This is my first time posting on here. I have some autoimmune issues but have just found out via a DEXA pelvic scan that I have osteopenia (I'm 46). Because I started on bioidentical HRT recently, the hospital said to wait & see if those had any effects & to re-scan in 3 years.
Should I follow this diagnosis up with my GP? Do i need to be taking extra calcium? I'm on an elimination diet at the moment (no dairy, gluten) for my autoimmune issues so am a little concerned about this & wondering about supplementing.
I exercise when I can - dog walks daily, swim, pilates etc 1-2 times per week.
Any suggestions greatly appreciated as internet seems a mix of advice.
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VanK
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Are you on any medications which may adversely affect bone density, e.g. corticosteroids? As far as exercise is concerned all exercise is good, especially weight bearing, like walking. A calcium/Vitamin D supplement is a good idea. You also need to take Vitamin K2 (not K1, it's different and readily available in the leafy greens you should be eating lots of). A well balanced diet should give you all the other micronutrients you need for good bone health, like magnesium, potassium, etc., but K2 nearly always needs to be supplemented as it's lacking in the modern diet. Dairy isn't the best source of dietary calcium, so not to worry about reducing your milk intake. If you can tolerate fermented dairy, namely yoghurt and kefir, and some cheeses, like brie, they would be good to add to your diet. Otherwise other fermented foods like various types of vegetables, sauerkraut best known but by no means only, will help keep your microbiome healthy, and this will also help maintain the balance within which your bones need, including even helping to make small amounts of that necessary Vitamin K2!
But to go back to exercise. You could consider taking up Nordic walking as that improves upper body strength. Tai chi improves balance and has actually been shown to improve bone density, and wearing a well-designed weighted walking vest can also be helpful. I have one which enables me to increase weights by just a couple of ounces at a time. It is much more comfortable than a heavy backpack! Challenging the bones triggers them to make more bone, increasing the density.
Thank you so much for your reply & diet/supplement suggestions. I'll get back to the fermented foods: a naturopathic doctor recommended them to me last year. Wasn't aware about vitamin k so will check that out.
I will also follow up with your nordic walking advice. I've actually seen a group near me whilst I'm dog walking & looks like great exercise (love anything outdoors) so v much appreciate that! As an avid hiker for years, could be just the right thing.
Do you know if ankle weights also help? I heard within the last year an item on Today programme Radio 4 about a small scale research project where people taking alendronic acid had more minute bone problems than those who didn't. Haven't been able to find more info on this.
Thanks for useful info on this site. By the way kefir is easy to make cheaply yourself at home so no need to buy.
I don't know about the ankle weights although I don't know why they wouldn't be helpful provided you don't have any other health issues which might trouble you (bad knees?). There is a technique recommended called heel drops where one stands on tiptoe (can hold onto a chair) and drops the heels down hard, to create an impact. I don't do this because I have some other back issues, arthritis and such, but apparently it can be very effective, and a lot safer than a trampoline!
The alendronic acid issue is finally becoming more commonly known. See my reply to linziej where I describe how aa works.
I damaged my foot, not using the ankle weights, but doing the "heel drops" as you describe and was out of action for any exercise for a number of weeks, which really annoyed me!.
We must be so careful when deciding what exercise to take on to combat OP. I learned my lesson. Should have known it may not be ideal as I have bad joints and OA to add to the mix.
Oh dear, that sounds nasty. I have to avoid jarring my spine because I have quite severe osteoarthritis in places, so I've never tried them. But some people swear by them! Never thought it could damage feet as well. My poor feet give me no end of trouble already so perhaps just as well I never experimented. I'll stick to walking and tai chi!
My doctor has prescribed me AA for low bone density. I have been on pred for a while. I am only 39. So far I have refused to take it but she said I need this med to take the nutrients to the bones. Do you know if this is right. I take calcium and vitamin d. I also bought a treadmill for weight bearing exercise. Any advice is much appreciated.
Linziej, I think you should talk to the national osteoporosis society regarding this specific question. However, to the best of my knowledge, alendronic acid has nothing to do with getting nutrients into the bones. In fact I understand it's very important that the levels of calcium and Vitamin D be optimum before initiating treatment.
Did you have a DXA scan and if so do you know your t-scores?
