National Osteoporosis Society - Osteoporosis Forum / Osteoporosis Forums / About Osteoporosis

bone fracture and ongoing pain

B'dette — Sun, 04 Apr 2010 23:53:25 GMT

Hi

I am new. I am a 61 year old female. I was diagnosed with osteoporosis two years ago. 6 months ago I used a rebounder (not knowing that I was putting myself at any risk) and fractured two of my vertebrae T7 T8. Since then I have been in continual pain despite the doctors having told me they should have healed in 3 months. Has anyone else had this experience? Does anyone have advice on what exercises I can safely do? Please? B'dette.

kyphoplasty

cymraes — Sat, 10 Jul 2010 18:30:49 GMT

Hi, has anyone had kyphoplasty. I'd be very interested to know how you found it. Did it get rid of the pain from your wedge fractures? I am seriously thinking of paying for private surgery as I have been in pain for 6 months from 3 fractures and can't bear it much longer. Also my quality of life has been seriously compromised. I am 65 yrs old.

Melatonin for osteoporosis ?

Annabel Lee — Wed, 21 Jul 2010 09:28:11 GMT

There's an interesting article in the Daily Mail about research into using Melatonin for osteoporosis: Could a sleeping pill help rebuild your brittle bones?

Melatonin is something produced by the body naturally, but some people, especially when they get older, don't produce enough of it. Melatonin has been used to help with insomnia.

I know I don't have a good sleep pattern, I wake several times per night, always have done since I was a teenager...that's how I'm able to take my Strontium Ranelate dose during the night. I've considered asking my GP for Melatonin for my sleep, (but have not done so as there is a suggestion that it is not advisable for people with diabetes) but I'm wondering now if it would have a dual good effect.

I see Rob Dawson from the NOS responded in the Mail article - I wonder if that is our Rob with the doggy on the forum ?

HRT and Osteopenia

Suzkin — Sun, 25 Jul 2010 12:35:08 GMT

Hi,

1) I've recently been diagnosed with Osteopenia, and because of this, my GP has recommended that I start HRT (I'm 43 years and post menopausal).

Question: What is the connection? I am wondering how (and to what extent) HRT would assist osteopenia?

2) Whilst I appreciate we are all different (!) my mother had an early menopause, was on HRT for (a staggering) 20 years, and recently when she was measured for height (she is 63 years old), had lost 2 inches.

Question: Is HRT and bone density non-related? Would the loss of 2" to her height be caused from other factors, and if so, any suggestions?

Many thanks.

General Confusion

emmera — Fri, 09 Jul 2010 07:46:35 GMT

Hello all. I am a 35-year old woman diagnosed with osteoporosis. I have had absent periods for 10 years. I have never had the root cause of that explored, and I'm not sure why I have the OP either, but I'm guessing it's related. My question is: can/does this disease cause a curvature of the lower back (I have a really hard time holding a flat back/plank position in exercise classes) and if it does, does this mean I have broken my spine, but didn't feel it? I don't have any pain in that area. My other question is more general: to those who have been living with this disease for a while, do you recommend anything to me knowing I'll have to live my life with it? I have no primary care physician and no health insurance so for the moment I have to just sit around in fear and wonder if there's anything I can be doing on my own. Thanks so much.

New here...not trying to waste peoples time just wanted some advice :)

Joe_17 — Sun, 18 Jul 2010 23:08:37 GMT

Hey guys

First of all, I have not been diagnosed with Osteoporosis.

I have been ill the last 8 months and have been having numerous tests for a while. I had blood tests,some scan to see how my bones were working and a proper bone scan and skull X-Rays.

I have had high blood pressure, sore throat and palpatations that I feel in my upper back from the beginning of that period and my rheumatologist has basically said that I had a slight reduction in white blood cells with indicates a viral infection which will have now passed but I'm still feeling the effects due to the fact it has only just passed.

I have complained about my bones from the beginning because without sounding paranoid I noticed a change in appearence starting from my knuckles.

The reason I still question my results is because my skull clicks from time to time and my left rib clicks quite often. My ankles look extremely bony and if I move them in a cirucular motion they click, if I press the bone just above my foot that also makes a clicky/crackling noise as it grinds.

I have a slight skull depression but after the X-Rays she believes that it has been there a very long time and she'll be able to see after my upcoming CT scan. I am not doubting that may be the case but my bones do click a lot and I do feel very ill with a persistent sore throat and extremely high blood pressure. I find it hard to believe that if it was a virus and it has passed then my sore throat will get better and my blood pressure will go back to normal considering it has been the same for so long.

I'm not sure what my next step is considering my parents don't believe there's anything wrong and my rheumatologist is about to assign me a physio to build myself up.

I feel as if going for walks as the physio will instruct me will not have any effect on my blood pressure, throat,palpatations and bone clicking whatsoever.

I don't have much idea about Osteoporosis but have heard about it quite a bit.

I shouldn't really be asking people who aren't doctors for answers but I would really appreciate it if you could give me your opinion.

I'm unsure what to think.

Thankyou, Joe.

What does the future hold?

Katie — Tue, 13 Jul 2010 16:03:17 GMT

Hi everyone, my boyfriend has just been diagnosed with osteoporosis, he is 46 and it is quite advanced. It's quite scary trying to get my head round it and give him the support he needs. What does the future hold for him?

