I will be 61 in a few weeks time and was diagnosed with osteoporosis of the lumbar spine 6 years ago. I have refused drug treatment to date due to the side effects of treatments on offer but also because of the risk of increased fracture once off these treatments. However, my latest DEXA shows a T score of -4.2 in the L4 disc of the spine and I may be considered for teriparatide. Any thoughts/experience of this drug therapy please? I understand that after two years on teriparatide, one dose of zolendronic acid is compulsory, a drug which I have to date managed to stay clear of. Any experience/thoughts would be most welcome. I walk c. 10 miles a week and do tai chi. I also take vitamin D in emulsion form and a marine based Cal-Mag preparation. I have had no fractures to date, fingers firmly crossed. Thank you
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Mistydawn
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I have quite severe osteoporosis and have refused treatment up until now. A consultant is now offering me Teriparatide which I will agree to at appointment next week - the worst side effect seems feeling nauseous. I understand that the treatment helps you to grow new bone (rather than stop losing old bone) and this is permanent. It won’t cause rebound fractures like some infusions. I have discussed following on with strontium, if necessary. I had a compression fracture 6 months ago due to heavy lifting. I had been given the wrong Dexa results and didn’t know how bad my bones were. I don’t understand why you are told zolendronic acid is then compulsory - different to what I’ve been told.
I don’t think it’s a very widely used treatment (expensive) and when I posted I didn’t get many responses.
Do keep posting how it goes. I think it’s the best option.
Thank you Snowybear for responding. I will ask the question re: zolendronic following Teriparatide as like you I have been resisting drugs for almost six years now. Again, as you say Teriparatide is one I would consider due to the reasons you give but the zolendronic afterwards has put me off, the very drug I really do not want in my body. It would be great to keep in touch and share our experience if you would like to? Thanks again
Yes, indeed. Will do.. for a number of years I saw a Dr who said I could improve density with supplements. The next scan was worse and she blamed low stomach acid preventing absorption of minerals etc. I gave up at that point - I was spending a great deal for no benefit. I hate the idea of putting z. Acid in me (nearly as much as I hate the idea of attaching myself to gym equipment!). I walk a lot and garden several hours most days.
I'm on teriparatide,started almost a year ago. My dexa scan showed quite severe osteoporosis of the spine -5 and I had 1 definite spinal fracture at that time.
The treatment involves daily injections which you do yourself. It's very easy using alternate areas every day in lower abdomen and thighs. The medication has to be refrigerated.
I was doing ok initially on it with just nausea as you said. Over time I had bowel problems that were tricky to manage and I also got pains in bones.
I was told this was unusual and to stick with it. I eventually decided to cut down on the frequency of injections as a trial to see how the side effects would be.
I do around 3 injections per week but I'm not suggesting anyone else steer away from the recommended daily doses, it just seems to work for me to control unwanted side effects. I will be having another dexa scan this year to check on progress so I'll see how things look.
Good luck and I hope you do well on it as it does seem to be one of the most effective treatments around. You'll get used to the injections quickly. You can get a travel cool pack so you can take it with you safely if you go on holiday ( covid rules relaxing now )
Thank you Maguragirl, the frequency of the injections is one of the questions on my list to ask already as being petite it is possible that the standard dose is too high as I found out with abatacept for my RA. In the end, and with agreement with my rheumatologist, I now inject this once a fortnight as opposed to weekly.
I'm petite too..I actually never considered this re the dosage but that sounds interesting. Just be aware that your doctor will likely oppose you changing the dosage routine ( mine did ) but I think medications can affect individuals in different ways so one size doesn't necessarily fit all.
I now have 3 fractures but this happened before I reduced the dose so probably just unlucky. I do have a strenuous work routine so it's probably not helping, but until I find something else I have no choice.
Just be extra careful lifting and bending etc, and also I find stretching to reach something high isn't a good idea either.
