercise and diet/supplements but both the gp and my rheumatologist insist this is the way forward. How do I say no? What have other people done ? I feel I am on enough meds and immune suppressants. I am 69 and the fracture happened on my birthday. First thing I have ever broken but after such a long road I am frightened of any future breaks. Feel very confused.

45 Replies
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HeronNS

Provided you have no "secondary causes of osteoporosis", that it's all down to age (sorry) and lifestyle, there is ample evidence that diet, supplements and appropriate exercise can help just as much and in about the same time frame as bisphosphonates. The only side effect being over all better health. Here is an interesting study.

hindawi.com/journals/jeph/2...

I don't follow the exact protocol, I think you'd need to be in a study in order to manage, but I have done a lot of stuff for myself and improved my bone density. So I will also link my story. Plus an article about tests that should be run before anyone is prescribed bone meds.

healthunlocked.com/pmrgcauk...

americanbonehealth.org/bone...

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Markarska
Markarska
in reply to HeronNS

Thank you so much for all the information which I will study closely. Did you have an adverse reaction from your doctor when you refused the medication ? I will take some time to think it all over and appreciate your help.

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HeronNS
HeronNS
in reply to Markarska

Her reaction was, I think, only concern for me. She is very respectful (as I am with her) and did not make any threats or anything like that. She told me what she felt I should do and when I said no that was it. She did seem more keen after she attended an osteoporosis workshop and I wondered who had been the sponsor, but never pressured me at all. And nothing has been mentioned since my second DXA scan where I'd improved without medication. I'm not saying doing what I did was easy, it involved a lot of work and paying attention, but now it's pretty much second nature, because I want to continue to improve, or at least stay the same!

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HeronNS
HeronNS
in reply to Markarska

I should say some of the links probably don't work any more. I really should go through them sometime and clean them up. The Vitamin K2 link, for example, is through Healthline now, not healthauthority, same article, different website.

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Markarska
Markarska
in reply to HeronNS

Thanks. I hope my gp will be as understanding but I have to be honest.

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Jumpey
Jumpey
in reply to HeronNS

Do you take DHA ?x

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Markarska
Markarska
in reply to Jumpey

I don’t . I take curcumin for inflammation, plus vitD and vitK. I am also taking calcium and vitD prescribed from the gp. Trying to eat a healthy diet with fruit and veg and starting tai chi classes which I used to do before the broken ankle. As I am on strong meds for the arthritis which suppress the immune system I feel this is enough. The only advantage for this drug is I have monthly blood tests to ensure no damage to blood cells and kidney/liver so if any sign of trouble I can come off them.

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HeronNS
HeronNS
in reply to Jumpey

What is DHA and what is it supposed to do?

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Jumpey
Jumpey
in reply to HeronNS

Docosahexaenic acid.It's mentioned in the study you posted about. I'm assuming now that you don't take it

X

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HeronNS
HeronNS
in reply to Jumpey

Apparently not! What is it supposed to do? Is this the COMB study? So long since I read it don't remember details - the point made is that non-medicine means help, and obviously in my case I didn't need to take anything out of the ordinary, not DHA, not strontium, although an argument could be made that these are "natural". I do take supplements, but nothing that I wouldn't find in my food, only I need extra. And I really think the exercise component is just as important. :)

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Jumpey
Jumpey
in reply to HeronNS

Yes the Comb study.

Yes I got the point about the non- drug route.I hadn't heard of DHA and just wonderedif you had taken it.x

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HeronNS
HeronNS
in reply to Jumpey

So you don't know what it does? When I looked it up it seemed to be something to do with blood pressure, cholesterol, and stuff like that. I don't at this point need anything like that.

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Jumpey
Jumpey
in reply to HeronNS

No I don't. X

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Marziano
Marziano
in reply to HeronNS

DHA = Docosahexaenoic acid is an omega-3 fatty acid that is a primary structural component of the human brain, cerebral cortex, skin, and retina. So it is supposed to support brain function and eye health.

I take omega 3 with EPA and DHA these are supposed to reduce inflammation in chronic conditions.

For benfits

ncbi.nlm.nih.gov/pmc/articl...

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HeronNS
HeronNS
in reply to Marziano

Thank you. Sounds interesting. May look into it.

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Met00

So sorry to hear you had such a nasty fracture, and what a horrible birthday present that was! It's such a shock being diagnosed with osteoporosis, and so difficult to decide whether or not to take meds, particularly if you've already fractured, but ultimately it's your health and your choice/decision. There's no rush to decide - a few months won't make any difference, as bones don't change quickly. There's loads of information on the internet, although it can be very confusing! It's worth being aware that, although meds will reduce your risk, they won't guarantee to stop you fracturing again; but likewise, while some people have great success with a more natural approach (diet, exercise and supplements), others continue to lose bone density despite all their best efforts. Did your GP run tests to look for any underlying causes for your osteoporosis (eg low Vit D levels, hyperparathyroidism)? If not, it would be worth going back and asking to get your Vit D, calcium, thyroid and parathyroid levels tested. There are people here who have improved their bone density without using meds, so hopefully they'll be able to give you some information. Equally there are plenty of people who take meds without any issues.

