Why me? (sorry for the childish question)

Hello,
How were you diagnosed with osteoporosis? Did you have a bone break?

@gently
Hi, side question here. I thought that you could not take Forteo for longer than 2 years - has that advice recently changed? Thanks!

lylii, the black box warning was lifted from Forteo in 2020. The warning was issued because of a cancer risk seen in the rodents used in studies. No cancer was found in the monkeys used and no cancers were found with the years of use in humans.
Endocrinologists are cautiously investigating which patients would benefit from additional years of Forteo.
Shortly after the limit was lifted for Forteo it was also lifted for Tymlos. The language on the Tymlos package insert "advises" limiting use to two years. Some practitioners are also extending the use of Tymlos beyond two years.
Both medications can become less effective after about 18 months. Monitoring the effectiveness with bone markers is a good way to protect the patient from possible waning effect.
Oh, how I go on. I only needed the first sentence.

Why me? Because I am still alive and, at 68 and well beyond child-bearing years, I am dealing with the fact that there was no evolutionary reason for the human body to develop ways to maintain health into our 70s and 80s. We coax our bodies to stay strong with all sorts of medications and exercise, and fend off outside threats with vaccines and antibiotics. In many ways, I have osteoporosis because I'm lucky--my environment plus my genetics haven't bestowed on me some terrible disease or fatal accident that killed me before this, and I live in a time in which there are medical treatments for me and others that reduce my daily risk.

Anyway, I'm trying to develop the above attitude, not always successfully 🙂 Best wishes for all of us for good medical providers, better strength of will than I've had to keep exercising and seeking effective treatment for all our ailments, and the inspiration and fortitude to keep finding fun and fulfillment no matter what miseries and joys our bodies give us!

Looking forward to the day when meds for osteoporosis are less problematic….people with certain other conditions are quite limited in their choices…and once you are on the meds, you have to take something to avoid losing any gains from meds…i have heard that one can take a drug ‘’holiday’’ in some cases, just for a year after many on treatments. Wishing all of you here the best of luck with whatever you and your docs do….meanwhile exercise and dietary adjustments, a well-chosen supplement —could help .

I have osteoporosis and I was deficient in vitamin D. I don't know if that's what caused it but I'm sure it didn't help. Do yourself a favor and get blood work done and also some books on bone density etc. Try to supplement your diet either by eating the right foods or supplementing if you're deficient. I am not a doctor but I am staying away from all prescription meds as if my life depended on it. Please, please, please do a deep dive on all things that can be caused by them! Just sayin!

@maryandnans Congratulations!

@gently
I had no prob with all the drugs including Forteo and 10 years of Prolia. Had a reaction to Prolia on the 21st shot and 6 mos later given Jubbonti. I have many if the severe side affects and have gone to my doctor, 24 of them and they all scratch their heads and tell me that they don't know what to do. I am in terrible pain in my locked ankles and legs which go in and out of even for no reason and are cherry red. What am I to do? Taken all tests and nothing shows up. I was very active before now I am almost a vegetable. I haven't even been driving. What do you suggest. My next new dr my 3rd rheumatologist can’t see me until Dec. I am on a cancellation list.

When was your last denosumab (Jubboni). At six months you really have to take Reclast. It is the only medication proven to prevent denosumab rebound.
You may have hypocalcemia. Hypocalcemia happens with this drug because you've locked in your storage house of calcium--your bones. Hypocalcemia might be causing all of your symptoms. Calcium and vitamin d levels should be drawn. You'd want to supplement low dosing throughout the day or if your doctors want to help IV calcium.
You might try acetaminophen, but really it is just wait.
Your sudden response is noted in the literature after long use.
Call each one of the 24 until one orders these labs or find the 25th. Getting the labs should be easy. Post back.

I've had very severe osteoporosis since my first DEXA scan at age 50 (now 70). No underlying cause has been found. I, too, was surprised--being a near life-long runner and backpacker. I urge you to educate yourself well on the condition, and especially on various approaches to treatment, including progressive weight lifting and jumping, making sure your diet is dialed in, and the most current research. If your scores warrant drug treatment, Forteo or Tymlos is a great place to start. I had no effects from Forteo. The Bone Health and Osteoporosis Foundation, formerly the National Osteoporosis Foundation, can be a good resource when getting started; I think they have been updating the information they present. Then, the OsteoBoston channel on YouTube has presentations from dozens and dozens of current experts in the field (in medical research, exercise, nutrition, functional medicine...). It is a trove of information. Perhaps start with some that have the most views. Welcome to the club and good luck!