Thank you! Yes, abatacept was a wonder drug in controlling my RA so was reluctant to give it up completely. Thankfully my lovely rheumatologist at that time was understanding enough to hear me out. Never looked back...
Hi there - I’ve just started year 2 on teriparatide and have had almost no side effects. No idea if it’s working because I’ve not seen the bone clinic consultant again due to covid.
I have 5 compression fractures - my osteoporosis was diagnosed far too late due to hopeless GP practice and the teriparatide definitely helped with the awful back pain and muscle spasms.
I was advised I should probably have zolendronate infusions annually when I’ve finished the teriparatide but telling you it would be compulsory is ridiculous! No-one can force you to have any drug. I’ll make the decision taking into account any information I’m given but also will look it up as I did for teriparatide. It’s very interesting to read the various studies and clinical trials. I’d avoid some of the self help sites (not this one obviously) - there’s a lot of ill informed nonsense out there unfortunately.
Re the teriparatide - you can always give it a go and if you can’t get on with it ask for an alternative. The injections are very easy to do.
Thank you Nuthatch. You must be coming to the end of the two years post teriparatide so it will be interesting to see what alternatives they suggest for you. Would you please keep me posted?
Interestingly, they did not volunteer information regarding what would happen once the two years on teriparatide were over, I asked and was told it was a condition of going onto to teriparatide that I would have to take at least one infusion of zolendronic acid.
I’ve just finished one year so another to go yet. The consultant (who is an arse) did say probably need to go onto zoledronic acid infusions but we’ll see. It’s my decision in the end just as it is yours. Don’t be bullied!
My experience to date is that once you’re on medication they have no further interest in you. I’m horrified at the lack of information available about osteoporosis generally. I had no idea I would be at any risk of it all (and still don’t know why I have it, consultant’s helpful response was that I was “always destined to get it”..).
I’d like to see the ROS campaign for much more public awareness of it and ways to prevent it. And a lot more research into treatments which are properly effective and don’t come with nasty side effects. I believe it’s never been properly funded for research because it’s seen as primarily a condition of old women and we all know how they’re regarded in our delightful society.
I’ve worked as a welfare rights adviser for many years so have come across a huge amount of different conditions and disabilities but not this one once.
I'm with you on all you say Nuthatch. I hate taking medication as it's then a viscious cycle. We are then on it for life plus side effects from one drug leads to have to take another drug to combat!
I was horrified when I learn I had osteoporosis. It's such a difficult decision. I have put off not taking anything for the last 5 or so years but with a reading of -4.2 in the L4 of lumber spine I am getting a little worried.
What's your average spine score, Mistydawn, and your hip score? Decisions about treatment shouldn't be based on one lone score. Also, as you say you're petite, it may be that your bone density isn't as bad as they're telling you (see, for example, imj.ie/bone-mineral-density....
My average spine t-score was -3.5 last year and -3.4 in 2016 so not deteriorated much in 4 years.
Average hip t-score was -1.5 in 2020 compared with -1.2 in 2016.
My argument has always been that I am petite and of asian descent and based on a study of post menopausal chinese women who generally have a lower hip BMB than their caucasian counterparts. This study showed that these women who in theory would be at a higher risk of fracture actually sustained fewer fractures despite their lower BMD.
You're quite right about your ancestry. The FRAX risk calculator tool allows you to input the country you live in, recognising that people of different ethnicities have different fracture risks for the same bone density. If you're of Asian descent, they should adjust your FRAX fracture risk accordingly. This is also relevant to me, as I have olive skin and dark hair, presumably inherited from my French ancestors. If I set the country as France, my risk of fracture drops significantly. You can play around with this on sheffield.ac.uk/FRAX/tool.aspx.
