Had a difficult apptmt with consultant recently. One issue - he wants me to start on Alendronic Acid (I have OP incl one spine fracture) but I want to consider alternatives first.. I queried whether I could pay privately for a course of Teriparatide (I wouldn't be eligible under the NHS) and then be re-assessed after that (bear in mind it's highly unlikely I could ever afford this but I still wanted to consider it). He said this wouldn't work as after the course of Teriparatide treatment I'd still need to start on a bisphosphonate. I found this odd as surely Teriparatide gives some permanent improvement but would welcome thoughts or sources of information. The remaining drugs for OP wouldn't be suitable for me because of other health issues.
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ranne21
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It sounds like an ideal question to pose to someone on NOS' helpline as they would be able to advise you about its usage and implementation as well as discuss your situation in more general terms:
Phone: National Osteoporosis Society 0808 800 0035
Thanks for the threads. I'd already read bits but hadn't read it all - very useful background.
Hello....where you live makes a difference in what meds are available to you. And whether you can afford a second mortgage on your house to pay for Forteo (Forsteo). That was a bit of humor to try to lighten the realities of osteoporosis.....which requires a lifetime of maintenance and adjustments in life.
I live in the US and am using my second pen of Forteo. The results of Forteo (Forsteo) in test studies and for some woman have been very, very good. THAT IS NOT A GUARANTEE IT WILL BE FOR ME OR ANYONE ELSE. I am not a doctor.
Teriparatide (Forteo in the US and Forsteo in England) is a medication by Eli Lilly in the US. Retail price in my state of Florida in the US is $2400-$3000 per pen with 28 day supply of Forteo, not including the needles you will need for the daily injections.
In the US where I reside near a medical school, my doctor is a Professor and rheumatologist, His opinion was Forteo was the medication of first choice after my first and only, so far, vertebral osteoporosis fracture. His second,but not favored choice was an infusion medication which, thank goodness, I did not have to consider when I managed to start Forteo.
I am learning from women in England that it is not necessarily the first choice of medication after an osteoporosis fracture.......Several who have posted on this venue were prescribed it only as a drug of last resort, well after a number of fractures have occurred and they had been prescribed other medications, but their osteoporosis progressed.
Forteo(Forsteo) is not the all cure all magical medication...it must be taken early enough after the first indication of a fracture to have an opportunity to do it's best to encourage your body to produce the desired new bone growth to prevent or limit future fractures.
It is the only medication world wide at this time (since 2002) that is developed to encourage your body to produce new bone matter. It appears from what I have learned from various specialists, etc., the more fractures you have, the more work Forteo has to do to encourage your body to prevent ftre fractures. In other words, if Forteo can't necessarily mend existing fracture, but can lower the odds of the progression of fractures.
Doctors aren't certain what will be the next course of treatment after Forteo.....depends on the patient, the progress on Forteo, etc.
My best wishes to you in your decision of what to do....but please find out information on any osteoporosis medication prescribed for you. A popular one can cause the loss of jaw bone and loose teeth as a side effect. ( Forteo caused some test lab rodents to develop cancer....but not in human test study group)
The other medications are designed to try to help your body prevent more bone loss to the best of your body's ability.
The big question is always, after taking Forteo for the maximum 24 months total in your life time, what comes next to treat osteoporosis. That will be up to how well your body responds to Forteo,ie., how much new bone growth or increased bone density where your body needed it, and so one. It is up to your doctor to determine that. You may not need the entire 24 month limit at one time. You may take for a year or so, have good results, be on vacation from it and resume it for the remaining months left from the 24 months limit.....
Don't know if you have read any of the other posts about Forteo, but you may want to read them, or look up Forteo (Forsteo) on the internet to learn more about it.
At the same time, check on the internet for the other medications for osteoporsis to learn what they can achieve, as well as side effects....Please learn about the possible side effects of the one being rescribed for you.
Many thanks for your detailed reply, that's helpful. I've spent some time reading up on the various options and mostly understand the risks. I wish teriparatide was affordable for our NHS but it isn't offered to patients like me presumably owing to the cost. I still wanted to consider it though and will speak to my GP about it as he is good at discussing options with me and understands my concerns about all this. My consultant on the other hand seems to think his role is purely to tell me what to do!!!
