Osteoporosis: Greetings and wishes of... - Osteoporosis Support

Osteoporosis Support

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Osteoporosis

doine profile image
16 Replies

Greetings and wishes of good health from Europe !

I join you, my friends in suffering, as I was diagnosed with osteoporosis last December(DXA -2.5

hips and -1.8 spine , but with wrist fracture).

I was immediately put on Actonel, D3 and Alfacalcidol/Medirazin without any other medical tests.

I was told that I will do them in November...

I get my calcium mainly from seeds ,almonds, vegetables,etc. and less from dairy products.

No Boron, Strontium, K2...

I do the recommended sport (walking, going up and down the stairs, working with weights,etc)

I regret that I immediately started with bisphosphonates but I was scared..

That is why I would like to know ;

-Has anyone given up bisphosphonates and continued without them?With what consequences?

-The vibrating plate has no negative consequences for the hips ?(it is practiced while standing...)

-Please,do you have advices on increasing bone mass and sports for the hips ?

-Does anyone follow PEMF therapy ( Dr.W.Pawluk) ? Good results ?

-Did you get good results with Osteostrong? It is not too strong ? Which device especially?

-Does anyone follow the treatment with bisphosphonates and Osteostrong at the same time?

It is not said anywhere if it is ok or not..

-Osteostrong does not have a representative in my country, but in a neighboring country..

I would have to travel several hundreds km a week.. is it worth it?

Thank you in advance for reading my message, for your answers and opinions/advices.

I wish you all, the health that I wish for myself !

Best regards,

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doine
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16 Replies
Met00 profile image
Met00

My first question would be, how did you fracture your wrist? Would you say it was a high or low impact (fragility) fracture? If high impact (eg falling off a bike or horse), then it shouldn't be included in calculating your fracture risk and those scores alone don't suggest a high risk of fracture. If it was a low impact fracture, however, (eg falling from standing height), then that does put you at risk of further fractures. Having said all that, bisphosphonates don't reduce the risk of wrist fracture (see nice.org.uk/guidance/ta464/... and only halve the risk of spine and hip fractures. The biggest risk is from falling, so the best thing you can do is to exercise to build up muscle and bone strength and balance. I was diagnosed almost 9 years ago and tried bisphosphonates for a year but have taken none since due to side effects. I'd had a baby toe fracture (not normally considered a fragility fracture) a year before, and haven't fractured since.

doine profile image
doine in reply to Met00

Thancks for the replay.

It was a low impact fracture (climbing the stairs in a hurry, I tripped and leaned on my hand) and this is the reason why I am worried-possible future fractures,not only wrist fractures but spine and especially hips ones (the most dangereous).

I am determined to do everything to stop bone loss (if gaining new bone mass is not possible),but I don't know what would be the best for me.

That's why I appealed to you and I hope that the advice received will help me.

wellness1 profile image
wellness1 in reply to doine

Margaret Martin is a Canadian physical therapist specialising in osteoporosis. She's a very good resource for exercise/bone health information -- videos, blog posts, and books. She has a YouTube video on strengthening hands and wrists, Best Hand Exercises for Seniors, I think it's called. Many others, too.

doine profile image
doine in reply to wellness1

I already follow her..

Thank you,

Best regards

Fruitandnutcase profile image
Fruitandnutcase in reply to Met00

I know a low impact fall is considered to be falling from standing height but I often wonder about that - I’m sure you can fall with terrific force from a more or less standing position but surely the speed at which someone is moving and the person’s weight must make a difference. I can see how doine’s fall on the stair is a low impact fall but surely if you trip, fall forward for a distance and and then come down hard that must be more than low impact?

Met00 profile image
Met00 in reply to Fruitandnutcase

I agree. A good example is slipping over on ice, when you're likely to fall extremely hard, causing high impact.

doine profile image
doine in reply to Fruitandnutcase

I was just going up, I tripped and leaned on my hand and stopped on my knees...I didn't came down hard.Anyway, the fracture has healed, but there are still questions for which I can't find answers and that's why I turned to you.

Fruitandnutcase profile image
Fruitandnutcase in reply to doine

I’d say that sounds like a very low impact fall.

I fell off my bed one night in January 2020, my room is totally blacked out so I haven’t a clue what happened other than I ended up about a meter away from the bed, on a wooden floor and up against the bedroom wall with a broken wrist. I think I was probably asleep and thought I was on the floor when I was actually standing on the bed but who knows. Spine was osteoporotic but hip measurement was only in the osteopenia range I was prescribed bisphosphonates which I took for a miserable four months then stopped.

I read a very good article about PEMF therapy and bought a mat - I swear by it for pain, I don’t know if it is helping my bones though. I use it for 20-30 morning and night. It’s a good time to relax and read or meditate too.

