Has anyone improved bone density without meds?
I have a very problematic dental history and will continue to need additional root canals and implants. I also have Sjogren's Syndrome and want to avoid any drugs that cause rheumatic symptoms. Other issues in my health history make all of the meds risky for me. That said, I work out almost daily, lift weights, maintain a healthy diet, take all the recommended supplements, and get most of my calcium nutritionally. My endocrinologist wants me to take an infusion/injectable drug. I dread the side-effects, yet I'm afraid of fracturing, which hasn't happened over the many years I have had osteoporosis. That said, my numbers are getting worse (-3.2 spine, -3.1 hip). I need to do something more than I've been doing, and am at a loss. I need hope and solutions I can be at peace with. Thanks for any comments or suggestions!
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@sgp55 By early osteoporosis I meant scores that are not too bad, so the bone loss has not progressed to severe.
I have kept a chart of my DEXA's since 2001 and I can only tell you that in my experience, scores jump around a bit. I have been told changes are significant if more than .5 up or down.
Your scores aren't terrible though!
Hi Teb, I’m new to this site and loved your comments and approach. I was diagnosed with osteoporosis after menopause at the age of 48. My lumbar spine was the worst. Thankfully with exercise and a good diet I maintained steady numbers, until recently. I’m 64 years old and my lumbar spine dropped from -2.8 to -3.1 in the past 2 years likely due to stress and bad habits as a primary caregiver for an elder. My doctor wants me to go on Prolia, but I’m very reticent given my age, as I hear you can only be on it for 6-10 years and bone mass reduces more than normal when you go off of it. I’d love to learn more about alternatives and why you chose Forteo, then estrogen.
@lynn59 Hi Lynn, My drop in spine density was very similar to yours. It happened very quickly so I knew I needed to do something more than my natural approach. I chose Forteo because the gain is primarily specific to the spine which is where I had all of my loss. In addition, my comfort level with Forteo was that it is a synthetic copy of parathyroid hormone so something that is familiar to the body vs. a bisphosphonate. I was on it for 2 years with no apparent side effects and a reasonable gain in my spine. As is common, I had my largest gains the first year. The second year for me proved no benefit, in fact a very slight loss. If you do go on Forteo, make sure your doctor regularly orders blood tests that show your bone turnover markers to make sure the drug is benefiting you, particularly that second year when gains are considerably lower. Unfortunately, my doctor did not order these tests and I was not as informed as I am now as I really should have suspended use after a year and a half.
Once I completed the two years on Forteo, I knew I had to go on something else to maintain the gains or it is lost pretty quickly. After Forteo, my doctor wanted to put me on an oral bisphosphonate, their “go to” drug as a first option. At the time, I had reflux so this wasn’t a good option. Next choice was Reclast but my concern was the intensity of that drug and that if I had a negative reaction, the drug would sustain in my body for a very long time. I wasn’t comfortable with that. Next option he preferred was Prolia but I argued that since this was an immuno-suppressive, it was not a good option for me as someone with autoimmune conditions. My doctor actually thought that was a good point that he had never considered and surprisingly, he agreed with me. I then pursued going on HRT. At first he was reluctant but then agreed that it was probably a very good option for me for me to maintain my density as it used to be prescribed extensively for osteoporosis. This was several years ago before the flurry of information on positive benefits of HRT that we are now seeing all over the news and social media, disputing the flawed conclusions and negative press generated from the Women's Health Initiative. I have now been on HRT for about 5 years and I am very happy and comfortable with that decision. Attitudes are really shifting in recognition of the overall benefits of HRT vs the risks (which are actually quite low) but finding an informed and open doctor within the allopathic medical community and your insurance plan is still very difficult. Since you are several years past what they consider the safe window of use, your doctor may be reluctant. It is important to find a physician who is well informed on the risks and benefits of HRT so that you can have a substantive, open-minded conversation.
If you want more information on HRT, there are a couple of progressive, informed physicians who are very present on social media. Dr Mary Claire Haver in particular is active on Instagram and posts daily, siting recent and current studies that support the use of HRT. Dr Felice Gersh is a knowledgeable integrative ob-gyn who has been prescribing HRT for decades. Dr Avrum Bluming is a hemotologist and medical oncologist who has co-written a well-researched and very informative book called Estrogen Matters. All of these physicians are excellent resources for cutting through the risk-heavy narrative on HRT to get to the actual facts so that you can make a well-informed decision on whether it is an option for you. To find someone local to you, you might want to check the North American Menopause Society for their database of trained practitioners on HRT.
Thank you so very much for your insightful response. You have obviously educated yourself thoroughly on this topic. I did ask my endocrinologist if I could go back on HRT and he said they don’t give it to anyone past 60, so I understand your point about openness. I was on HRT right after my initial diagnosis for three years and they suggested I go off it because my mammogram showed calcification in one of my breasts. I then tried oral bisohosphanates but they didn’t agree with my GI tract.
