@dmshope and @anewyorker I second @dmshope's advice about carefully reading Dr McCormick's "Great Bones". What a well-researched book! The biochemistry required for us to build and maintain bone is highly delicate and complex but he does a good job of explaining it in a digestible fashion. He also discusses the rebound effects that can occur coming off these bone treatments that can wipe out all the gains if not followed by subsequent treatments. You say you did not want to take Reclast. I'm sure you have your reasons but you must be well aware of the perils of not doing something else within two weeks (says my Endo) of these drugs clearing your system. They do their work and then you have to do something to hang onto those gains!
I am 12 months into my 18-month treatment with Tymlos and have just had an astonishing DEXA..spine is up 64% (-3.3 to -1.2) and hips and femorel necks are up from 14%-24%...pulling me out of "osteoporosis" and just into "osteopenia". We are going to continue with the Tymlos to the 18th-month mark and I am going to watch my CTX and P1NP bone markers like a hawk during that time for any radical changes. But as I said, the plan is to do an infusion of Reclast within 2 weeks of coming off the Tymlos to avoid a rebound. And then probably will have to do a few more years of Reclast and take it from there.
I have been very lucky to have responded so well to the Tymlos as I understand not everyone does. That said, it has not been easy and I want to encourage people going into this 'manage' the experience with your doctor if you can. At the 6-month mark the bone pain and muscle weakness became almost debilitating but my bone markers were so good I was trying to hang on. I came across this Mayo site and in another thread people were discussing side effects and how to manage them. Some people were just bailing and others were trying other things like drug holidays and titrating up to full does etc... Their experiences were very helpful to me. I had the sense that maybe the dose was just too much...I am small and all my life have been over-dosed on meds because of it.. if you think about it we dose children based on weight and even our pets! The only reason this is not done for humans is that it's too expensive to run separate studies for all those doses to get FDA approval so they take the average size and go with that...usually a man too but that's a whole other subject!! Anyway I played with the dosing and found that at 60 mcg's the pain and weakness was MUCH less and totally bearable. Went up to 70 mcg's and it came back with a vengence. So I stayed at the 60 mcg dose for a full week and had labs done - CTX and P1NP - both were still fab so my Endo agreed I could continue at that dose. At 12 months they are still great but I am starting to see a little drop off which is expected. I wanted to mention this dosing thing because I saw so many people stop altogether and that is such a shame!!
My Endo has said he has seen great results with Tymlos but that my results are the best he's seen and asked me what else I was doing. The only two things I think may have really made a difference is that 1) my new GYN put me on transdermal estrogen (plus oral progesterine) about 6 months before I started the Tymlos. The effects of that were life-changing!! What a difference! And since then I have seen so many menopausal GYN's discussing the importance of estrogen for aging women (see Instagram dr. amybkillen, asknoor, drrachelrubin, drmaryclaire). I am seeing the consensus in the last year shift to offering estradiol to women at any age, even 10 yrs past menopause as I was. The patches do away with the cardio risk (stroke risk) by by-passing the liver. Some of them suggest maintaining levels of blood estradiol at around 30 pg/uL for maintaining bone and more like 50 pg/uL for building bone. As there have not been large studies funded for this these docs are working off anecdotal evidence they are gathering in their practices and from small studies. My level is sitting at a steady 63 pg/uL so I think I am in a 'safe' zone. I plan to stay on it for life!
The second thing I have been doing religiously is supplementing with collagen...specifically types one through IV (UCII, Fortibone, Verisol, Fortigel UC-II). I happen to use the AlgaeCal brand but there are plenty to choose from. It must be having some effect because I can see it in my hair, nails and skin if nothing else! I am guessing it's helping my bones too and there are some studies now to back that up (see PubMed clinical trial by Daniel Konig et al, in Nutrients 2018).
So sorry! This has been long-winded but after my experience I feel compelled to share and will continue to do so as my treatment continues. I have gained much by reading these posts and hope this helps somebody in their journey. The issue is SO complex, especially factoring in co-morbidities and conditions that people are dealing with! Every case will be a bit different for sure so educate yourself and read everything!!