More confused than ever

MrsW — Sat, 10 Jul 2010 17:43:28 GMT

I've had to stop taking Alendronic Acid after it making me very ill for almost four weeks with vomiting, acid indigestion, dizziness, I was also experiencing feelings of anger/anxiety that have now gone since stopping the meds. My GP referred me back to my rheumatologist (whom I see for Sjogren's syndrome) for advice where I saw the nurse clinician. She recommended the Strontium and said she would write to my GP to prescribe it. When I went for a follow up appointment with my GP she wrote me a prescription for resedronate which I took to the pharmacist. I then discovered that this medicine is almost the same as Alendronic Acid so I gave it back to the pharmacist as I absolutely refuse to take it due to been so ill previously. The pharmacist also said it is unusual for Strontium to be prescribed now.

I rang the hospital to speak to the clinician but was put through to the secretary who confirmed that the letter was requesting resedronate, and that was also stated in my notes. The clinician has rang me back this week, I asked her about the Strontium and she said it's not suitable for everybody, perhaps due to my age (47), and as the rheumatologist is on holiday suggested I go back to see my GP.

Does anyone truly know anything about these meds?, I am absolutely loathe to take another if there's chance of it making me so ill for so long again, but it seems the powers that be aren't interested unless you follow their protocol of meds in a particular order. Yet both the clinician and my GP have both stressed how important it is for me to be on medication due to my T Scores and my age. To be honest I think I'll take my chances with no medication and the fractures, after all it's usual to have a break if you have a serious fall anyhow, but it's not normal to poison your system with meds that make you so unwell for weeks on end even after you have stopped taking them. That's my personal belief.

I am even more confused than ever over this issue, and can't help wondering if it's a lot of fuss over nothing, any help, advice or opionions would be greatly received.

Thank you all.

Help with a Project

sara.g — Wed, 14 Jul 2010 01:02:12 GMT

Here is the link to the survey: [removed]

This is for [removed] a renowned science program, and we need any feedback!

Thanks so much!!

Hormone Replacement Therapy - We want your views

Claire Bowring — Tue, 08 Jun 2010 11:52:59 GMT

National Osteoporosis Society Policy on Hormone Replacement Therapy for the Treatment and Prevention of Osteoporosis

As recently as two decades ago, Hormone Replacement Therapy (HRT) was the only treatment available for osteoporosis and was prescribed for post-menopausal women to raise the level of the hormone oestrogen after the menopause. However, over the last twenty years, the range of treatments for osteoporosis has greatly increased and we have a far better understanding of the effects of the long-term use of HRT.

Following the high-profile reporting of side effects (such as stroke, breast cancer and heart disease) in the Women’s Health Initiative (WHI) trial many doctors and women have moved away from using HRT. However, HRT has been shown to increase bone density and reduce the risk of fracture and can successfully relieve menopausal symptoms such as hot flushes, vaginal dryness and loss of libido.

We feel that the role of HRT in the management of osteoporosis needs to be clarified. Recent reanalysis of the under 60’s age group in the WHI study, new data on the potential long-term side-effects of bisphosphonates and the production of unworkable NICE guidance have all influenced the development of our policy.

We have developed a policy on HRT with our scientific advisors and would now like to open the issue up for wider stakeholder input. We would welcome your views and opinions. Please discuss them here, but to be formally considered as part of the consultation process they need to be submitted on the consultation response form.

You can download the policy and consultation response form at www.nos.org.uk/consultation

Thank you.

side effects of Actonel

Romy — Tue, 11 May 2010 20:20:32 GMT

I took Actonel for 3 years but 3 weeks ago had a very severe reaction - I usually took my Actonel on Thursday - very carefully waiting at least 45 minutes before eating and always sitting up straight for that time - but on the Friday I took my glucosamine pill and had the most terrible spasm in the oesophagus - the pain was terrible and went on for several hours - I went to A and E at the local hospital - - they gave me anti spasmodic tiny pills and then an injection of morphine. I went home after 5 hours and threw the Actonel away -after reading problems with the oesophagus as a definite side effect. Now I have been prescribed Adcal - and have just read all the side effect problems with that ! Has anyone else had similar problems with Actonel ?

Some questions to ages 65+

Charlotte.Lea — Tue, 06 Jul 2010 10:56:42 GMT

[edited]

Prolia

nickyv33 — Tue, 22 Jun 2010 22:25:19 GMT

Has anyone heard of this new drug that is injected twice a year under the skin to avoid stomach problems ?

Nic x

Strontium Ranelate (Protelos) Patient Support Programme

Annabel Lee — Thu, 10 Jun 2010 18:04:15 GMT

I have just discovered that anyone on Strontium Ranelate (Protelos) can join a support programme run by the maufacturers: www.protelos.co.uk/Patients You can talk to a nurse about Strontium Ranelate, any problems you have with it, and any concerns about osteoporosis ! I rang them, got through quickly, registered to join and talked with the nurse. The service is completely confidential. You also get a magazine with articles about osteoprosis. You can phone the freephone number any time you have problems or concerns. I asked about DEXA scans and how strontium affects them.

It says on the website:

[i]If you would like to talk with a trained nurse it is important to know that all Protelos patients are eligible for a free support programme provided by the makers of Protelos. The programme is called Embrace and you can register by simply calling 0800 678 5608
[/i]
And:
[i]You are entitled to additional nurse support provided by the makers of Protelos, Servier Laboratories
[/i]
- If only other pharmaceutical companies did that - most are too afraid to listen or talk to patients and fob them off telling them to see their GPs, but often GPs simply don't have the specialist knowledge that some of us need to know about specific medications.

The website also has a link to the NOS and encourages people to become members of the NOS.

Osteo Porosis and Teeth

IEL — Thu, 01 Jul 2010 10:49:58 GMT

This is probably a silly question, I have recently been to the dentist and she says I am losing calcium from my teeth, and she can find no reason for this. Can it affect your teeth in this way does anyone know?