I haven’t heard of Forteo until your post and I’m wondering why it wasn’t offered to me as an option, since my spine density is much lower than my femoral neck and hip. I’ll have to investigate Prolia’s effectiveness on the spine more before deciding which one is better for me. I don’t have any autoimmune diseases that I know of, so I’m guessing I don’t have the same issue as you did with Prolia. Good for you, btw, of figuring that out!! Personally, I’m most comfortable with trying HRT again to postpone any injections, even though I did experience calcification in one of my breast after 3 years on it! Maybe not smart on my part, but that’s my instinct.
Are you comfortable sharing your lumbar spine T-score before and after the Forteo with me? And also after the HRT? If not, maybe a few more comments would help:). This is a huge decision for me, and unfortunately my doctors don’t seem to want to take the time to hash it out with me.
That is encouraging, thanks for sharing!
Unfortunately, most doctors pull from their limited toolkit and prescribe bisphosphonates first as that is what insurance pays for. Since you've already been on an oral bisphosphonate and your loss is predominantly in your spine, you can push for Forteo (or similar) if that is your preference. Forteo is never offered as a first option though it should be for many of us. Some insurance companies won't pay for it and it can be expensive. The pharmaceutical manufacturer has a reduced cost program that you might be able to get. I don't remember exactly what I paid but it was inexpensive. Tymlos is another drug that works similarly to Forteo. It is newer than Forteo and has a higher dose (though adjustable, I hear from posts on this forum). I believe you can achieve slightly higher gains with Tymlos but my preference is the lower dose Forteo along with the comfort that it's been in use for decades. Good to explore all of the options before making the decision on what works best for you.
If you decide to go on Prolia, just know that you must be on a rigid schedule every 6 months. If you are late a month or go off it with no substitute medication, you are at very high risk of fracture almost immediately. Best to go on an anabolic (bone builder) drug first like Forteo, Tymlos or Evenity (anabolic and antiresorptive) and then go on Prolia or Reclast (if that is your preference) to maintain the gains. Or HRT . "They" do prescribe HRT over 60 and even with former calcifications (i'm loaded with them), you just have to get the right "they"! 🙂 It has to be someone trained as a menopause specialist and well versed in the use of HRT like the physicians I mentioned above. Otherwise, they often just go by the WHI risk data which is misleading at best.
I would highly recommend getting Dr Keith McCormick's book, Great Bones. It's research driven with great information that you can use as a reference. It doesn't, however, address HRT very thoroughly as an option. McCormick seems to be more open to that option as of late and I'll bet his next revision will include much more on HRT.
Happy to share my dexa numbers (and anything else that might be helpful). My spine went from -3.2 to -2.9 on Forteo and has maintained on HRT for 5 years since.
Again, super informative. Funny you mention Dr. Robert McCormick. I just spent the last hour watching OsteoBoston on YouTube interview him (August 2022). It was a lot to absorb. After listening, I wondered why I wasn’t offered Forteo which he mentioned as being good at building new bone tissue and better in the spine. However he did mention it could degrade the cortical? bone in the forearm, and needed to be followed up with bisphosphanates (in your case HRT).
I believe the IV injection of bisphosphanates is called Reclast. Since it has no rebound effect and lasts for years in your system, I’m wondering why I wasn’t offered that drug to buy me time? And why did you choose not to go that route? Is it because it doesn’t build quality bone?
I am feeling quite overwhelmed with all this important new information, and to be honest, I’m feeling so disappointed in the lack of discussion with my doctors. My GP simply said you will have to go on Prolia sooner or later …. for life … why wait a year especially given how active you are. I downhill ski on double black diamonds, cross country ski, backcountry ski, hike, bike and do many activities where falling can happen. My endocrinologist suggested the Prolia in the first place and said IV bisphosphanates is an alternative I suggested to your GP. I am now feeling I need another opinion or perhaps I should go back to my endocrinologist (who is semi retired and completely retiring next year).
The antidote to overwhelm is getting informed. Read the books mentioned, keep watching videos from reputable sources.
Here are a few videos you can start with:
If you are interested in HRT, this is an informative interview by the authors of Estrogen Matters (but still get the book as a reference)
https://peterattiamd.com/caroltavris-avrumbluming/
Margaret Martin, a PT well versed on osteoporosis. Here's a good interview with Dr Janet Rubin
Combined and Sequential Approaches with Osteoporosis
May I ask what dose you are on for HRT and what form? Thank you.
@vgkime I'm on a 1x/week transdermal estradiol patch at .025 mg and 100 mg oral micronized progesterone. I just saw a specialist and that dose will be changing. The "lowest dose for shortest period" philosophy is shifting. That dose of estrogen has kept my bones somewhat stable but it is not necessarily optimal. After my labs come in, we'll be increasing that dose but I'm not sure by how much. The oral progesterone dose is pretty standard but I'll be changing to cycling on and off of it which is a safer way to protect the uterus.