Posted , 8 users are following.
any good news about this drug? I'm now terrified about taking it. I'm a wheelchair user so can't help my bone density. I broke my hip recently so have been prescribed this drug. Any advice or reassurance out there? And how bad is a hip t score of -3.3? My spine was -1.9
0 likes, 32 replies
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kathleen65757 carol19895
Posted
How did you fall?
I am guessing you are taking vitamin K2 and doing everything you can with diet and supplements where they may be needed. You can check calcium and vitamin D in your blood tests.
If you are able to move much in your wheel chair there are exercises you can do. They may not be weight bearing but anything is better than nothing.
Are you able to walk at all and is the wheel chair temporary because of your hip?
I will not take AA but you have to make the best decision for you.
Do not make a decision until you are happy with that decision though!
carol19895 kathleen65757
Posted
Thanks. Couldn't sleep as I'm so worried. I've had MS for 17 years and have been in a wheelchair when I go outside for 10. I have muscle weakness on right side. Always thought I was very healthy apart from MS so the half hip replacement and this news about oesteoporosis has come as a real shock. Was going to start taking it this morning but not so sure now. Is there an alternative? What happens if you don't take it? I'm now taking Calcium and Vit D tablets but will that be enough with my T Score? I lost balance and fell on the laminate to break femur. Wouldn't have known anything about my bone density otherwise. My doctor said I'd be on it for life but reading that I shouldn't be. is " try it and see" an option or does it stay in your system for years as soon as you start taking it? So many questions!
kathleen65757 carol19895
Posted
I have a genuine concern about the drugs but would not judge you if you chose that path.
There are some other possibilities which people who have tried those will offer.
Try vitamin K2 as it aims the calcium onto the bones. Diet-wise, have bone broths, leafy greens, prunes, skin of cucumber and yoghurt.
People are having success with diet and excessive but I understand the latter is not easy for you.
Anhaga carol19895
Posted
Latest recommendation suggest that AA should only be taken for two or three years. In the past certainly people took it for years and years but now the bad effects are becoming more widely known, and they certainly do increase the longer one takes AA.. Denosumab (prolia) can only be taken for two years as that is the approval given. It caused a kind of bone cancer in lab rats so, although this has not been shown to happen in humans, for once the regulators are erring on the side of caution.
One thing your doctor needs to make sure of is your calcium and D are at healthy levels before you start AA or apparently it won't work as well as it could. Probably they are if you've been taking the supplements for a while, but they should be checked.
kathleen65757
Posted
Anhaga carol19895
Posted
Please see my reply on your other posst. I agree with Kathleen that Vitamin K2 is very important. Most of us are now deficient in this vitamin because of changes to food production. It's not the same as K1 which we can get from our leafy greens. In general I think fermented foods are very good for us, including helping bone density. If you aren't used to them, or maybe only know yoghurt, there are many others but they should be introduced slowly in small amounts as your body will need time to adjust to them as your gut flora becomes repopulated. They include yogurt, kefir, various fermented vegetables, including but not limited to sauerkraut, and fermented tea with a name beginning with k which I can't mention here! Vitamin K2 is actually made from fermented soybeans called natto, a Japanese dish.
carol19895 Anhaga
Posted
Thanks to everyone for info. My doctor said I'd be on it for life and oesteoporosis doctor said I'd get a scan in 5 years so I will definitely be asking questions a lot sooner than that. Took my first tablet this morning as decided stressing about it was probably worse than getting on with it. Followed instructions. Anyone else want to be 30 again! Quick question. Do you mean any type of yogurt?
kathleen65757 carol19895
Posted
Mainly, it needs to be one you enjoy and will be able to eat. It depends where you live and what choices you have there.
Anhaga carol19895
Posted
kathleen65757
Posted
I am amazed that one doctor said you would be on it for life and another said check it in five years. They must not be doing any research to say that now with all the information coming out. First of all, it will need to be tolerated by you. Then it is only 'safe' for two years but that is not even my belief.
People are sustaining femur broken bones with no accident occurring.
Remember you are in charge and your doctors can only advise not control your decisions.
All the best and I hope you keep well.
carol19895 kathleen65757
Posted
Very worrying. Haven't read anywhere that you have to be off it in 2 years. Arn't lots of people on it for much longer? My GP probably not so clued up but I've read it has the best effects within first 5 years. I was planning on asking for another scan in 4 and then a drug holiday or off it completely. Think it's my -3.3 t score that makes them think I'll be on it longer. At least no side effects from first dose. Thankful for small mercies.
Anhaga carol19895
Posted
The shorter terms are relatively new and it seems new information doesn't always filter through to frontline med people very quickly. I guess they don't have time to read journals or even the daily newspaper!
kathleen65757 carol19895
Posted
I would not risk it. Two years should make a big difference. It only needs to come back under -3 to be hugely improved. If 3-3 is the worst and not the average it is not too bad. Mine averages to something like that but the worst one is actually -4.3 in the lower back.
I worry more about arthritis in my back and bulging discs which render me very limited for walking and working.
kathleen65757
Posted
carol19895 kathleen65757
Posted
Thanks to you and Anhaga. Think I have a plan. Take the wretched stuff and pray I can tolerate side effects. Do my exercises while I can. Agitate for another scan after 2 years and keep everything crossed that the T Score improves. Thanks for telling me -3.3 isn't the worst if it's localised in hips. Right now any not so bad news is welcome!
kathleen65757 carol19895
Posted
Anhaga carol19895
Posted
All the best. Your appropriate exercise and following a bone healthy diet with a couple of supplements should help a great deal, so along with the medication you should see a very good improvement. As I've said elsewhere, can't remember if here as well, nutrition has been proven to be effective in improving bone density so don't rely on the drug too much, it's only one of the weapons in your arsenal!