Iris

The Real Cause of Osteoporosis - The Human Skull Defect

reoxlee — Thu, 01 Jul 2010 05:36:26 GMT

Read this through, it will only take 5 minutes.

The Human Skull Defect

First of all, I want you all to take a look at the picture below.

http://www.mypicx.com/uploadimg/737810193_05202010_1.jpg

The above is a skull of a human, while the one below is of a Gorilla. Notice the difference between the height of both skulls.

Now here's a picture of a human skull alone including the part of the neck or cervical vertebrae.

http://www.mypicx.com/uploadimg/1557312481_05282010_1.jpg

You can see that I drew a red cross in the middle of the skull indicating the point where the cervical vertebrae are connected to the skull. Notice that the red spot is not at the centre of the skull (which is the center of gravity for the skull). The head structure seems to be "too high" and the forehead "too wide" in comparison with the middle point. This to me simply means that our head is not efficiently supported by our neck muscle.

Think of it as we are balancing a "bowling ball" on our neck. If you were to put this "bowling ball" on a monkey's neck, in the long term, it too will stand up straight in order to balance this "ball" effieciently. That's what I think. If you look at women, some of them have thinner neck muscle which will contribute to osteoporosis. Although for men, the curve on a women's body seems very attractive but this occur in order to balance their head, which to me is very unhealthy for the spine.
Here's something to prove my point
This is the untouch picture showing some primates skeleton and also a human skeleton
http://www.teachersnetwork.org/powertolearn/web/Prehistory%20Web%20Quest/images/human_evolution.jpg

In this picture, I have pasted the upper head of a human skull to the other primates upper skull in order to show that by doing so it will not only increase the weight of the skull but also the height of the skull.
http://www.mypicx.com/uploadimg/1286632843_05282010_1.jpg

Compare this to a primate head.

http://www.mypicx.com/uploadimg/271021506_05242010_1.jpg

As you can see, the primate upper head is well supported by its neck muscle. The center of gravity is low compared to the human skull which allows it to easily control its head without much effort. Some of you may say that this is rubbish and that you can move your head without any problem. In order to move a muscle, we need energy. Energy comes from our blood which contains glucose from what we eat and oxygen through our breathing. Let me give you an example; as you are looking at your computer screen for a period of time you will get tired. This is because you are simply not breathing in enough oxygen to allow your neck to support your head. Do you like to eat while you are using the computer? Now you know. This is also the reason you will find that most people tend to move their head (up, down, left, right) when they are talking. Have you ever notice that? I believe this is because our heart is trying accommodate with the lifting of our head along with our breatihng. When we look down, we feel relax because our heart don't have to work as hard to lift our head and we cn breath easier. This is also the reason why some people seem to be more confident than others, while others feel nervous all the time. A confident person just has a stronger neck muscle or the center gravity of their skull is more balanced thus allowing them to move their head easier than other people without affecting their breathing. It’s that simple.

Now, some of you may ask what significant does all these have to do with you? My answer to this question is "EVERYTHING". I am confident that it is this defect that have made human weaker in terms of physical and mental. This also contributes to the emotional expression that we are displaying today.

http://www.mypicx.com/uploadimg/1032379192_05252010_1.jpg

This show the long term effect of such defect. As we gets older, our skull will slowly lean forward due to gravity (the long red arrow shows the direction in which the skull will slowly fall). Since our brain is inside the skull and doesn't move, what will happen is it will stretch the nerves around the brain which runs through our body (the short double arrows show some of the spots which the stretch will occur). These include our eyes, ears, mouth, and most importantly our spinal cord. Now, what will happen if this stretch continues?

For our eyes: Illnesses such as far sighted or near sighted, glaucoma, or in a more severe case - retina tear.

For our ears, the ear drum will be stretched and weak in hearing will occur.

For our mouth: Ulcer, gum disease, sensitive teeth, and tonsillitis, just to name a few.

http://www.mypicx.com/uploadimg/472063125_05252010_1.jpg

The effect for our spinal cord would be back pain. In a long run, illnesses such as osteoporosis will start to developed. The reason for this can be clearly seen with the pictures below

http://www.mypicx.com/uploadimg/1217532986_05252010_1.jpg

http://www.mypicx.com/uploadimg/519042309_05252010_1.jpg

The first picture shows a normal vertebrae if you will. Flexible with minimum friction. As the human skull fall forward, it will pull the nerve from the brain all through the spine which can be seen as illustrated in the second picture. Also, the back muscle will tense up in order to lift the head and this will also cause harm to the vertebrae. This is why I am certain that drinking more cows milk will only increase the weight of our skull and thus accelerate the development of osteoporosis. Here's the lnk to prove what I mean.

http://www.naturalnews.com/002695_Robert_Cohen_cows_milk.html

Notice that Norway, Holland, Sweden, and Denmark which are countries that produce large amount of cows milk incidently also have one of the highest case of osteoporosis in the world.

To the brain itself, due to the pressure and stretching inside the skull, I strongly believe that brain cells will start to die off resulting in memory loss or Parkinson's disease in severe cases. Some people may experience headache, fever or even apnea (sleeping disorder). Between the membran of the brain and the inner skull, friction will also occur. As a result it will cause some minor tissue tear. But because there are no nerves on our brain's membran which detect pain, what we will feel is warmness and sometimes fever. Also, don't forget that the outer layer of the skull is of course our skin which involves blood arteries and veins. Due to the stretching by the neck muscle, the skin on our forehead will get thinner, resulting in blocking of blood supply which leads to baldness in the beginning and sometimes headache will occur. Look at the picture below and you will understand what I'm saying.