There are two types of cells which are key in what's called bone remodelling. This is a process which takes place throughout our lives, where osteoclasts remove old bone and new bone is made by osteoblasts. When we experience bone thinning it's because the 'clasts are more active than the 'blasts and remove more bone than is restored. Alendronic acid and related drugs (bisphosphonates) work by inhibiting the action of the osteoclasts. They do not, as far as I know, encourage the osteoblasts. Because of this there will be an initial improvement in bone density. But because old bone is no longer being removed it will gradually become more brittle, hence the risk of atypical femur fractures rises, for example. There are other side effects as well, many of them can be dealt with but others are serious. For that reason it's now thought that one should only be on a bisphosphonate for two or three years in order to gain the most benefit and avoid most of the bad effects. Because of your relatively young age I'm concerned that your doctor would consider this treatment appropriate. It's more appropriately used as treatment of last resort for people with very bad bone density and normally older patients.
There are other drugs. Just in case your doctor is insistent, and makes other suggestions: Denosumab is even worse than basic bisphosphonates because it actually poisons the osteoclasts. As they're also part of the immune system I'd be very concerned about this aspect, if nothing else. There is also a drug, a manmade version of a parathyroid hormone (teriparatide - brand names forteo/forsteo) which encourages the action of osteoblasts. This is only approved for use for two years as there are questions about its safety because lab animals (although not humans in trial) developed a type of bone cancer. Some people have also used strontium supplements, either natural strontium citrate or patented strontium ranelate, soon to be withdrawn. Because it's heavier than calcium it gives the impression of increased density but I don't know if it's ever been shown to actually improve bone strength, which, at the end of the day, is what we want.
Although pred can cause bone thinning, in my case I think it was a final insult after a couple of years of other incidents, it's still possible to improve bone density solely through the use of diet, supplements (Vitamin K2 !!!) and, most importantly, appropriate exercise. It's a great pity that doctors do not recommend natural methods before suggesting drug treatment.
Salsa, here is some reading for you. I don't think one has to follow the particular protocol described in the study, but what the study showed was that micronutrients improve bone density. Perhaps a place for you to start as you consider what's best to do?
PLEASE Talk with a rheumatologist and your gyn about this and don't read too much on the web for information. I had osteopenia and had a scan every year or two until I was 65. Last year I fell and a MRI was done on my spine where a fractured vertebra was found within three days of the fall. (The vertebra had not collapsed and was mended by a vertibraplasty.....injection of a medical cement compound that hardened around the vertibrae like a permanent brace.) My rheumatologist saw this first fracture as the alarm button to start me on Forteo injections to encourage my body to produce more new bone than the old bone it sluffs off naturally....to strengthen any place where my bones may need it.
Forteo is currently the only medication available to stimulate your body to produce more new bone than the amount of old bone you lose.
All the other medications available now are designed o discourage your body from sluffing off old bone so that you are not losing more bone than your body is producing to replace it.
Some of these medications can have serious side effects, like possible loss of jaw bone (Prolea). Please see your dentist for a check up and any dental work you may need before you start any of the medications.
At the first sign of a possible fracture, etc., ask about getting Forteo. At this point no medications that I know of mends fractures or stops the pain from them as they collapse.
Forteo is expensive but Eli Lily that manufacturers it has a team that works with your insurance to help you get it.
My very best wishes to you for strong bone for many years to come.
Sos sorry to hear about your fracture & experience with forteo. I'm hoping to avoid the med route at this point, but definitely if needed in the future its good to know about.
Thank you for your words & wishing you strong bones & good health also!
No, No, No,.....I am fortunate. I have the medication that will help if any is. I took preventive meds since my 40's...and my first fracture was not till 66 when I had the audacity to fall down hard when rushing to do something.
My point is HAVE A DEXIGRAM DONE AGAIN....every year or so . This way a rheumatologist can follow you and pick up if your osteopenia is getting worse or better and you can adjust your lifestyle accordingly.
You have already been diagnosed with a possible bone condition when the word "Osteopenia" was used.
I inherited my situation....can run in a family. My sister is still in the treatable osteopenia stage. Two others are younger. I swear, I don't know when doctors determine osteopenia BECOMES osteoporosis.
You mentioned that you fractured at 66, and that you were osteopenic and had been scanned every year. Had your bone density reduced significantly?
I am also interested that you have been prescribed forteo, did your consultant say what treatment you will be having after. I have heard that the bone changes although significant do not remain without reinforcements and that you can only ever have it the once is that true? It does very much seem the US treatment of choice.
It is great that you have such a forward thinking consultant. Good luck and I will be very interested in your progress
First I am fortunate to have a teaching rheumatologist professor at a good university medical school in Tampa as my physician.
