P1NP decrease with 9 month drug holiday
I just had my lab results come in and from Sept of 24 at my last appt, my P1NP dropped from 74 to 19. My CTX results haven’t come back yet. I was on Tymlos for 2 years and ended that protocol in July of 24. I decided to go on bioidentical hormones to hopefully hold my gains and have been taking Estradiol, testosterone and progesterone as well as D3, K2, Calcium and magnesium. However, it’s obvious that not taking any osteo meds is depleting my bones again. My rheumatologist has wanted me on Evenity since August but I wanted to try the hormones with my cardiologist and integrative doctors both agreeing that hormones could help. I wish I could go back on Tymlos because I had minimal side effects with great gains. Because we travel pretty extensively, monthly Evenity injections will be difficult but the other options (Prolia, Fosamax) are out. I don’t think I can take Forteo after Tymlos so my options are limited.
Any feedback is welcome. Thanks, Rose 🌹
Has anyone taken a drug holiday and had their numbers change so drastically?
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Rose, if you go back on Tymlos, P1NP will leap again. Some doctors are prescribing third and fourth years. I'm on Forteo for the third year. Bone markers have been great. I'm guessing that your CTX will have dropped as well. Any chance your endocrinologist would prescribe a year of Forteo?
Hi
What is the difference between tymlos and forte. I have been on reclast for 3 years and my spine just fractured again. My spine had improved so I don't get it. I had radiation last year due to breast cancer.So I don't know if that affects my bones
@sue417 There is not much difference at all. Forteo has to be refrigerated, Tymlos does not. They are both self-injected daily. And both build bone.
And yes, I understand that treatments for cancer can cause bone loss. I’m so sorry you are enduring these issues with ur body. It’s so difficult when we are taking medication to improve our issues and then suffer injuries due to other medical conditions or medications we are taking.
Take care of yourself, this journey is not an easy one.
God Bless you, Rose
@gently Hi there…that’s great news. I had heard they took the black box warning of a limited 2-year protocol off Tymlos but I hadn’t looked into that. I wouldn’t mind going on Forteo, because even with our extensive traveling, I could keep it cool while away from refrigeration. I’d prefer to go back on Tymlos since I did so well. I’ll have to connect with my rheumatologist and discuss going back on Tymlos or Forteo and see what her response is. She was a bit adamant about going on Evenity but my cousin is an endocrinologist up in Monterey and I can discuss it with him as well.
Thanks so much for ur response. It gives me hope. Have a great weekend. Rose 🌹
Hi Rose
Thank you so much for your kind words.💗
💕🌹
sue417,
so sorry you fractured. Radiation works on our cancers because it disrupts DNA, but it does the same with the bone in the line of the radiation vector. Trabecular bone the bone in our spine is most vulnerable.
The antiresorptives, like Reclast, make it difficult for damaged bone to self repair. The three years of Reclast may have played a part in the fracture.
Tymlos and Forteo have a different way of increasing bone density. They increase our bodies ability to remove damaged, fissured bone and increase the cells that replace the bone with new bone.
Both Tymlos and Forteo are analogues--that is similar in structure to part of pth ( forteo is recombined dna, tymlos is snythetic) They are considered homogenous in the first (1-34) amino acids that comprise the parathyroid hormone.
So they both work by increasing parathyroid in the blood by injection, but only for a brief period of time. They basically trick your body into thinking you are losing bone, so that your body immediately produces the cells that break bone down and the cells that build fresh bone.
Tymlos attaches to a part of the protein receptor that Forteo doesn't prefer . Because of that attachment Tymlos isn't active as long as Forteo, which works even better. Tymlos produces fewer of the cells that break bone down. You are less likely to have hypercalcemia with Tymlos than Forteo. And it is thought that, especially in the hips, the bmd results are slightly better . The Tymlos dose is higher 80mcg vs Forteo 20mcg. And Tymlos contains a preservative that some are allergic to.
Many doctors have no preference for one over the other and just prescribe whichever insurance will pay for.
I'm often enough unclear. I'm happy to try again.
Hi
Wow that is a lot of information.Thank you. I just don't understand why I fractured when i've been on the reclast for 3 years, but as you said the radiation may have affected it. I feel like it's a living battle. I don't understand why they would not have done a bone density on me after my treatment for cancer was done.
sue417, Reclast works by stopping the cells that break down bone, so the drug by its mechanism of action would have prevented the removal of bone damaged by radiation. Stopping the the cells that remove bone subsequently stops the cells that add fresh bone. The increase in bone density is older sometimes fissured or radiation damaged bone collected over time. This bone is avascular and without a good nerve supply. It is more brittle bone.
It could be that Reclast gave you some protection since radiation is more damaging in dividing cells. But it could be that Reclast prevented any repair that might have prevented the fracture.
Zoledronate, Reclast's active ingredient, is often given after cancer treatment to prevent metastasis to the bone,
by reducing the same growth factors that encourage the development of new bone.
It is impossible to know if Reclast was a net positive or negative with regard to the fracture. We don't always get the best care. Even with bone density after treatment, they may not have changed your medication. But could have advised to you be very careful.
How long after radiation did you fracture.
Living battle for sure.
Not sure why you think you're losing bone because your P1NP has dropped because no longer on Tymlos when you state you don't know your CTX yet? Tymlos is obviously temporary and HRT is not going to work at the same rate but maybe it will still work for you?