http://www.mypicx.com/uploadimg/126426084_05272010_1.jpg

http://www.mypicx.com/uploadimg/1377170162_05272010_1.jpg

http://www.mypicx.com/uploadimg/1854978803_05272010_1.jpg

On the third picture, you can see that due to the "nature" of our skull structure, our face are being stretched, causing the face pores and muscles to be tighten and eventually resulting in condition such as acne and deviated septum. This is also direcetly responsible for certain facial expression on our face.It is this stretch and pull of muscles which result in us having different faces

Due to this heavy skull of ours, our body will tense up even if you don't realize it. The nerves from our brain to our spinal cord will be stretched. Our breathing is significantly affected by this condition. This have prevented us from breathing properly as you can see from the picture below.

http://www.mypicx.com/uploadimg/1836744985_06062010_1.jpg

This in turn have caused our organs to degenerate faster and causing illneses such as diabetes, cancers, heart disease, kidney failure and etc. This is even directly causing mental illness to some. Behavior such as bad temper, extremly emotional and even a long term effect such as syncophonic. Many allergic such as asthma and sensitive skin can be prevented if proper breathing technique is practice at the early stage. Human being are becoming weaker mainly because of this defect which is preventing us from fully utilizing the potential of our mind. What a waste.

Here's a simple experiment which you can all do in front of your computer screen. Sit up straight and put both of your palms on top of your head. Try to search for the most comfortable spot which you can hold you head efficiently without much effort. Now gently press down you head. Use this picture as reference.

http://www.mypicx.com/uploadimg/656126590_06102010_1.jpg

You will find that in less than 5 seconds, your whole body will feel more relax, your can breathe in more air and feel more alert at the same time. It will also cool down your body. You may want to try this when you are feeling tired to feel the effect.

Please take note that I'm not saying that bacteria, viruses or mutation, etc...don’t affect the human health. What I have mentioned above is due to the "natural" condition of a human body particulary the skull which contributes to some of the health problem which we are facing today. Please remember this.

To some of you this may sound a little unreal at this point, but to me this is as true and real as the water I drank after I finished running a marathon.

Using a nutritionist to treat osteoporosis / osteopenia

jennan — Sun, 23 May 2010 17:16:02 GMT

I am considering using a nutritionist or going to one of Marilyn Glenvilles's clinics after reading her book on osteoporosis.

I would be intersted in hearing others experience. Is it really beneficial?

Aclasta (Zolendronic acid) infusions.

DavidW — Wed, 16 Sep 2009 20:45:58 GMT

I have osteoporosis and also have an oesophageal condition which precludes me from oral bisphosphonates. I tried Strontium Renlelate, but suffered upset stomach. My consultant recomended Aclasta, a bisphosphonate given by intravenious infusion once a year and one of the few drugs licensed for men.

It is fantastic and I would recommend anyone to try it. I only have to have it once a year and my bone density has increased by 8% after one year.

The down side is trying to get the infusion done. Our local NHS do not seem to have facilities. The infusion takes 15 minutes, but nurses in outpatients are apparently not trained to give intravenious drips. Because it takes such a short time I cannot be admitted as a day case.

BUPA will not pay to have it done. The drug is not hugely expensive (£300, the cost of dental treatment) and I can have it as a private patient, but I have to book a room for a day!

So far, my consultant has been very cooperative, "borrowing" a room and a nurse for half an hour, but surely everyone on the treatment cannot be doing this.

Does anyone have a solution, or am I the only one to have a problem?

A different perspective on Stontium

Caff55 — Wed, 29 Jul 2009 09:07:08 GMT

Hi

If you are taking Strontium ranelate or Strontium Supplements read this article:-

http://nutricology.com/In-Focus-April-2007-Strange-Case-of-Strontium-sp-54.html

Just for the record I'm experimenting with Strontium Citrate. Being male the NHS won't prescribe ranelate as it's not registered for males by nice.
The one thing though is the more I read the more you realise that osteoporosis is a disease where there is nothing certain both in traditional medicine and alternative.

Pilates

Woman57 — Tue, 22 Jun 2010 07:49:41 GMT

I have been doing Pilates once of twice a week. I am 57 and have just been diagnosed with osteoporosis of the spine.

Should I continue with pilates? I'm unclear what exercise regime is best. Thanks

T scores- an explanation please

Woman57 — Fri, 25 Jun 2010 10:24:05 GMT

Hi,

My consultant said I have osteoporosis and has prescribed Alendronic acid. I followed up with my GP yesterday and she says my hip score is -1.1 and spine - 1.9. However from reading - I understood that a diagnosis of osteoporosis is given at - 2.5 and osteopenia betweem -1.00 and - 2.5.

Could anyone explain please.

Thanks

Follow up- I now know that my GP gave my my z scores and the t scores are -1.5 -1.9 (hip) and - 3.1 (spine). My GP apparently knows absolutely nothing about osteoporosis!

Osteomalacia and osteoporosis

Annabel Lee — Sun, 20 Jun 2010 12:33:55 GMT

Since osteomalacia has similarities to osteoporosis in that they are both diseases of the bone and both can cause fractures, and one can lead to the other, I have copied and pasted the relevant parts from the patient.co.uk leaflet about osteomalacia:

[b]What is osteomalacia?[/b]

Osteomalacia is a condition affecting bones and muscles. It only occurs in adults. The bones become soft and prone to pain and fractures. It occurs when there is inadequate or defective bone mineralisation. This means that the bones are not hardened by mineral containing calcium and phosphate.

[b]What are the symptoms of osteomalacia?[/b]

Sometimes the symptoms are very vague, with a general sense of not being well, and aches or pains. A common symptom is bone pain which comes on gradually and stays. This pain is often in the lower back and hips. But, in severe cases, all the bones may be aching and painful.