My dexgrams were showing slight decreases in bone density several years ago, but the rheumatologist was not very concerned. Instead, he took me off meds to give my body a "vacation" for two years to see how I would do without them.
The fall and discovery of the fractured thoracic vertebra happened before the two years were up.
There was no discussion about the difference between the last two dexagrams. The rheumatologist saw the red warning when the location and type of fracture was found.....regardless of what the dexagrams showed. He is a very polite and caring physician, but he made it extremely clear why the Forteo (Forsteo) was THE medication he wanted me to take.
Forteo can be taken for only a total of 24 months during one's life time, as that was the period of human testing done before the USDA approved it's use. I may only need it for a year in the beginning and then stop for awhile. Then take the remainder later if needed.
What happens after the 24 months of Forteo is up to what my doctor thinks is appropriate for me.
(It does not include Prolea) One "maintenance" medication may be an infusion type of med once a year, etc.
Yes, the big question is always "What after Forteo?"
The answer is we have to see what results I get from Forteo first.
Bottom line osteoporosis is a lifetime maintenance concern.
I am going to throw out the cost now. So don't faint and I hope you can take a mortgage out on your house. The retail cost of one 28 day pen of Forteo, without including the needles, is $2400-$3,000 in Tampa, FL where I live. Insurance plans fight like he** not to pay for it, and when they do the co-pay can be over $1,000 a pen.
As I may have mentioned before, the two women from the UK who posted they were getting it was really because they were so badly fractured, it looks like Forsteo was provided as a med of last resort. But that doesn't make sense medically. Forsteo cannot heal fractures, help collapsed fractures, nor stop the pain. My "uneducated" guess is the COST was the reason those women didn't receive it after their first fractures when it could have done some good.
My age, that fact it was my first fracture, that the fracture was surgically "mended" within three days of the fall, and that it was a thoracic fracture fit the exact description of the woman/man Forteo was formulated to help to prevent future fractures. The results on the web are impressive when compared to other types of meds available.
It took me three weeks of nonstop reading, info research, telephone calls to the Eli Lily Forteo department, i.e. before I decided to take Forteo.
I think made the right choice for me. I'm on my third pen now, and at 5 p.m. I have gotten adjusted to injecting it. The needles are very small and sharp...not painful. It's kept refrigerated, and can travel well as there is enough time it can be kept cool, but not refrigerated to make ship or air travel possible.
The rheumatologists are the experts in osteopenia, osteoporosis and Forteo, not the GPs or GYNs.
Whew.....I hope that gave you the basic education that took me over three weeks nonstop to learn.
Oh, and some calcium and D3 are the only dietary supplements I am to take with Forteo, and it can cause excess calcium in the blood stream.
There are other things I know, but believe you have the main points.
Thank you so much for your reply. Hopefully you get plenty of vitamin D with that lovely sunshine in Florida, my daughter's boyfriend is from San Francisco so not too far away from you!
Forteo is very expensive but without health life can be very difficult. I am looking forward to following your progress.
I have not reached the stage of fracturing as I'm only 58. At 40 I was diagnosed with T-1.9 in my spine, I decide the way forward was diet and exercise I was rescanned recently to discovered that my spinal score is now t -3.1. As age is the defining factor for fractures with osteoporosis I know that I have to consider medication seriously. Obviously not forteo but I may need to consider it in the future.
It is lovely to be in communication with you and good luck with your medication
Thank you, and best wishes as I have left this venue.
Some information presented by another venue member is absolutely wrong. One being that the results of lab rat studies is the reason for the limitation of time for the use of Forteo. I have been on the phone with the Eli Lily Forteo osteoporosis department for about two hours this morning. I was not talking to lay people. Time was taken by Eli Lily to correctly explain some other information that is posted by this same venue member. I simply don't trust the information being posted on this venue any more, no matter how knowledgeable the poster believes she is.
About Tampa, yes we have the sunshine and the tropical rains, but also the tropical heat. lol
I love San Francisco area and have cousins there......but unfortunately it is over 3,000 miles from us.
We are only offered Forteo in the UK after a fracture, which I believe is false economy. I have just seen a very eminent professor who advised me that the cost of the treatment with Forteo is £5,000 which is why it is only offered after a fracture and to those in a higher age group! Surely, the cost to the NHS for the treatment of fractures, time spent in hospital etc would be considerably higher than prescribing this bone forming medication in the first place! This is the medication I asked for as I want to increase my bone mass before it decreases further, as I understand Forteo can increase bone mass by 18% why should I have to wait until my bone mass has decreased so much that I get a spinal fracture. I am unable to take AA and the medication I have decided on is one that does increase the risk of DVT and stroke so not a great option.