I’ve got a Marodyne low intensity vibration plate but I haven’t used it much recently - I had a nasty accident and fractured my sacrum two years ago and I’ve been a bit cautious but I must get back to using it again.

I take magnesium capsules, K2 Mk7, boron, vitamin D I test a few times a year and vary between 1000 and 3000 IU, a seaweed based DHA omega3 oil capsule, half dose of a seaweed based calcium capsule (the calcium carbonate I was prescribed totally upset my gut) which says it has 72 trace minerals in it. I take that just to top up my dietary calcium which is pretty good on the whole. I eat a lot of fish, green veggies, unsalted nuts and seeds, I don’t eat much dairy, some cheese and I’ve started to eat a little live yoghurt and drink water plus very weak tea and the odd cup of decaf coffee and very odd glass of red wine.

I’ve also tried Bone Balance - sachets of powder that you mix into water/tea or coffee but it is expensive and I can’t find out exactly what is in it which puts me off.

I do Pilates twice a week and walk for about an hour most days I also have a weighted vest that I stopped using when I fractured my sacrum, at the moment - I need to remove some of the weights and get back to using it, I like how it feels - at the moment Im just using a Fjalraven Kanken backpack which is the best fitting and most comfortable back pack I have ever had. I’d like to do weights more regularly but haven’t got that habit established.

Hope that answers some of your questions.

doine profile image
doine in reply to Fruitandnutcase

Thank you very much for taking the time to reply to my message. I also intend to buy a weighted vest to avoid kyphosis (if possible). As for PEMF therapy, only high intensity devices/products help the bones as well. Consider as well the therapy MBST.

My best wishes,

Fruitandnutcase profile image
Fruitandnutcase in reply to doine

Looks interesting but it is quite expensive, I know the Maridyne is expensive but it belongs to me now. £1000-1900 for a course of MBST is a lot, there is nothing near me and I can’t imagine travelling to any of them for a course of treatment either so I’ll stick with lying on my PEMF mat and see what happens.

I bought the Hypervest Elite as seen on Margaret Martin’s website. It’s really neat very comfortable to wear, it has masses of little weights and pockets you can arrange for comfort.

paxom profile image
paxom

I can't address the other questions you have as I am wondering many of the same things. However, I do use a low intensity vibration plate every day. I had seen a video of woman who seemed knowledgeable about its use, and she showed it being used both standing and sitting. So, I do use it both ways. Good luck with everything. You are asking good questions about the treatment.

atace profile image
atace in reply to paxom

Thanks for your replay.Best wishes !

MAosteo profile image
MAosteo

Greetings! Not sure where you are in Europe, but you could check out MBST therapy. Their Osteospin device treats whole body, purportedly improving bone quality without side effects. I am considering going to one of the centers next year (from the US - not available in US yet).

mbst.de/english/index.php

mbstmedical.co.uk/

doine profile image
doine in reply to MAosteo

Thank you for the answer. I know MBST therapy, there are centers in my country as well, but they have other devices and not Osteospin.

I think this is the latest one and few centers in Europe have it (I've already checked). I think I will go to the country closest to me that has it.

I wish you all the best !

Cologne1 profile image
Cologne1

I can understand your feeling on being scared to take medication. It's a decision you have to make after talking to your doctor and getting all the facts. For some people the medication works out and some have side effects and after you are on it for awhile you will know if it's right for you or not. I was on Actonel for almost 11 years and had heartburn and wanted to get off it but my Gynecologist said my numbers were not good and I had to tough it out. My primary doctor did not agree with that and didn't like her advice to tough it out. I made a small improvement while still on it and then the next year it went down. The Gynecologist suggested that I go on Prolia and gave me a brochure on it. The side effects were frightening and then I found out on Health Unlocked that you can't stop Prolia you have to go right on to another drug and I said no way. So I had enough and stopped the medicine after almost 11 years. I knew I was taking a chance but I didn't feel I had a choice. A dexa scan a year later didn't show any big changes. I have been off medication for 10 years and had a dexa scan this past spring and my numbers did go down a bit and I was not surprised. I had two difficult years and had lost weight and you lose bone mass when you lose weight. So I kind of expected it to be down. Also please note not everyone who takes Actonel gets heartburn. It's a hard decision but you need to consult with your doctor and do what's best for you.

doine profile image
doine in reply to Cologne1

Thanks for the answer. I'm sorry for all the problems you have had.. Since I had a fracture and there is a risk of having it in the future, I will consult my doctor regarding the treatment, but I will use all possible methods in the meantime .

So far I have no problems with my stomach, I take the gastro-resistant one, after breakfast.

I wish you to have the strength to continue as you have decided and not to have big changes.

Best regards,

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