Other symptoms that may develop include:

Bone tenderness - bones can feel painful to moderate pressure (often more noticeable in the ribs or shin bones). Not uncommonly, people have a hairline fracture in the bone which is causing tenderness and pain.

Muscle weakness, often noticed as difficulty in climbing stairs or when getting up from the floor or a low chair. Sometimes, people who have osteomalacia walk in a 'waddling' pattern because of the muscle weakness.

[b]Are there any complications of osteomalacia?[/b]

Osteomalacia causes general weakening and softening of the bones, which is improved by treatment. However, until treated, the bones are more prone to fractures (breaks). Severe osteomalacia can cause small fractures in more than one place at a time - for example, in the pelvis, thigh or ribs. Prolonged osteomalacia or osteomalacia treated very late, can cause permanent bone deformities such as kyphosis (bending of the spine) or curving of the long bones in the arms and legs.

Osteomalacia sometimes causes low levels of calcium in the blood. Theoretically, low calcium can lead to muscle spasms (cramps) or seizures - but in practice this is unlikely to happen.

[b]How is osteomalacia diagnosed?[/b]

Osteomalacia may be suspected from your medical history, symptoms, or lifestyle ('risk factors' for vitamin D deficiency). A blood test can check your vitamin D levels. Liver function blood tests and calcium and phosphate levels are also measured as they may detect problems with the liver or bone that are linked to osteomalacia. Sometimes osteomalacia shows up on an X-ray, but X-rays are not usually necessary.

Usually, the symptoms plus blood tests are enough to make the diagnosis. Extra tests may be needed if the cause of the osteomalacia is in doubt, or if there are other vitamin or mineral deficiencies. For example, if anaemia is found as well, you should have a blood test to look for coeliac disease. More tests may be needed if you have another medical condition which is contributing to the problem.

[b]What causes osteomalacia?[/b]

Osteomalacia is usually caused by a lack of vitamin D (vitamin D deficiency).

Vitamin D regulates the bone-building process and the way the body handles calcium and phosphate which are used in the formation of strong, hard bones.

Vitamin D deficiency is actually very common, but it must be severe and prolonged for osteomalacia to develop. The lack of vitamin D also leads to muscle weakness, which is also part of osteomalacia.

Most of our vitamin D is made in the body by the action of sunlight on the skin. This means that people who stay inside or who cover up their skin, struggle to make enough vitamin D. Black and Asian people need more sunlight exposure to their skin to make vitamin D. The elderly and housebound are particularly at risk. Lack of sunlight on the skin is the main reason that people get vitamin D deficiency and osteomalacia.

Some medical conditions and some medicines increase the likelihood of vitamin D deficiency and consequent osteomalacia.

There are some rare inherited conditions that affect bone mineralisation and cause osteomalacia. Aluminium poisoning is another rare cause.

[b]How common is osteomalacia?[/b]

We don't know exactly how common osteomalacia is. Possibly it is under-diagnosed, or not recognised enough in people who have symptoms such as bone pain. We know that vitamin D deficiency (which can lead to osteomalacia) is very common in the UK - it affects about 1 in 6 adults overall.

[b]Who gets osteomalacia?[/b]

Mostly people get osteomalacia because they have a severe and prolonged lack of vitamin D. The groups of people most at risk of this problem are:
Pregnant or breast-feeding women (because much of their vitamin D goes to the baby).
People who get very little sunlight on their skin such as those who stay indoors a lot, or cover up when outside. This group includes the housebound, those who have been in hospital for a long time, people who wear traditional conservative Muslim veils such as the burqa or niqab, and people who adhere to strict sunscreen use.
People with dark or black skins (because less sunshine gets through the skin) or people of South Asian origin.
People with a family history of vitamin D deficiency.
People having a vegetarian or vegan diet.
People over 65 years old. The elderly tend to have thinner skin which means there is less fat/cholesterol in it to be turned into vitamin D by the sun.
People with conditions that affect the way the body handles vitamin D. For example, those with coeliac disease, Crohn's disease, some types of liver and kidney disease, and after surgery on the stomach (gastric surgery).
People taking certain medicines: carbamazepine, phenytoin, primidone, barbiturates and some HIV treatments.

[b]How is osteomalacia treated?[/b]

The usual treatment is to take vitamin D supplements. This is a form of vitamin D called ergocalciferol or calciferol. The dose of ergocalciferol is written in units known as international units or IU. Some people use micrograms (μg) instead, which are not the same as units. Rarely, if osteomalacia is not caused only by vitamin D deficiency, other treatments may be needed.

Vitamin D can be given as an injection or as a medicine (liquid or tablets).

Injection
A single small injection of vitamin D will last for about six months. This is a very effective and convenient treatment. It is useful for people who do not like taking medicines by mouth, or who are likely to forget to take their tablets.

High-dose tablets or liquids
There are different strengths available and a dose may be taken either daily, weekly or monthly. This will depend on your situation and on which particular treatment guideline your doctor is using. Always check with your doctor that you understand the instructions - with high doses of vitamin D it is important to take the medicine correctly. The advantage of the higher dose treatment is that the deficiency improves quickly - useful if you have troublesome symptoms.

Standard dose tablets, powders or liquids
These need to be taken every day for about 12 months in order that the body can catch up on the missing vitamin D. This is a rather slow method of replacing vitamin D, but is suitable for prevention, or when higher doses cannot be used. A disadvantage of these medicines is that they contain either calcium or other vitamins, giving them a strong taste which some people dislike.

Doses of vitamin D required in osteomalacia

Nonpregnant adults
Vitamin D deficiency (and osteomalacia) in adults are treated with 10 000 IU calciferol daily or 60 000 IU weekly for 8-12 weeks. Alternatively, 300 000 IU to 600 000 IU can be given orally or by injection, once or twice.