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Markarska
Markarska
in reply to Met00

Hi and thank you for the reply. I have been looking up lots of information on the internet and am taking supplements. My vit D and calcium levels were normal but I have been given adcal which I don’t mind taking and I already take vitD and K2. I think I want to try without the meds but wonder how to put this to my gp and consultant. Thyroid is ok apparently. I really appreciate your reply and will give it all some thought.

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Nanaedake
Nanaedake
in reply to Markarska

One thing to consider is that if you try oral Bisphosphonate tablets such as Alendronate or Risedronate, if you have side effects you can just stop taking them. It takes 6 months or so for them to start working. There is no guarantee that diet, supplements and exercise will help but you can always do that alongside trying the Bisphosphonates and then if the tablets give side effects you can just carry on with the other methods. It's hard work to have an effective routine to counter low bone density and there's a chance you'll be fine with the tablets. So you don't necessarily have to start by deciding one over the other. You could run them in tandem and see what works best for you.

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Markarska
Markarska
in reply to Nanaedake

Thanks. I may try the tablets but as I have bad acid reflux - hence the ppi tablets I am weaning myself off, I was concerned about stomach problems and wanting to protect the oesophagus. I think I will try a dose or two but if unsuitable I don’t want to go onto injections.

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Nanaedake
Nanaedake
in reply to Markarska

Yes, I see. It might be best to sort the gut out first. Have you ever tried Kefir? It's very good for gut health apparently. I make my own. You have to start with very small amounts and then build up to drinking more. I know how you feel about the injections or infusions.

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Markarska
Markarska
in reply to Nanaedake

I have tried kefir in the past but may give it another go. I use a pre biotic and try to eat little and often. Have cut out alcohol and spicy foods or fatty foods so hoping this will reduce symptoms. I will try slippery elm too.

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Nanaedake
Nanaedake
in reply to Markarska

You might prefer kefir as a smoothy if you didn't like the taste, you could mix it with fruit.

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Titian8

Hi Markarska,

I also experienced a fracture (although not as major), as my break was a Colles wrist fracture in winter 2018, had surgery with pins and plate inserted but alas still weak with loss of movement even today.

I also stopped PPI's after too many years of daily use, which we now know can cause osteoporosis, and instead use Slippery Elm which is just as effective (capsules are easier to take than the powder form).

Both hospital OP nurse and GP recommended drugs immediately even though my dexa scan results about the same as yours, which I don't think are too bad? I just repeatedly said no thanks, as simple as that.

It's my body, my choice and it was accepted right away and no attempt was made to make me change my mind (nothing would have). The doctors cannot insist, what you say goes.

I had researched beforehand and would begin with a natural route of exercise, diet, supplements etc. Then through the recommendations on this forum I learned so much more. Both of the aforementioned had never even heard of K2 !! which we are now aware is one of the most important Vitamins.

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Markarska
Markarska
in reply to Titian8

Thank you so much for your reply, as I feel we are in similar circumstances. My fall was outside on hard ground and I went over on a high shoe(now resigned to flat shoes) I broke the ankle in two places. I have done a lot of research and think these drugs are like a sledge hammer to crack a nut.

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veriterc

Poor you. Pity you weren't able to stay abroad and see how they treated you (did you read the headlines last month about our poor cancer care? Lymphoedema came into this). But you might like to try hydrotherapy. Not only is it good exercise, one can do more because it doesn't matter if you fall, but exercise in warm water is excellent for arthritis.

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Markarska
Markarska
in reply to veriterc

I did attend hospital in Portugal but was relieved to get home as after the operation I wouldn’t have been allowed to fly so I can’t complain about the operation here or follow up treatment. More concerned about the treatment offered for the op. I will look into hydrotherapy so thanks for the suggestion.

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Kathleen22

Just say no. I have and they stop asking. My tscores are a lot worse than yours as well. Was the break justified by the type of fall?

No one can force you to take the meds which are not good ones.

I believe they do more harm than good.

Just say you will do the natural route and be emphatic. Let them see the results after a year.

Your tscores are actually not bad at all. I wish I had that result.

Check your calcium and vitamin d levels in your blood tests. Look at taking some magnesium and definitely take vitamin K2 which is the one I consider the most important after checking levels as mentioned.

Make your food count with lots of veggies and fruit, yoghurt, bony broth, etc.

I am older than you at nearly 75.

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Markarska

Thank you. I am unsure if the ankle breaks were to do with op but because I had a fracture I was sent for the dexa scan . I am weaning myself off ppi tablets which my gp and consultant agree are a problem - pity they didn’t tell me that before...I will be honest with the gp and hope he will understand. I do take K2 and starting tai chi next week hoping my ankle holds out as still having Pysio. So grateful for all the replies on here and feel more positive.

