Disappointing update on Tymlos

@cfic I was diagnosed with celiac at 47 so I understand your concerns. I had significant gains on Tymlos is my spine, hips and femoral so please have hope. Tymlos was my first osteoporosis drug and I still have a few months to go. I’m thankful I was able to use it.

@bluebonnet242
Thank you so much!

I’m sorry this happened, and appreciate your letting us know. What will you do next?

@daisylou Thanks, daisylou. Basically I don't have any really good options. I took Prolia in the early 2020s for a couple of years and had improved DEXA scores everywhere but in the spine (which has always been my biggest concern). For some reason (I don't remember why), I switched to alendronate in March 2023 but had to stop it because my GERD became unacceptably bad. Then in October 2023 came a compression fracture at L1 after a terrible fall.

I began Tymlos in January 2024 and in the first year had small gains in my spine and held steady everywhere else. And now it's time to stop the Tymlos.

My options were basically Prolia or Reclast. My endocrinologist said that in many ways they're biosimilar, but she believes that Prolia is more effective at retaining the gains, such as they were, from Tymlos. So it's back to Prolia. I had no side effects whatever when I took it; the problem is stopping it should that become necessary. But I"m quite old, and she basically says that I'll stay on it for the duration, barring some kind of special circumstance.

As I"ve said before, most of the options for women with osteoporosis all have serious drawbacks. The anabolics are probably the best, but they're hugely expensive (even with insurance they cost me thousands each year), and even they don't always work as advertised (I'm living proof of that). What a mess!

Good luck to you!

Thank you very much for your follow up! I am new to this thread and I am considering going on Tymlos. I am 64. I have a lumbar spine scores of -4.8 (unbelievable as I have always been active) density of .59 and femoral score of -2.6 with density of .683. I was diagnosed just before covid at age 59 - and due to covid, etc. focused on diet and lighter exercise to prevent fracture over the past five years. There was no change in my DEXA over those years - good thing! I had a further delay in addressing my bones because I had a breast cancer scare and had to consider those treatments - in the end, I chose a prophylactic double mastectomy due to genetics. Now that I am recovered from that saga I am focusing on my bone health. I have longevity in my family with many living 90+ (both parents still here!) and even to one hundred. ...and yes several widows humps amongst the women in my family. Despite longevity, and probable op, they all were active until the end. That said, my grandmother had a femoral neck break when she was 95 (changing fitted flannel sheet on a bed and toppled over - I don't use fitted anymore!) and again at 101 - which could not be treated and she effectively bleed out; but under hospice care. That journey took app. 3 days. She was happy, and active (big walker, seamstress, knitter) until the day she went under hospice care- and even then, the first several days she was happy and joking with the family. She had only one prescription at 101 for blood pressure - and she fell at 101 because she acclimating to that drug, So having seen my elders struggle, move through pain, and forge ahead with living their best life, I wonder if the pain of op prescription drug treatment is worth the gain? My mother is 90 and currently on Fosamax; she has terrible muscle aches and pains - such that the pain limits her activities. I currently have no meds, other than Vitamin D supplement for bone health. So I question whether op treatments, and possible side effects, are worth the gain. What I know is I want to preserve my quality of life... and certainly quality is subjective for each of us. I understand having good bones will enhance my quality of life. I had to abandon some of my favorite outdoor activities (skiing, mountain climbing, running) because they are high risk activities. I presume even if I get back to -3, or even -2.5, I will never be able to do these activities again. Plus, I understand that given the severity of my op I will/would be on op meds the rest of my life. I am a bit worried about long term health implications. But also finances a bit; I will transit from a good health insurance plan from work to medicaid and who knows what that will look like by the time I retire? Plus I am single and live alone - and I do worry about feeling awful, or have a sudden bp drop, with no one in the home. I don't have to make a decision about treatment now but I should do so soon. My specialist suggests Tymlos for 2 years to build - and after 2 years another for maintenance. I look forward to hearing how anewyorker moves forward - and from anyone with any insight or advice. Decisions, decisions...it's never ending!

I showed no gains on Tymlos during the first year (I have written about my experience on earlier entry).
I am in the second year now and will have a new DEXA in september which will be interesting. I will report on that when I get results. I was on HRT from age 59-63. My gynecologist stopped the HRT after 5 years just to keep cancer risks low? Anyway, I started Tymlos when I stopped HRT last year. There has been No bone loss-all is stable (If I had done nothing I would've continued to lose bone) But I was disappointed that I saw no DEXA gains from Tymlos. My Prescribing doctors (I got two opinions from bone"experts" both said maybe in the second year I'll see a gain in spine or hip. I will be faced with what drug to take next this fall.
I hate all the side effects of all the drugs and dread it. Question- since I am only 65- if I do Prolia do I have two take it rest of my life??!!

I guess I am the man in the group. I am 67 and have had fifteen back surgeries in the last 14 years and after two fusions am fused L3-S1. I have now developed severe stenosis at L2/3 and am told I need a fusion. However, not long before that diagnosis I found out I have osteoporosis and had one round of Prolia. My neurosurgeon said I need to build up my bone density before I can have the fusion. So, they wanted to switch me to an anabolic and said Forteo. Just before I was to start Forteo, I read that Tymlos works better on vertebrae so I asked my PCP to put me on it. I have now been on it for about six weeks. I take it at bedtime and have had no issues with it. I recently went out of town, got out of my routine and missed six straight doses of it. I hope that is not a big deal. I was told six months to a year on Tymlos to build up the bone enough for the fusion. The good thing is that, even if I could have the fusion now, I would not do it; I am just not in enough pain to go through another fusion, so waiting is not an issue, at the moment. It is disheartening to read the comments that Tymlos did not help after a year and was wondering whether anyone knows whether men react to it differently. Also, any other tips are welcome.

@2024tymloshelp Thé short answer is no, you aren’t stuck on Prolia for life. HOWEVER, you must quickly transition to another med to avoid the dreaded rebound.

I had never heard of anyone having no gains or only minor ones after Tymlos until this week, when it happened to me. Perhaps the drug has been a tad oversold ? Or am I just being cranky?

@jcoleary Sorry to read about your long and painful history. The only man I know personally who has been diagnosed with osteoporosis is my husband, but his story is very different from yours. Thank goodness he has had neither pain nor fractures; he’s just one of those very skinny guys who doesn’t really exercise (he used to run about three miles pretty regularly, but that’s in the past).

I nagged him relentlessly because I knew he was vulnerable, and he finally had a DEXA scan and did turn out to have osteoporosis in some sites. He’s been on Prolia for a couple of years and has had very good results, thank heaven.

Good luck to you. People don’t associate men with osteoporosis, but clearly they should. Even if it’s less common, it’s still a major risk.

I am retired. Had to get Radius to cover my cost of tymlos. It pays fully.