Disappointing update on Tymlos

@kathleen1314
You are on the right track about underlying disorders. I am convinced my osteoporosis is the result of my chronic pancreatitis with considerable malabsorption. That was diagnosed nearly three years ago and it was so advanced that it was clear the CP had been a factor for quite some time. I take enzymes for that condition. The osteoporosis was just diagnosed this past summer and it too is quite advanced. So I personally am going the whole 9 yards with supplements, exercise, and Tymlos and my bone formation blood markers have already showed significant improvement. I’m counting on Tymlos to do its job and I’m doing everything else to support the medication. I don’t think it’s just one thing that would suffice for most of us. Many of us found out belatedly what we should have been doing over the years to prevent our bone loss. Never too late.

@oopsiedaisy I have read the study at the link and wonder if those impressive risk reductions hold for people with results like mine.

@anewyorker There are a number of studies on that page. One study looked at Tymlos vs. placebo in post-menopausal women for reducing fractures. Vertebral fracture incidence for women on Tymlos was 0.06% (4 fractures) and for placebo it was 4.2% (29 fractures). So the absolute risk reduction is only 3.6% (4.2% - 0.06%). The drug companies (and supplement companies) love to tout “relative risk reduction” because the numbers are more impressive but ARR is really what one needs to look at with research studies.

This blog explains this in more detail if you are interested: https://blogs.imperial.ac.uk/medical-centre/2023/09/15/decoding-risk-in-clinical-public-health-practice-absolute-vs-relative-risk-reduction/

I have taken Tymlos, Forteo and now Evenity and I expected each of them to make only very small difference in my fracture risk. I was willing to give them a try because I was alarmed that I had a vertebral fracture. So far, so good. No new fractures.

My BMD in my spine has never been that low. An increase would be nice but clearly in my case, BMD improvement hasn’t really impacted my outcome to date.

Part of my skepticism with remaining on meds long term is that the absolute risk reduction isn’t that big.

At any rate, if you have not fractured and continue not to fracture, that is good thing!

@anewyorker There are a number of studies on that page. One study looked at Tymlos vs. placebo in post-menopausal women for reducing fractures. Vertebral fracture incidence for women on Tymlos was 0.06% (4 fractures) and for placebo it was 4.2% (29 fractures). So the absolute risk reduction is only 3.6% (4.2% - 0.06%). The drug companies (and supplement companies) love to tout “relative risk reduction” because the numbers are more impressive but ARR is really what one needs to look at with research studies.

This blog explains this in more detail if you are interested: https://blogs.imperial.ac.uk/medical-centre/2023/09/15/decoding-risk-in-clinical-public-health-practice-absolute-vs-relative-risk-reduction/

I have taken Tymlos, Forteo and now Evenity and I expected each of them to make only very small difference in my fracture risk. I was willing to give them a try because I was alarmed that I had a vertebral fracture. So far, so good. No new fractures.

My BMD in my spine has never been that low. An increase would be nice but clearly in my case, BMD improvement hasn’t really impacted my outcome to date.

Part of my skepticism with remaining on meds long term is that the absolute risk reduction isn’t that big.

At any rate, if you have not fractured and continue not to fracture, that is good thing!

@willowmena
Yes, I agree, osteoporosis can be very complex and even age, hormone driven osteoporosis can also have elements especially of malabsorption and long time cortisone use, inflammation etc. woven into the cause of the disease.

I am gluten intolerant. I do not absorb my nutrients (calcium etc anything) when my system is inflamed from gluten exposure, because of this I frequently use supplements to try and help my body as it tries to absorb the nutrients which my body needs.

I do a fairly good job of limiting gluten, but then life happens.
Ex: bought something labeled dandelion coffee; had a cup it was great and reminded me of the coffee which I love but can no longer drink.
BUT....the coffee acted weird with no grounds left so ....I asked my husband to read micro font of ingredients to me....viola, the main ingredients were rye and barley flours/etc. gluten, gluten, gluten.
Sigh....I just drank a full cup of gluten. So my white cell count will plummet, bone health will suffer, and I will be in a position of an inflamed gut that won't want to absorb any of my nutrients for a period of time until my body can heal again.
GAG... all because the gluten wasn't on the buying information and the ingredient list was too small for my old eyes to read without asking someone for help.

@oopsiedaisy unfortunately, I did fracture my L1 vertebra in October 2023, but the cause is a bit ambiguous. Obviously osteoporosis didn’t help, but I fell after I tripped over my canister vacuum, tried to recover, ricocheted around the room, slammed into a closet door, and wound up falling hard on my lumbar spine. I don’t consider it out of the question that I would have fractured even if my spine were stronger. That is the only fracture I’ve had so far (crossing fingers)! And it has healed and is stable.

It was after this happened that my endo said it was time for an anabolic agent to try to strengthen my bones. Unfortunately, I turned out not to be a great advertisement for tymlos.

Im sorry to hear of your second year decline on tymlos. You do not mention what your bone markers were at these times which may help you find your answer. Tymlos tends to be more aggressive in activating osteoclasts (bone breakdown cells) in the second year ( this is sometimes evaluated on the bone marker - CTX ) Also on both Forteo and tymlos, coritcal bone can suffer ( increase prosoity) sometimes greatly. Hip has alot of coritcal bone and wrist and feet are primarily cortical bone. SPine is primarily trabecular bone.
There are different reasons for all of this and I advise you to read Great BOnes by Dr MecCormick so you can begin to try to sort through this.. educate yourself
I too had a significant decline in cortical bone in the second year of tymlos. I then transitioned to Evenity, althoug I had to fight for it ( Evenity better for cortical bone) and am doing well. However I had done alot of work to get my diet and system as healhty as possible prior ( did all the tests for thyroid, inflammation, homoscysteine, gut issues, growth hormone Igf-1 homrone, urine cal, vit D and boen markers etc. ) You may have to ask for some of these tests - if they were not done. The book will give you guidelines. Sending postive energy for your healing.

@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!!

@michieg first of all, congratulations on your truly phenomenal results. What a relief for you!

We’re all so different, and that’s part of why treating diseases like osteoporosis is so complicated. I would not take any form of estrogen because my mother died quite young of breast cancer that she developed in her mid-thirties (I know there’s new thinking on this) and because while taking raloxifene to support my bones after my hysterectomy I developed a massive blood clot behind my knee that led to three additional clots in my calf, along with major pain and lots of anxiety. The combination of these two factors, for better or for worse, makes me very nervous about hormonal treatments.

You are right about the need to transition after Tymlos, although my endocrinologist, who specializes in bone and metabolic disorders, said that I’d be ok for up to three months without a new med (it will not be anywhere near that long). She does not recommend Reclast, and, perhaps because I’m old enough that time limits for Prolia seem fanciful, thinks that’s the best route.

Best of luck to you. Your results were truly stratospherically good.