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Forteo (teriparatide) followed by HRT: My Experience
Osteoporosis & Bone Health | Last Active: Oct 21 10:58pm | Replies (364)Comment receiving replies
@mayblin
Thought I'd touch base again. After a few months I reread your experience above. I didn't realize before how very similar it is to mine! Looking at your beginning T scores to the post forteo/6 mo T scores we are very similar in both lumbar and hip. If I'm reading correctly: You improved from -3.4 to -2.3 in the lumbar spine. I just had my follow up dexa and meeting with endo and rheumatologist last week. I started at a -3.6 and improved to a -2.5. This is after 2 years on Tymlos and starting BHRT 6 months ago on my own. I'm taking it while finishing my last months of Tymlos. I use a .025 estradiol patch (bi weekly) and 100mg of micronized progesterone daily. You continued to improve to -1.9 after 15 months with BHRT alone and no other osteo meds??!! This is very encouraging for me!
I actually am down to my last 10 days of Tymlos and both the endo and my rheumatologist have given me the choice of Reclast (both favor this) or Alendronate. Both have changed their tune since last year when I approached them about BHRT therapy. Last year was a resounding NO! from both. I started BHRT on my own 6 months ago and this year they were both supportive. I fully expected to be told I was taking a risky path. What a difference a year makes......and updated FDA recommendations. LOL. My endo actually said the BHRT probably helped my gains as I gained more this year than my first year on Tymlos. Usually the gains aren't as much in year 2.
I have been doing a lot of reading on bisphosphonates in the last 2 years. I simply cannot wrap my head around poisoning my osteoclasts and disabling them from doing their job....only to have them all wake up and be angry and make up for lost time after I'm off of the bispho for the "drug holiday". Then to wait for the t score to drop again and start all over, and with more brittle bones from the bispho leftover effects. Reclast can stay in your bones for up to 10 years after even 1 infusion. I'm supposed to do 3 years if that is my choice. No thanks.
I intend to stay on BHRT for as long as I can speak. Learning how estrogen acts as an antiresorptive just makes so much more sense, using something that is natural without killing off an important cell that needs to remove old bone. The problem is just keeping osteoblasts up with the building part. I've never had bone markers done as none of my docs use them, or know how to use them, so I have no baseline or any idea of how they are/have responded to Tymlos and BHRT.
I haven't told either dr yet that I'm not going to do the bisphosphonate thing. I am dreading that email. They were both quite thrilled with my improvement (as was I and also I was very relieved) and I'm sure they will think I'm making a huge mistake and wasting my gains. But I have a few other ideas that I'm researching, so this journey will continue. Forever I suppose.
We're all just doing what we can!
Be well & Cheers!
Nonna
Replies to "@mayblin Thought I'd touch base again. After a few months I reread your experience above. I..."
@psmnonna Hi Nonna, I've just started menostar which is an ultra low dose estradiol patch for older women to hopefully prevent future OP progression. Could you tell me the dose of estradiol you've been on for this purpose?
@psmnonna
First of all, congratulations on your amazing improvement! I'm truly happy for you.
It's really interesting that our starting Tscore were so similar and that we've both ended up in a similar range. From what you shared, you reached a lumbar Tscore of -2.5 after two years in Tymlos, with the last 6mo combined with HRT. In comparison, mt lumbar Tscore improved to -2.9 after 22mo on Forteo alone, and then to -2.3 after 6mo of HRT alone. My bmd gains with Forteo were modest at first, but there was a noticeable jump during the 6mo of HRT alone. This was explained to me by an endo who is familiar with btms and HRT that my high bone turnover state while on Forteo (even at the end of treatment) may have helped extend the anabolic window. I also wonder if adding HRT toward the end of your Tymlos helped continue the bone-building effect. I do wish you had bone markers tracked along the way - it would've been fascinating to see how they changed over time and what insight they might offer.
Since my table may look a bit busy, here's a short version of my sequence: 22mo of Forteo alone -> 6mo of HRT alone -> 5mo HRT plus a small overlap with Forteo (3 pens, various dosing regimen) -> HRT alone afterwards. So my last DXA wasn't purely HRT data because it still reflected that brief overlap with Forteo. The next scan will be the first one showing HRT alone, which should give a much clearer picture of whether bmd is being maintained. So far, my bone markers have been reassuring - my CTX has remained quite suppressed at low 100s on HRT alone.
Like you, I don't have a bone marker baseline. You might consider asking your doctor to order labs, or even self-order online, just to see where your CTX is at now, and especially on HRT alone in the near future. This could reassure you that your bone turnover is adequately suppressed during the antiresorptive phase on HRT alone, which will support the case that you don't necessarily need to switch to or add a bisphosphonate.
It is said that estrogen is a stronger antiresorptive than raloxifene, so it should be effective, though individual response and dosing can vary. We share the same thought that estrogen can be a more natural antiresorptive option, provided the benefits outweigh the risks. Since its effects are readily reversible, it won't "lock" bone turnover into a long term suppressed state the way some other agents might. That flexibility, especially if repeated anabolic treatment is ever needed in the future, feels like a meaningful advantage.
If you decide to check btm, you could test CTX (with or without P1NP) at 1 and 3mo after being on HRT alone. If one test is preferred, around 2mo in might be reasonable since you've already been on HRT for 6mo.
I'm really encouraged by your great news. Let's keep comparing notes as we go.
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@psmnonna
What a great story and reply!
Would you consider going on Inspire to the Osteoporosis and maybe the Red Hot Mama community and sharing this there also. Your voice would be so appreciated.
A google search of Inspire osteoporosis community should find the site easily. I would give you a link but it just links to my profile etc.