What are your t-scores? Whether you take medication or not, and it sounds like you have decided you must take something, please also do all the natural things in order to help your body make new bone. None of the meds should really be taken for more than 2 years - they have been constantly lowering the suggested time for taking AA for example. By that time your body will have gained the most benefit from the drugs, and will hopefully avoid the serious side effects. As bisphosphonates stay in the body indefinitely there is no problem taking a "drug holiday" at the end of the two years, and I understand Forteo is only approved for a two year course anyway. Theoretically you should be able to increase your bone density through nutrition, supplements and appropriate exercise so your doctor may be wrong that you will need further treatment even after two years on teriparitide.
My T score is -2.5 in the spine (one fracture) and -2.0 in the hip. I'm really keen to use natural methods to the extent I can. I'm trying to find a form of exercise that I actually enjoy....My consultant said that exercise etc is 'small print' and that there was is no benefit in taking K2. He said I'd be acting 'against medical advice' if I continue refusing to take alendronic acid but is rather missing the point that I simply want to work out how best to handle all this and may well take the drug after looking at all the various options and weighing up the risks.
I'm actually shocked that you are being recommended AA when your scores are as they are. In fact current recommendations are that people with osteopenia or low bone mass NOT receive bisphosphonates. The level, rather randomly determined by the WHO some years ago, is 2.5, so are barely into the zone considered osteoporotic. There has been research done to show that micronutrients are beneficial in improving bone density. And you can be reassured that when you hear from me you are hearing FIRSTHAND, not hearsay, that diet, supplements and appropriate exercise can improve bone density as quickly as any medication and without any side effects - except generally better health! Perhaps not fair to blame the doctors, they can't be expected to keep up with all the research, but I think it should be a given that when someone is borderline as you are the first line of treatment absolutely must be natural means.
Exercises can be a simple as walking, Nordic walking even better. Wearing a weighted walking vest. Tai chi. Some forms of yoga and pilates.
In one year, despite still being on steroids for treatment of polymyalgia, I improved my femoral neck score from -2 to -1.6. I personally know others who have done this, including a friend who got me started on the right path by telling me about Vitamin K2 and Nordic walking.
My t scores in 2012 were: +0.8 (spine) and-0.5 (hip) The NOF T score -1.0. Looks to have some compression at L2.
My t scores in 2015 were total spinal t score is +2.5 but this figure is unreliable because of scoliosis and degenerative changes in the spine. Total hip t score is -0.7 and neck of femur is -1.4.
The scans were done on different machines.
Between 2004 and present day I have lost 6 inches in height.
With those t scores, in your opinion, should I be on any OP medication?
I have no medical training, and can only go by what I've read and the experience of others. The latest recommendations appear to be that if one is only diagnosed with "low bone mass" aka osteopenia, osteoporosis drugs are NOT recommended. The main reason is because the drugs cannot be taken indefinitely and it's better to save them in case they become absolutely necessary. Some doctors don't seem to know that the latest recommendations are for 2 to 3 years on a bisphosphonate, but considering that class action suits against companies like Merck are being settled out of court in favour of complainants who've suffered serious, life altering side effects, I think we should all be erring on the side of caution. After two years one has probably achieved the most benefit from a given drug while hopefully avoiding any of the bad side effects.
But as it's entirely possible to improve bone density by taking a few supplements, eating a bone friendly diet and getting as much appropriate exercise as possible, I can't understand why the doctors are not recommending this as the first line of treatment, especially for people like yourself who appear to be borderline.
I also had some scoliosis, but mild, and my physiotherapist has been helping to straighten me out! I think the best thing about this is because my spine is straighter I'm not placing as much stress on everything as I was when more out of line. I certainly have far less back pain now, and occurrences are much further apart and last for less time. She did say she'd give me back some of my lost height but I think the best we've achieved is to stop any further loss.
I appear to have lost over two inches in height, and I don't really know why, but I suppose the discs in my spine are gradually compressing. Age and gravity, definitely no fractures.
Thank you for replying, HeronNS. I have had scoliosis since the age of about 14 and nothing was ever done about it. I did see a scoliosis specialist a few years ago just to discuss how bad it may get.He said if I was to begin to suffer great pain (which I do not, thank goodness) he could operate but it would be very complicated. He told me my body had adapted to the scoliosis (I also have a LLD ) and he was quite surprised how I managed to walk without a stick. I have always exercised which I feel may well have helped me. My mother had OP and lost a lot of height.