[b]Cautions when taking vitamin D supplements[/b]

If you are taking certain other medicines: digoxin or thiazide diuretics such as bendroflumethiazide. In this situation, avoid high doses of vitamin D, and digoxin will need monitoring.
If you have other medical conditions: kidney stones, some types of kidney disease, liver disease or hormone disease. Specialist advice may be needed.
Vitamin D should not be taken by people who have high calcium levels or certain types of cancer.
You may need more than the usual dose if taking certain medicines which interfere with vitamin D. These are: carbamazepine, phenytoin, primidone and barbiturates.

[b]Are there any side-effects from treatment?[/b]

It is very unusual to get side-effects from vitamin D or calcium supplements if taken in the correct dose.

Doses of vitamin D or calcium which are too high can raise calcium levels in the blood. This would cause symptoms such as thirst, passing a lot of urine, reduced appetite, nausea or vomiting, dizziness, and headaches. If you have these symptoms you should see your GP promptly, so that your calcium level can be checked with a blood test.

Some guidelines advise that people taking high vitamin D doses should have their calcium levels checked during the first few weeks. In practice, this is not usually done unless you have symptoms of high calcium as described above.

[b]Prognosis (outlook) for osteomalacia?[/b]

If treated, the outlook is very good. Most people with osteomalacia recover with vitamin D treatment. However, it can take time (months) for bones to recover and symptoms such as pain to get better or improve.

Unfortunately, if osteomalacia is undiagnosed and untreated for years, bone deformities can be permanent and cause mobility problems, pain and abnormal appearance.

With prolonged or untreated osteomalacia, [i]the risk of getting osteoporosis[/i] (bone thinning and fractures in old age) [i]may be increased[/i]. It is also possible that the risk of getting other diseases might be increased. This is because vitamin D is thought to help prevent some conditions such as diabetes, heart disease and cancer.

[b]Lifestyle changes to prevent osteomalacia[/b]

Vitamin D deficiency and osteomalacia can also be prevented by lifestyle changes. This involves getting more sun exposure outside, and improving the diet to include the few foods that are rich in vitamin D.

2-3 exposures per week, to direct sunlight (that is, not through a window) are needed in the summer months from April to September. Each episode should be 20-30 minutes to bare arms and face. This should achieve healthy vitamin D levels to last through the year (as the body stores vitamin D).

Other groups
People with certain medical conditions and those taking specific medicines may need larger doses of calciferol to prevent vitamin D deficiency and osteomalacia. Your GP or hospital specialist should be able to advise you on the required amount.

[b]If you have been treated for osteomalacia[/b]

After osteomalacia has been treated, prevention will be needed so that it does not recur in the future. Most people diagnosed with osteomalacia will need to take vitamin D supplements long-term. These can be either vitamin drops/tablets taken daily, or stronger vitamin D medicines/injections taken at longer intervals such as monthly or six-monthly. It would be sensible to discuss prevention with your doctor.

Further information

Arthritis Research UK
Copeman House, St Mary's Court, St Mary's Gate, Chesterfield, Derbyshire, S41 7TD
Tel: 01246 558033 Web: www.arthritisresearchuk.org

Moving to Aus for year & Osteoporosis?

Shoebox20 — Mon, 14 Jun 2010 15:24:44 GMT

Hi All!

I'm heading out to Australia for a year to work (at 30 in terms of a working visa its now or never so I'm giving it a shot!) and am on medication in the UK for my Osteoporosis (Calcium + Vit D3 Supplements, and at the moment the Pill, but that might change as I've stopped taking it due to side effects)

I really want to know if I will be able to continue my medication out there, will it be expensive and is it only available through doctors? Also I'm thinking maybe other than the calcium supplement one there may be natural alternatives to help (Algaecal?) Any advice on access to medication or ideas what I should do to continue helping my condition while there would be great

Thanks so much

Lisa

Pain Relief

satdart — Fri, 11 Jun 2010 10:08:50 GMT

My pelvis broke last December in two places, no falls or accidents, I was diagnosed with Osteoporosis then last month a rib cracked.

I have severe pain in my ankles,knees and hips which greatly restricts my movement, can only walk a few steps. I am Diabetic and have kidney problems.

Upto a week ago i was taking Iberufen which helped with the pain, but due to my kidneys i have been taken off Iberufen and the pain is severe, i have been told to take co-codimal but they do not help.

Have any of you good people any suggestions to try and get a life back again free from pain.

Linda

End of life advice, worried about my elderly mother

sunseeker99 — Wed, 09 Jun 2010 09:35:35 GMT

Hello

My mother aged 90 has severe osteoporosis. (I too have been diagnosed). She is in a good nursing home, almost 100 miles away from me, and is prescribed morphine among many other drugs.

Lately she has been very short of breath and this is worsening considerably. I worry about whether she will eventually suffocate.

Can anyone give me advice about her end of life, how much longer she may live and what I can do to help her, apart from reassurance which I constantly give her but without knowing any facts? I feel helpless.

Thank you if you can offer any advice.

strontium ranelate

emmy — Mon, 17 May 2010 18:06:51 GMT

Hi, I have been taking Alendronic acid for the last 3 years but as it made me feel very unwell I have started to take Strontium Ranelate. I have been taking it for 2 weeks and after a few days started to feel quite sick and have an upset stomach. Unfortunately I still have these problems and am wondering if anyone else has felt like this at the beginning of their treatment. If so did it eventually pass or did you have to give up and take one of the other drugs. Having read good things about this drug I don't want to give up if I am likely to adjust given more time.

