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Loss of BMD in hips after taking Forteo or teriparatide?
I’m scheduled to start a biosimilar to Forteo in a couple of weeks and I just read a post today from a woman who lost bone density in her hips after being on Forteo. I got interrupted and couldn’t find the post again, so I’m asking the question here as now I’m afraid to start. My T-score in my spine is -3.1 and my hips are -2.8. I’m borderline whether I need an anabolic and the only reason I’m doing it is because I downhill ski, as well as cross-country and backcountry skiing. I can’t afford to lose in my hips. My endocrinologist warned I may lose in my forearm, but she didn’t say anything about losing in my hips. Now I’m wondering if I should not start it and just go on a Actonel, Reclast or Prolia …. Or do nothing! This is all scaring me silly.
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Thank you so much, lynn56!
I too am now in Ontario, and will be 73 next week. My G.P. has been slow out of the blocks, in getting my ducks in a row; but am now making progress in getting ready for 18 April.
My paperwork is now in, and I will see the pharmacist on Tuesday. So hopefully, I will get some direction of which medication I will qualify for [we should have answers by then regarding Forteo or the Osnuvo] I was originally told that the Forteo was $4,000/month.
I too have not had any vertebral fractures, but have had many serious chest infections since starting the Prolia, and was on, unsuccessfully other drugs prior to Prolia. My specialists, Rheumatologist and Respirologist both agree that getting off of Prolia is necessary.
I get on a soapbox about insurance companies and government telling doctor's what they can and cannot order ! I am waiting for my specialist to return from holiday so he can order the CTX and P1NP, as the GP cannot order that, only a specialist. So I am hopeful of getting all of this together before the 18th.
Thanks so much for your input.
I wanted to add to the conversation regarding product and price. I am in India for an extended period of time and decided to check on my Osteoporosis with the Endocrinologist (great qualifications) here. After reviewing my history and my Dexa, he advised me to take Gemtide injections daily for 2 years and then go back on Fosamax.
It is my understanding that Gemtide is similar to Forteo (synthetic parathyroid hormone). I did some research and am now on my second month with no ill effects thus far. The injection costs Rs 4,000 (approx 40 USD) and the pen comes with 28 doses. The difference in price is mind boggling - I don't believe there is a compromise in quality either.
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3 ReactionsHi. My family doctor ordered the CTX and P1NP bloodwork for me. She just said she didn’t know how to interpret it! I’m using Dr. McCormick for that.
Wow lucky you! Please keep us posted on how you do on it❤️
I agree alkaresm... travelling to India for the shot, would still be money in pocket!
Thank you for your input. I will ask the pharmacist re Gemtide. I do hope that all of this will get straightened out in time for the prescribed date!
Hope all goes well for you, while you are away.
Really, the GP ordered them?... and they wonder why patients get confused!
Glad that has worked for you.
I'll let you know how this all works out.
@gently Could you please provide references for your statements about Forteo creating an improvement in bone by slightly increasing porosity. I think I might have once seen speculation that maybe it's ok somehow to have a slight bone loss in hip or forearm with Forteo and that eventually as you get further along in your treatment period the density will increase. My memory is hazy on that and may not be accurate but I don't believe I've seen anything suggesting that any osteoporosis med is increasing bone strength while decreasing density.
Regardless I'd love to see references showing that bone loss in the hip or forearm with Forteo is really ok. Thanks
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1 Reaction@lynn59 Deciding what to do after seeing bone loss in a DXA report is sure complicated. One suggestion I have is that you don't have to do anything immediately. Doctors may sometimes make it seem that way but you can certainly take some time to research, think about and get comfortable with whatever action you choose to take. A month or two or three to carefully consider your choice is not going to cost you much bone and it may be well worth it in your long term success.
Your effort to figure out why you are now losing bone and you were not before is definitely something to put effort into. If you are into weight training I strongly suggest looking into Belinda Beck and the studies she's done which had success in improving bone density and hip strength.
On another point, you seemed to have looked at osteoporosis meds and come away with the idea that anabolics are risky and anti-resorptives are not. I don't see it as that simple. For myself I try to balance out what the trials and studies showed as side effects and what people on forums are reporting. All the meds have serious problems you just have to sort out the possible benefits and possible negative consequences as best you can. For myself in my situation with bone loss that I could not stop with natural means, I choose Evenity as the first
med. It is newer and that is a negative but the positives seemed to outweigh the negatives and give it the highest score in my mind.
OTH, Forteo has been in use for many many years and has a pretty good track record. I don't see it as being more dangerous than anti-resorptives at all.
Also DXA s being inaccurate is a loose and almost useless way of looking at things. If people have a worrisome DXA score they sometimes talk about DXAs being inaccurate as a way of reducing their anxiety. Yes there are accuracy issues but DXAs are the best tool/device we have commonly available at present to determine our likelihood to fracture. Some other devices have much higher radiation exposure. DXAs are very low radiation. REMS/Echolight may turn out to be great but it is not yet well proven enough in my opinion. So is it possible your latest DXA is inaccurate, yes. You can get another one done or you can pay someone like Lani Simpson to review your DXA scans to confirm their accuracy. I did that. Unfortunately she said the bone loss my DXA's showed was accurate. At least I knew rapid bone loss was indeed happening and could make decisions based on that.
My suggestion is to do what you are doing which is learning about bone loss and evaluating the possible courses of action and don't let the world pressure you into quick decisions.
I’ve already done 8 months of research and was comfortable with my decision to start a teriparatide on April 11th, until I read about potential hip loss on a post yesterday. My endocrinologist only mentioned a potential loss in the forearm.
It was my endocrinologist (who helped write the Canadian Osteoporosis guidelines) that just recently commented that they are finding DEXAs aren’t as accurate and they will be recommending less of them? Unfortunately I didn’t think fast enough to ask why I’m basing drug therapy on my DEXA scans then, as I was shocked that she didn’t want a baseline DEXA (since my last one 8 months ago), or any baseline bloodwork, or any monitoring. Just come see in my two years when you finish therapy. This is what caused my anxiety along with the post on someone losing hip density on Tymlos, which is similar.
@lynn59 "8 months research", so I was unknowingly preaching to the choir on doing research!
As to your doc and her DXA comments I have no idea what she meant about accuracy and frequency. As accurate as what? I could make guesses but not much point in that. I have seen nothing emerging in the literature or talked about in forums to indicate DXA s are no longer thought to be valuable. I do acknowledge that DXA scans are not as accurate as we want them to be. That is unfortunate and frustrating but not using them because they are imperfect is illogical, at least until you have a better replacement to offer.
Many times large scale public policy recommendations are based on measures that do not reflect their worth to an individual. In other words factors like the money the insurance companies or governments would have to spend short term may be a huge factor in the recommendations. Personally I'm getting scans every year (and once even sooner) until I get my bone loss under control. I can make use of that information even though it may be imperfect. And finally a large percentage of all the research on drugs, exercise and other factors influencing bone loss (or gain) is done using DXA scans. And those DXA scans in research are often done at shorter intervals than 2 years. Certainly down to 6-8 months. Those scans done at those more frequent intervals are how we know a lot about how well drugs perform or whether or not this style or that style of exercise is more beneficial to our bones.
Personally I would have anxiety from her recommendations because they don't match what I consider best practice or what's most logical. Following a course of treatment with daily injections for 2 years with no attempt to determine if it's helping, that to me is sheer lunacy.
I acknowledge that some doctors who are considered osteoporosis experts practice that way. Just doesn't make sense to me.
Best of luck with your decisions
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