That tiny difference in spinal score in 4 years really doesn't count as a difference at all, as they have to allow for a margin of error. You must be doing a lot right to maintain your score in that way! But just as significant, that's a huge difference between your spine and hip scores, which according to some experts suggests that there's been an error in measurement of one or both scores. If you can find a clinic near you, you may be interested in getting a second opinion from a private REMS scan (gives t-scores in the same way as DEXA, but uses ultrasound, rather than x-ray, and is more reliable due to greater use of automation, which makes operator error less likely). Have a look at osteoscanuk.com/
Thank you very much. You’re being really helpful. The consultant gave me a FRAX score of 14. ?% when setting the country as India which he said was high.
I’m confused re: the difference between hip and spine scores. Doesn’t this simply mean the the spine bones are worse than my hip bones?
I asked for the EchoS and was told it wasn’t as affective as the DEXA sadly.
That's good that he actually set the country as India. As far as whether 14% is high, that depends on your perspective. If you have a 14% chance of fracturing in the next 10 years, that also means that you have an 86% chance of not fracturing. I prefer to focus on the 86%, but obviously how we view risk is very individual.
Your consultant wouldn't consider the REMS scan because it isn't yet recognised by the NHS, although some doctors and consultants are happy with it. You might like to show him the following from the BMJ, just one example of where REMS is more reliable than DEXA: ard.bmj.com/content/78/Supp.... In the conclusion it states "These preliminary data suggest that REMS technique, which has been shown to have high sensitivity, specificity and accuracy when compared with DXA in diagnosing and monitoring osteoporosis ..."
Sorry, just seeing this post now. My understanding is that the benefits of teriparatide will wear off after a couple of years so at least some of a bisphosponate is offered in order to sort of "lock in" the improvement. If a single dose of zoledronate has been proven to be enough, that sounds pretty good to me! If you don't follow up you will likely end up where you were in the beginning, although I do not believe there is the same issue with "rebound" osteoporosis as can occur with denosumab (Prolia). Best of course is not to need the drugs, but if you do, the treatment being offered you does seem sensible and well thought out,
Thank you! Really appreciate your response. I got the impression I would need to take something else after one dose of zolendronic acid so seems like I will be on drugs for osteoporosis for the rest of my life?
Thank you! You are also providing so much useful and helpful advice. Like you, I read a lot when I was diagnosed but maybe not as much as you.
I take a drop of vitamin D3 in emulsion form daily and K2 spray three times a day. I also take a marine based Cal-Mag preparation which is derived from red algae and seawater 3x a day and walk 16km a week.
I’ve repeatedly looked into buying a weighted vest but never seen to find one I think will do the job. Could you recommend one please?
The one I bought is Hypervest. It's the only one I've used, and I selected it because the weights are very small so you are able to add only a couple of ounces at a time. Also it is infinitely adjustable so very comfortable - although not stylish!
Pro! And when I was measuring myself I was right on the line between two sizes. I emailed the company and they told me to go with the larger of the two sizes.
We are all different. I started with a weight I was already used to carrying around in a backpack, 5 lb. I used to do the recommendation, adding a few ounces, usually two of the ingots, at a time every once in a while when I thought of it. It was a bit hit or miss! Unfortunately because I hurt my knee badly last year I haven't been able to carry extra weight all that time, and I'm not quite sure how to get back into it. I shall probably have to take out a lot of ingots and start over, perhaps at 5 lb again.
The important thing to remember is not the total amount of weight you carry, but the fact that you are continually challenging the bones with additional weight. So in fact once you've spent a couple of years carrying increasing weights it is perfectly okay to stop for a few months, then start again at a lower weight and continue the challenge. Bones are not like muscles in that regard!
Best thing is to think about what will be comfortable for you to start with. Someone who has not been accustomed to lugging around a backpack should probably start with very little weight. Anything you carry over and above what you have been doing will help, even a few ounces. Then when you are used to that weight, add an ingot or two. I made sure to keep the ingot arrangement balanced all over the vest, and as I filled it up over time would add weights at the bottom one time, then a few weeks later a couple in the mid section, and so forth. I think I'd got up to just over 8 lb when I hurt myself. It took several years but I was forgetful!