FREQUENCY OF SCANS

jkane — Thu, 10 Jun 2010 14:15:32 GMT

I notice from several of the posts on scans that people want more rather than less and are not being offered them. I seem to be lucky in that respect in that I've been offered a 2nd after less than 2 years although my FRAX results were only borderline. My worry is about having too many as I tend to avoid as far as possible having too many X-rays. Any comments about adverse affects from having a scan?

Vitamin K

Annabel Lee — Wed, 09 Jun 2010 14:00:38 GMT

Just reading with interest in the latest edition of Osteoporosis News about vitamin K and its possible good effect on bone density.

I looked up in nutritional tables both kale and spring greens to see how much vitamin K they contain. 100g of kale contains over 1000% of the RDA of vitamin K, and 100g spring greens over 500% of the RDA ! I eat at least 200g of either of those per day as they are so high in calcium too, 200g kale contains 270mg mg calcium, and 200g spring greens contains 290mg calcium. Obviously both superfoods for bone health and more :)

Questions from a newcomer

MrsW — Wed, 09 Jun 2010 11:23:42 GMT

Think this is only my second post on the site but I'm desperately in need of some answers. I was dxd last September with osteoporosis with T scores of an average of -3.5 to -4.0 if my memory serves me right, and in view of my age (46), loss of height and a spinal fracture I was unaware I'd actually done after a fall down the stairs, was put onto alendronic acid which I took exactly as prescribed.

Some weeks ago I started vomiting and feeling generally unwell 2 days after taking the tablet, the week after the same thing happened only this time I felt as if I had flu, felt so poorly I didn't get out of bed for 3 days, felt like the lining had been stripped from my gullet down to my stomach, was vomiting bile. Also had horrendous dizziness. Went to see my GP who said it was a reaction to the alendronic acid. Went to see the rheumatologist yesterday who has suggested I try the strontium.

Questions - has anyone had similar experiences, I've read a few posts and seen a few who have, plus researched online and found the most frightening things about this drug and how people have suffered. Is the Strontium as bad?, anyone reacted badly to this? Think I'd risk fractures before putting my body through what it went through with the alendronic acid. Does it effect the jaw?, I already have problems due to Sjogren's syndrome with dental health and do not want to court any more.

Secondly, after taking it for approx 4 months I started to feel anxiety, what I can only describe as anger, also slightly paranoid thoughts. This is totally new to me, never felt any of this before. Since stopping the meds, this has gradually lessened and I now feel more like my usual self. Anyone else experience similar?

Is osteoporosis really that bad a thing that I have to risk putting all kinds of drugs into my body that are going to cause me to react like this?

Apologies about the long post, but I really am befuddled and bemused with all of this and need some help from people who can understand and advise. Many thanks for taking the time to read.

Wendy

tolerating protelos

Saba — Mon, 03 May 2010 13:23:57 GMT

Hi! I started taking protelos about ten days ago and apart from one day when I felt very strange, am feeling tolerable except for having gone 'limp'. I normally exercise a lot but can hardly drag myself around even a moderate walk. I have become very withdrawn and as I live on my own, this is making me rather depressed. Can anyone assure me that this is just a phase I will pass through on my way to tolerating the drug? Best wishes - Saba

Alendronic Acid side effects

Rosalind — Sat, 01 Aug 2009 17:10:53 GMT

Hello,

I've just discovered this forum and decided to post my query here.

I'm a 64 year old woman who had an early meonpause in her twenties so the inevitable result was the early onset Osteoporosis as HRT was not tolerated.

I've been on Alendronic Acid over the last two years. I was diagnosed with Osteoporis about five years ago when I broke my ankle and initially given Raloxifene. However this caused 'flu like symptoms and I had to stop taking it. I was then given Didronel which I had for a couple of years with aggravation of back pain so was changed to Alendronic Acid.

Over the last year I have experienced strange sensations in my legs....twitching and pain. This is particularly bad at night. I also find I suffer a lot of muscle pain on exercise as well as lower and mid back pain. I have increased anxiety symptoms and night sweats.

I know it's easy to blame the Alendronic Acid but I wonder if any others have had similar experiences? Also, if I don't take it, what can I do to prevent the advancing of the disease. My doctor is against me stopping the drug.

Many Thanks

Ask the Helpline Nurses

James — Fri, 20 Nov 2009 14:22:12 GMT

If you have a burning question about osteoporosis and bone health and you’d like to get an expert answer from one of our qualified Helpline nurses, you can now use our forum to get in touch with our nurses.

On Wednesday 2nd, 9th and 16th of December, the 'Ask the Helpline Nurses' forum will open. You can find it on the main forum homepage (www.nos.org.uk/forum), under the heading 'Special Forum'. The nurses will post a reply within 48 hours.

Our public forum is visited by over 250 people each week who take part in order to share their experiences of osteoporosis and join a supportive on-line community. By sharing your questions with our nurses, the whole online community will benefit. If you would rather contact our nurses in confidence you can do so by clicking here or calling 0845 450 0230.

Please note the Ask the Helpline Nurses forum is currently closed. It will open on the dates above. If you have anything you'd like to put to the nurses, please do, as if this trial is a success it will hopefully become a regular event on the forum.

Once the forum has opened you can post a new topic in exactly the same way as you normally would. You will need to be registered on the forum, though most of you are.

If anyone has any comments or questions please let me know.

Thank you.

Any advice/information re: collapsed vertebrae & pain

Bennysmum — Thu, 03 Jun 2010 17:33:26 GMT

I am new to the site but I have already found a lot of useful information. I am using the site on behalf of my mum. I wondered if anyone had had any similar experience to us.