PTSDforyears is quite right to point out the dangers of many of the bone medication. I should have said, because of your age you probably do not want to take any osteoporosis medications if you can help it. In fact they are no longer recommended for those with low bone mass (aka osteopenia). It is now known that bisphosphonates in particular should not be taken indefinitely as after only two or three years the most benefit will have been achieved and the risk of bad effects goes up. These heavy duty medications are best left as treatment of last resort for those who are in dire straits. You are relatively young and the chances of diet, supplements and exercise being of most help to you are great. Have a look at this article:
A study done which showed that micronutrients can indeed improve bone density.
I have improved my bone density from -2 to -1.6 in one year, despite being on prednisone, simply through diet, supplements and exercise.
I think the jury is out on whether HRT helps bone density directly, but it's not in the same category as bisphosphonates or teriparatide (forteo), a manmade parathyroid hormone.
Why did you have a dexa in the first instance? At least you have had a warning being diagnosed with osteopenia rather than osteoporosis, as I was. You can try to make changes now.
I appreciate you will not be taking dairy food but there are plenty of other foods that contain calcium, soy milk, cheerios, white beans, black eyes beans, kale, blackstrap molasses, canned salmon, canned sardines, dried figs, bok choy, almonds, oranges, sesame seeds etc. You should get your Vit D levels checked out and probably take Vit D daily. Your GP will offer you a calcium/Vit med combined but if you can get enough calcium in your daily diet, that must be a bonus don't you think? I am prescribed a Vit D tablet daily but prefer to eat calcium rich foods daily. Vit K is good to take and magnesium and boron if you do not like to eat too many prunes daily. These tablets would have to be purchased by yourself.
Dog walking is great as is walking generally. Swimming is good exercise but not weight bearing nor is cycling unless you are going up steep hills or cycling with your bottom off the seat!
Hi Kaarina yes I'm in London. The scan was ordered via the gyn department where I go to get bio identical HRT. Because I started perimenopause early (41) I suspect that's why the scan was ordered. As someone who's been very active all my life & eat pretty healthily, came as a bit of a shock!
I do take a multi vitamin & D3 supplement (my D levels were measured recently & it was pretty good at 84).
Thank you for all the food suggestions - will get on with some dried fruits & also the supplements.
You are correct. Weight bearing exercise is beneficial.....the fun, but non-weight bearing exercise like swimming, is not weight bearing. But nice way to hopefully keep weight down.
Look, I was asked questions about Forteo, my history, and so on. I answered them as openly as possible. I do not know who you are or why you have chosen to attack me. And have no idea what the 2.5 you are talking about.
Don't be concerned about responding to me or defending your attitude. Life is too short.
I'll never open another post or reply in this venue again.
Hi there - hope everything is okay. It looks like a post might have been deleted, or someone has upset you? This forum is such a great place for people to share their experiences, but as with any health condition that affects people in different ways, people will have differing opinions.
Feel free to get in touch if you'd like to chat. Our specialist nurses are here, and ready to take your call 0808 800 0035 or nurses@nos.org.uk
I have withdrawn from the venue, and had to open the "follow" in order to answer you. I will close it again. I'm in the US, so a call to GB is out of the question.
I shared about as much info as I know openly about Forteo to answer an inquiry a member of the venue.
I know better now, let people do their own research, because if someone else decides they are an expert in this field, I get hit with more personal questions about my medications and health history than I want to share. There are other reasons that I feel Forteo is the appropriate medcation for me due to some other medical issues that I just didn't think I wanted to share. Enough is enough.
This same venue member also in one her extensive educational posts explains erroneously that the Forteo is only used for 24 months because in lab rats some developed a type of cancer. I know that can be a potential side effect, but none has been reported in humans who have used Forteo which was first released in 2002. And this not the reason Forteo is limited to a 24 month total use.
Just be certain I was really wasn't crazy, I called Eli Lily Forteo department immediately, because to my knowledge it is only prescribed for a total of 24 months is that was the length of the study of humans before the USDA approved it for use.
Eli Lily wanted to know who was publishing the erroneous "rat cancer" reason. The company WAS NOT happy and was taking that statement seriously. Wanted to know who was publishing/disseminating this information.
Very much appreciate everyone's input & suggestions to my questions. It seems things went slightly off tangent so I hope we can move on & appreciate one another for our differing views.
Vanessa x
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