Thank you for the compliment. I would not write a book because I don't have the medical training to back up any of this - it's all from reading other people's writing, and my own experience. 😔 I just hope I can help others who are going through what I have, maybe save them a bit of time when they are figuring out how to manage this part of our aging.
Thank you once again. I would buy your book. As long as you reference where you got your material from and make it clear at the beginning that you are not a medic etc. Your experience would be very valuable.
WbiC, I just stumbled upon this post and noticed your recommendation for Sinaki’s back extension routine. I was able to access the study, but the only exercise I could find was lifting one’s torso from a prone position (which I already do). Is there a link to other exercises? (I know exercise doesn’t work for everyone, but I am very faithful at exercising for an hour before breakfast and I am always looking for additional exercises to improve the spine due to very poor bone density there)
Thank you for clarifying that. I will continue doing the exercise, and hopefully, it will help. (It is so hard to know whether exercise and a good diet is a wiser choice than pharmaceuticals when doctors seem to consider pharmaceuticals as the only option. )
I’m new to this site, and just now noticed your response. Although doing both (pharmaceuticals and diet/exercise) is an option, I’d prefer to avoid pharmaceuticals if possible. I’m not clear on the long term effects and if a reduction in fracture risk now ultimately results in an increased fracture risk later when the meds are stopped (or even when they are continued for a long time). On the other hand, exercise and a healthy diet has no real downside.
I also recently discovered I have Celiac Disease and I’m hoping a gluten free diet will allow my spinal bone density to increase (possibly a shot in the dark, but I need to give it a chance before resorting to meds).
Thank you! I have been avoiding the pharmaceuticals for almost six years now for the reasons you state. However, it looks like it may be crunch time for me. The treatment is pending another DEXA next month and as I understand it the t-score needs to be -4.0 or worse before they would consider me for teriparatide. So fingers firmly crossed that my BMD will not have got any worse since the last DEXA in August 2020 and the L4 score will have improved from -4.2. Wish me luck, ha
I’m not sure what you mean by “being treated”. The gastroenterologist reported that I had Celiac Disease, along with GERD and gastritis. I was diagnosed shortly before moving several hours away so I never even had the opportunity to meet with the doctor afterwards. I completely stopped eating gluten, and the GERD and gastritis seemed to have been resolved with minor diet changes and not eating for several hours before bed. But that’s mostly it as far as treatment is concerned. Should I be doing something else?
I wasn’t even aware I had a problem until someone helping me find the cause for my osteoporosis suggested being tested for Celiac Disease. I never really had gastrointestinal issues (some minor ones I thought were age related) but I was exhausted, anxious, unable to sleep and a little depressed, which I also thought were age related (I’m 63). All that disappeared some time after eliminating gluten and I feel so much better, so I’m guessing they were related to Celiac Disease.
I eat oats- gluten free- several times a week (oatmeal for breakfast), but rarely eat rice. Lots of teff, which seems to be loaded with calcium. I was trying to cut back on oats because of the acidity vs alkalinity issue (conflicting information on where teff is in this regard). I thought I was getting my calcium entirely from food- I love milk- but recently found out the collagen supplement I take daily- OsteoNaturals Fortibone- supposedly contains 500mg calcium. Not sure what I think about that. I think I have a pretty good diet, but sometimes I wonder if anyone really knows what a good diet is as there is so much conflicting information out there. (Eat dairy vs. avoid dairy; eat fish and chicken vs. vegetarian diet). We all know to avoid processed foods and sugar and eat a lot of vegetables, but other than that, it’s a bit unclear.
I’ll try thyme- I actually grow it in the vegetable garden but rarely use it as I just don’t think about it.
Thank you for your response. What is questionable about chicken? I always thought that was a good source of protein (organic, no antibiotic, etc). And why only700 mg/day of calcium? My endocrinologist advised 1200-1300 mg/day.
Teff is an ancient Ethiopian grain. I eat it like oatmeal for breakfast.
(I don’t seem to have any trouble digesting oats- I often eat them raw, with walnuts and raisins!)
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