Mum is 79 and her main medical condition is Systemic Lupus (diagnosed 20 years ago). Mum is in the care of a Consultant Rheumatologist for the Lupus. About 15 years ago mum had two vertebrae collapse (T12 and L1) due to osteoporosis and she was in a lot of pain for some considerable time but this did diminish.

For the past few years mum has been taking Actonel 35mg once a week and the Calcichew D3 tablets.

Seven weeks ago she started with back pain and within 2 days is was excrutiating. GP sent her for X-Ray and prescribed Co-Codamol 30mg/500mg. X-Ray revealed collapse of T9 and T10. Due to worsening pain GP prescribed Tramadol, Naproxen and Amitriptyline. Consultant Rheumatologist telephoned mum and advised she was organising a Dexa Scan for her and a TENS machine (useless). Dexa Scan was three weeks ago and we haven't heard anything yet.

On looking at mum's back it looks as if a couple of vertebrae or protuding out sort of in the middle of her back maybe slightly higher. Her pain levels were quite good for the last two weeks but this week she is again in agony. The pain seems to be from the top part of her back (almost from where her bra strap would sit - where the vertebrae are protruding) and comes round to the front of her chest (I am assuming this is coming around the rib cage). Can this sort of thing affect breathing ie., cause some breathlessness, and can it affect digestion ie., indigestion? The top part of her back going towards the neck is slightly rounded which I know is probably to be expected. She is trying to stay mobile by walking around the house and garden and she can get upstairs although getting into bed is painful.

I just wondered is the pain from the rest of the spine having to compensate for the collapsed vertebrae lower down? Has anyone experienced collapsed vertebrae, or cared for someone, does the pain ease? I suppose how long one is in pain depends on the individual and the extent of the damage.

I have mum living with me so I can care for her full time but sometimes it is nice just to have bit more information.

If we haven't heard anything from the Consultant Rheumatologist by Monday I intend to telephone the secretary re: further information about the Dexa Scan results and what follow up care is planned.

If anyone has had any similar experiences I would be very grateful for any advice or information.

Many thanks.

travel insurance

Katiefizz — Sun, 30 May 2010 23:08:01 GMT

Anyone managed to get travel insurance for skiing holidays once diagnosed?? ohhhh, i hope so!

Rocaltrol anyone?

Annamarie — Mon, 24 May 2010 13:07:33 GMT

Is anyone else on here taking Rocaltrol? Would be interested to chat if you are following my initial dose of 0.75mcg which did not agree with me!!

Help re. power trainers

yeti — Thu, 03 Jun 2010 23:07:13 GMT

I started with severe back pain two weeks before Christmas.Took pain killers,saw doc,went to chiropractor and although on some days the pain has lessened,there are other times I can hardly get out of bed.Being on my feet for longer than 10 to 15 minutes is impossible.Two weeks ago I was finally sent for an X-ray and was found to have a wedge fracture of the spine. I am now waiting for a DEXA scan but guess I may have osteoporosis.I shall be 72 later this year so it is more than likely.

I have been told what to do to help the problem e.g. good diet,gentle exercise,no heavy lifting etc.but need advice with this :- My husband bought me a stand-on power trainer (vibrating plate). I haven't used it yet and would like to know if this would be a good thing to use or not. It has a very mild setting and is supposed to be good for relaxation.Any ideas please.

exercise to increase bone density in the spine

Jilly — Fri, 09 Apr 2010 19:45:34 GMT

I have recently started to attend a gym for weight training exercise and I wondered if anyone knows which are the best exercises to increase the bone density in the spine. I have the book 'Slow Burn' which was recommended but it refers to muscle rather than bone. Thanks.

Just diagnosed

Katiefizz — Wed, 26 May 2010 21:21:51 GMT

Have just been diagnosed with ostroporosis in my lower spine + hips (likely due to two lots of chemo in past 4 years and hormone therapy which Im still taking, for breast cancer) .... my GP rang to tell me yesterday + Ive just picked up a prescription for Alendronic acid.

Now then .... what do i do next?! Ive just returned to work after 30 weeks of treatment for breast cancer, Im a slim, active, "healthy" person (apart from the breast cancer!) who eats a healthy diet and doesnt smoke. Im in the TA, and always on the go. So what happens now .... what precautions do I need to take, just what are the risks of me having fractures with "every day " events, let alone with playing sport, running, hill climbing. Can I still climb, and ...... what about skiing later in the year? Sorry if these are really stupid questions, but just coping with the cancer is bad enough, and now theres another condition for me to get my head around. All help greatfully received!:w00t:

Depo Contaceptive Injection

Annamarie — Tue, 02 Feb 2010 14:20:26 GMT

Hi, I have just been diagnosed with osteoporosis out of the blue, following a fall on ice on Christmas Day. My mum has osteopenia and my gran on my father's side had a Dowagers hump. I have heard that Osteo can be hereditary, but have since heard of another person, similar age to me (37) that has been given a bone scan because she is on the Depo contraceptive injection. She was also discovered to have osteoporosis. I used it for 4 years up until last summer. Has anyone else heard of links between the two, and if there is, shouldn't there be some serious warnings out there?

Hip replacement & dexa scan

amelie — Tue, 18 May 2010 21:09:53 GMT

I'm very confused. Does anyone know if you can have a dexa scan if you have a metal hip replacement?

I have never been scanned and as I had a spontaneous fracture of my femur the hospital assumed I had osteoporosis. That has once been confirmed by an ordinary xray of my spine, which reported 'wedging' and 'compression'. I seem to remember reading somewhere that one couldn't have a dexa with a metal implant. I can't recall where I read this. I'm still in shock after the diagnosis so I'm reading everting I can find but seem to be getting more and more confused about all the advice given. I'm on Protelos and Adcal.

Amelie