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2019pro
2019pro
in reply to Kathleen22

Thank you for your information! My doctor also keeps trying to talk me into taking the Prolia. I don't think my scores are that bad either. I would like to try to do something more natural prior to taking that shot. My mother has taken it and has has bad reactions every time she is 84. I am 64. I just had some blood work this past week and we'll find the results next week. I am hoping that everything is good I. E. Cholesterol, D3 Etc.

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karmel

I am in the same place as you I want to stop taking Risedronate. Every practitioner I have seen dr, physio, dentist, 4 ophthalmologists (I have dry eyes because of an autoimmune disease, Sjorgren's Syndrome). All just dismiss my concerns of the side effects and stress that I have to take op drugs. Frankly they all seem to be wired in the same way and programmed in to telling you however bad your side effects ae you must keep taking your op drug. I am as equally frightened to take them as not to take them because there is much pressure from the medical field to continue taking them.

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Markarska
Markarska
in reply to karmel

I understand your dilemma. I have watched a You Tube video by Dr Ken berry on osteoporosis and it was very interesting. Worth taking a look at. Thank you for your response. What a minefield it all is.

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DeannaAlphi

Hi. The dexa score is a comparison of your bone density to an average 30 year old. Would you expect it to be the same? When I realised this, it took away my anxiety about it all. Hope it helps you too. My spine is minus 4.7, I take no meds. Did take Adcal for a while. Stopped those when had a calcium lump grow in my ear. Easy to get enough from calcium from diet. Extra magnesium is a good idea, best absorbed through the skin. I put magnesium flakes or Epsom salts in my bath. Simply told the medics I have done my research and have made an informed decision to help myself using natural methods. If you tell them in a positive way, they're more likely to respect your decision. If you act as though you are unsure, they will likely try to persuade you. Our medics are trained in medication, and many believe it is the way to go. They truly want to help us although the research and experiences of people like us on this site is not part of their training. Huge thankyou to all on this site who have helped me, plus the National Osteporosis Society who moderate this site. Good luck to you. Try not to worry too much, it's not good for our bones. Dido xx

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Markarska

Many thanks for this. I am definitely growing more confident in making my decision now and appreciate your help . I will get Epsom salts for the bath too.

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Titian8
Titian8
in reply to Markarska

Just to say I buy a 10kg tub of Epsom Salts from Amazon. It cost me £11.90 last time, which is much better value than the small packets available in most shops.

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Markarska
Markarska
in reply to Titian8

Thanks for that.

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HeronNS
HeronNS
in reply to DeannaAlphi

I totally agree. We are told that there is no way to increase bone density without medication, but there are more and more people showing that this is a mistaken belief. Now to get the evidence before the student doctors....

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sweetsusie

Markarska - Just say no! They cannot force you to take these awful bone meds. I have osteoporosis, too...but I refused to take anything after my experience with Fosamax. My doctor recommended Reclast...forget it! I wouldn't touch any of these bone meds with a 10-foot pole...they should all be outlawed!

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Markarska

Thank you. The more I investigate, the more I am determined not to start them. Have you managed without ?

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Mamaandme

I, too have a terrible dexa T-score, much worse than yours. I have read most of the comments here, and like many have refused meds, infusions, etc. as doctors have recommended for about 5++ years. I try to eat well, and take several supplements although need K2, which I am not taking presently. My doctors do seem to "imply" the Prolia is "for my good" and that they have no patients with side effects. I go back for my yearly in November, and once again I will just say "No, thanks". Blessings to all who have also been courageous in declining these possibly dangerous drugs. I am soon turning 74.

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Filistines

I understand your hesitancy around how to manage saying "no" to meds you don't want from a doctor who believes it would be for the best. What helped me in similar circs was to have been sure myself that I wouldn't take them when I spoke to the rheumatologist. She did indeed go through every reason she thought that I should and I gave every reason I had for not taking them. In a way, if I had been hesitant, she would have been remiss in not going on about the benefits as she saw them. Just be clear and respectful and you are more than likely to get a positive response. Best wishes with it :-)

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Markarska

I will do that. I have to report to the doctor how I have got on with the tablets so in a couple of weeks I will let him know I have decided against them or the injections. Thanks for the advice, much appreciated.

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HeronNS
HeronNS
in reply to Markarska

Here's a bit more literature to help you with your doctor:

ti.ubc.ca/2012/01/24/a-syst...

ti.ubc.ca/2011/02/23/bispho...

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Markarska
Markarska
in reply to HeronNS

Thanks that’s useful.

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Filistines

Also, it may help you to know, when it was noted that it was my decision not to take the meds, the rheumy arranged a blood test to get a baseline for resorption rate. While I waited for this test the rheumy came and found me and asked if I would be willing to complete a review of my consult with her for the 5yrly GMC records. I did this with pleasure and it seemed to me evidence of mutual respect. I believe you will get a similar response if you put your case exactly as you have here and as I did: my current quality of life does not allow me to take a risk with a medication that may possibly make me feel worse. Best wishes

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Markarska

Thanks interesting . I have been reading a lot of studies and looking at stats etc so feel better equipped to state my case. Thanks.

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