Thanks HeronNS. It's tricky.The earlier fracture won't have helped and I was told that once my vertebrae start to fracture they can go in succession fairly quickly, hence it's unwise not to take a medication. I might ask to get referred somewhere else, if only I knew where! I'll talk to my GP. He's in two minds about the AA, and so am I.
I have been told similar regarding my spine from the OP doctor I see in the endocrinology department. I only got to see him because I asked my GP if I could be referred to someone. My GP is not up on OP, like most of them unless they have a particular interest in it. I have my third visit to see the OP doctor in October.
this is a very interesting response, after bad reaction to weekly alundronic acid I have been prescribed Ibandronic Acid to be taken monthly, I'm a firm believer in the natural way and exercise and these tablets have been sitting in a cupboard waiting for me to take decision whether to take or not. My personal opinion is that no one really seems to know much about OS, if you ask the rheumatologist a sensible question you very rarely get a sensible answer, why oh why isn't the drug fraternity investing more money into research, natural and medical for what is such a widespread and very 'scarey' condition
thanks for your reply, unfortunately money does talk but ultimately its a false economy as nothing seems to really wori the new medication I habve tells me that it only works on the sine and then nothing is guaranteed, perhaps we should be lobbying our health trusts, kind regards
Hi HeronNS very interesting article. I'm already taking D3, calcium, K2 and trying to eat a bone friendly diet as well as walking a couple of miles a day. After reading the article linked above, I searched to see if I could get strontium citrate in the UK, and found this (later) article warning against the use of this supplement. What do you think? news-medical.net/news/20140...
I wouldn't take strontium. I believe though that if a person had been persuaded to take it, citrate is better than the manufactured ranelate. I post the article not so people can try to emulate what was done in a clinical setting but to show that nutrition does improve bone density even though many doctors think you absolutely have no choice other than the meds.
Thanks Kaarina. I followed the link to 'Nordic Walking' that you sent me. I had no idea what it was or that it would be so popular and so well organised.
I am tempted to go on a free Taster Session but feel very nervous about it. I am afraid it may be too much for me physically now. Pity I didn't know about it 10 or 15 years ago. My husband and I used to love walking so I'll think about it but I'm very apprehensive.
We learn something every day! I have never done it but see quite a few people using them around where I live. I think I may well get mixed up with which pole to move with which leg. I know I never got on with using two crutches after a knee replacement and almost immediately transferred to only one! Go for it, let me know how you get on if you do try. Easy for me to say isn't it?
Kaarina, usually there are free workshops offered so people can learn to use (and buy!) poles. It only takes a few minutes to learn the technique. I thought I'd feel like an idiot, but was determined to improve my bones, so went to a workshop, bought top of the line poles, and started, and turns out I'm a natural and quite enjoy it. Sometimes people stop to ask me about them. No one mocks me, at least not to my face, and there are more and more people using them. I try to have a walk at least three times a week using them. I'm sure they've helped straighten my back and strengthen upper body. They do make you use more calories which is a bit of a problem for me as I've lost a lot of weight, but for most people that won't be a worry. I just need to eat more!
WaryMary, a friend of mine who may be well into her 80s was getting very bent over with osteoporosis. She now uses these poles. She has definitely straightened up a lot. She is not capable of using them quite the "right" way, but with the help of the instructor she manages, and he considers her a star pupil! The advantages for us older folk are many, and include support for those who may have balance issues.
I am very interested in your story and comments. I have been diagnosed with osteoporosis and have 'superior endplate fracture of T11 & T10 of the thoracic area'. I have been prescribed Alendronic Acid and Evacal D3 but do not want to take either. I am vegetarian and do not like the ingredients in Evacal which also includes aspartame. Are there alternative organic supplements I can take? Also I have digestive problems but my GP still prescribed AA. I have always been active dancing and walking everywhere but there is a family history of Osteoporosis. My GP said he hadn't got time to discuss "alternatives, and that was the NICE guide for treatment" ........****!!!
Sounds about right, your doctor's reaction. I am afraid doctors appear to be instructed to dish out AA and the combined calcium/Vit D Pill in the first instance, whatever the patient's other health issues may be.
If you get enough calcium in your diet there is no need to take calcium in tablet form. Good idea to take the Vit D capsule though. This is what I do. So far the GP prescribes the Vit D capsule for me - I know some do not, depending on where you live.
