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@teb

@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.

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Replies to "@lynn59 Hi Lynn, My drop in spine density was very similar to yours. It happened very..."

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.

May I ask what dose you are on for HRT and what form? Thank you.