T1 and Osteoporosis drugs

I have rejected osteoporosis injections for years and now have to face the facts of thinning bone and a couple fractures in ;last few years. T1 50 years and dreaded taking more meds. I am going with the Prolia 6 month injection for 2 years for now. I am very prone to side effects with most, if not all meds. Has anyone had good results with this or the daily injection of Forteo? My concern is side effects. They sound awful. Endo says most folks get no side effects.
Love to hear any thoughts.
thanks

1 Like

I started Prolia about 18 months ago, after a fall that broke my hip. Follow-up bone density resulted in recommendation for prolia. I was not aware of alternative, based on discussion with ortho. (T1 55+ years).

Why do you think Forteo would be better compared to Prolia ?

1 Like

Endo said forteo is only drug that actually builds the bone. Prolia will keep bones from getting worse. He said Prolia would be indicated after a year of forteo. I am going with prolia. How were intial side effects for you?
Thanks

EmojiBhakti Cypressi

I had no noticeable side effects, although was dealing with death in family and beginning of covid pandemic.

I have been diabetic for over 50 years, and my rhumatologist (whom I see for dermatomyositis) ordered the once-a-year Reclast IV for me. I have had two doses of the Reclast now with no side effects; however, I know that people are supposed to have no more than five Reclast infusions. I don’t know what will happen after that. Since my first and second infusions were a few years apart, I am hoping to do the Reclast only every other year. I need to do more research to learn how much protraction I will get if I do not have the infusions every year. I had not heard of Forteo, but I will check into that. Thanks for the info.

Thanks.
My endo did not mention Reclast. I am going with Prolia, every 6 months. I think this is a dtufg for life and cannot be stopped. I am frightened to start bur may not have choice.
Will keep poated.
best in health!

EmojiBhakti Cypressi

Don’t do prolia, lots of possible terrible side effects including spontaneous femur fracture, spinal fractures after treatment, organ damage, severe itchy skin rashes that don’t resolve( my neighbor’s friend had this), severe back and muscle pain, low calcium, uti, severe gastric problems, jaw necrosis and more. Once injected it is there for 6 months or more, no way to go back.

My gyn office tried to push it in me a few years back so did others later. I went to look at side effects on a forum with actual patients who were suffering for years with terrible effects. Many were having these issues long after 6 months. One man said his sister had several organs fail after the first injection.

While forteo has risks too I believe that is a better choice especially if you have already had fractures.

Prolia does not really build bone and any density gained is weak because it is not built up the way your body normally would, it also is lost after you stop treatment.

1 Like

This is scary, at best. I will not take it. But I have broken a few bones. None are unprovoked. Falls trips and crushing . Can I still maintain what I have by increasing weight bearing? I walk and do yoga and swim but do not do much weight bearing.
Any thoughts welcomed!
Tahks!

1 Like

I would consider forteo. My hematologist told me that would be safe for me if I get worse. It is already severe according to the scans but has not gotten worse and knock on wood no fractures ever. Weight baring is good always not too much weight if you are fracturing and exercise aerobic etc. but I don’t think it will improve bd but it may maintain? I am trying that just by my activities etc. It is hard for me to walk everyday due to various issues lately such as the usual bg although I manage it better now, foot issues etc. and current life things going on.

I am on the fence but do appreciate your thoughts.

1 Like