You can always call the helpline at NOS and speak with a nurse should you so wish.
Quite a few of us take magnesium, Vit K2 and boron. Exercise is of course important too - preferably weight bearing.
I asked my doctor to be referred to a specialist and I now see a doctor in the endocrinology department which I find helpful and also do not feel totally alone to "get on with it". A little bit of reassurance - after a fashion...
Kaarina's got the right advice. Regarding calcium supplement, where I live (Nova Scotia, Canada) it isn't a prescription and isn't covered by our drug plan so I am on my own. I get a calcium citrate supplement from a health food store; it includes just a handful of the other things we need, so I also take an oily Vitamin D capsule every day. I only need 1000 IU of the D, but many people take 2000. Remember not to take all your calcium at once. Take it with a meal, preferably with something like citrus fruit, or possibly a tablespoon or so of yoghurt, and no more than 400 or 500 mg at one time. It also doesn't mix with some medications so if you are taking medication for any other conditions check that it's okay. I'm on prednisone for PMR and pred and calcium actually interfere with each other!
I hope I'm getting enough boron from the five prunes I eat every day, and I also take a Vitamin K2 supplement.
And do as much appropriate exercise as you can manage!
I have had 7 spinal fractures and was put on Forsteo for the 2 year period, they finished January 16. In the first year I increased my bone density by 8% and 7 in the second year. I was over the moon. However, 18 months on, I am back to where I was before I started on them, however, no more fractures thankfully. It is thought to be the wonder drug but it looks like the improvement is not permanent.
I'm sorry to hear that but it's at least good that you've had no more fractures. I wish I understood better how all this works and to what extent bone strength is affected by factors other than just density...?
This is why I think people need to be encouraged to do all the natural things as well as taking the drugs. That way the body is given the materials it needs to make new, healthy bone, and can maintain or even improve upon any benefit the drugs can give.
Yes, even if I end up taking a BP (and I'm not at all sure about the wisdom of that) I'll definitely follow the natural support route as well as it does make sense.
I've just had a terrible fall, which I have posted about. I have been on Forsteo for 18 months. It is my last hope. I've had a dexa scan but I don't know the results. One good thing is that the surgeon repairing my hip said that it was in better condition than he thought it would be. I'm in the worst percentage for osteoporosis and I've had many Breaks. You need to take the injection at roughly the same time as otherwise it can be very painful in your worst affected area, for a while. We nearly had to call an ambulance the first time. It did lessen daily after that. I took paracetamol beforehand. That really helped. The first time, the nurse was there overseeing things. He was useless. He'd never seen the drug being used. Anyway, we looked again at the directions, and it states that the pain can be so bad that an ambulance needs to be called, which we had started to do, but it then lessened and I was OK. I'm sure it doesn't happen to everyone, but I think when it's taken it might be worth taking pain killers at first. I'm not sure what I do next. Good luck 🍀 xxx
Hi ranne, how you are getting on as it is a year since your posted about Teriparatide (Forsteo). i am wondering if you did start this drug or not.
At an OP branch meeting yesterday I learned that this drug costs £3252 per year but that is only for the actual drug and not all the admin side of things that apparently goes with it. No wonder it is not common to get this medication prescribed for two years to patients.
No I didn’t start taking it. I keep changing my mind but haven’t started on Alendronic Acid either. I got a referral to a bone specialist who (as you’d expect) recommended AA, but I still don’t feel sure about it. I’m probably going to leave things another 18 months then get the DEXA scan done again, but it’s hard to know what to do. I feel in a bit of a quandary to be honest.
We are always offered AA in the first instance because it is by far the cheapest OP drug.
I learned recently at a talk at an OP branch meeting that there is a liquid form of AA called Binosto. This is for patients that cannot take pills very well, for whatever reason, but it still has the same possible side effects. It costs £273.60 per year so is not offered too readily.
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I only got to see him because I asked my GP if I could be referred to someone. My GP is not up on OP, like most of them unless they have a particular interest in it. I have my third visit to see the OP doctor in October.
I have never done it but see quite a few people using them around where I live. I think I may well get mixed up with which pole to move with which leg. I know I never got on with using two crutches after a knee replacement and almost immediately transferred to only one! Go for it, let me know how you get on if you do try. Easy for me to say isn't it? 
FORSTEO, TERAPARATIDE, AND BONE LOSS.
