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

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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 ?

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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.

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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!

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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 bearing 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.

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I was just diagnosed with osteoporosis with a score of -3.5. I had no idea that there was a diabetes link. I thought I had osteopenia because I was older and thin. My GP said that if it was him, he wouldn’t take the meds.

I received a hair line fracture in a foot about 5 yrs ago when walking on a very uneven dirt/gravel road. Other than that I haven’t broken any bone as an adult. I broke an arm when I was 9.

I ride my exercise bike everyday, but now I am adding walking. I also started working with arm weights.

The only other suggestion my GP had was to not fall.

Is it naive to say that I won’t medicate unless I break something?

I slipped and fell when gardening a few weeks ago, but did not hurt myself.

I would wait. What would the drug do that would be helpful? Are the side effects worse than the cure? Keep up the weight work. Maybe get a second opinion.

Marilyn, seems T1 links to all diseases! That said, I have had 3 prolia shots and no side effects. I honor your rejecting the meds but after breaking calcareous in 202 0 had no choice! Was in pain and unaaable to walk for 14 weeks. At 64, I am not fearful of long term side effects anymore. Grateful to be alive!
Stay well!

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Calcareous? What is that? Did you fall or did your breaks happen without falling? Do you happen to remember what your score was?
I certainly don’t want to break a bone! I wish my GP would have been more informative. Who prescribed meds for you? I am glad that the med works for you!

I tripped on the uneven concrete. The calcareous is the Heel bone. It was a bad one to break. I had previously broken 2 ribs and a finger. None unprovoked, but the pain and the down time is difficult. My endo prescribed Prolia and promised the he has no patients with side effects. My PCP confirmed her not seeing side effects. I am happy to report none as well. I do not want to break another bone! My numbers were -3.2 on one thing and -3.5 on another.

Do the bones become stronger with the medication? I assume that they would?
Yes, breaking a bone in your heel would be very painful.

I knew I had osteopenia, but I hadn’t had a recent bone density test. I have had to do so much research in the past several years for very serious conditions that my family has had that I had no interest in researching osteoporosis. And since it was so easy to ignore, I didn’t feel a need to become more educated about the condition. I also changed doctors during that time and he never suggested a bone density test.

I decided if I trust a doctor I’m taking the decision off my plate and deferring to them
My endois kept me alive this long he is a genius and I trust him
I fought him on that bone density med for six years and three breaks later I finally decided to go with it
I think it’s one you have to take for life since I do not have side effects I am not concerned and I don’t really understand exactly how it works but the success numbers look good
They do not however look good on the Internet so I have given up reading anticdotal reports on the Internet

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I’m also on Prolia (1 shot every 6 months for the rest of life). I didn’t tolerate the oral osteoporosis drug they first tried me on (risedronate).

I was diagnosed 10 years ago after a bone scan revealed numerous fractures of vertebrae in my neck. Breaking my hip a couple of years ago sealed the deal for medication :pill:

@Marilyn6 I wasn’t thrilled when I was urged to start taking an osteo med either, but my fracture specialist explained that with the bone density numbers I have, my ribs and vertibrae in my lower back would soon be breaking just rolling over in bed :grimacing:

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Thanks for adding this. I love hearing of others T1 doing well with Prolia!
This is now a welcome drug for me. We are too old and compromised to tolerate breaks!
stay well !

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No they don’t. Prolia and those other drugs build bone density but they are not building your bone the way it normally does it itself. It actually can make your bones more fragile and people have had unprovoked fractures from being on these drugs in the thigh bone as well as a lot of other horrific complications. In addition you can only use them for a certain number of years and after a few years the bone density benefits go away.

They are used for people who have chemotherapy because it cause causes rapid loss of bone density

just be aware if you’re going to try them Prolia is an injection that supposedly only stays in your system for six months however I know people who ended up with terrible side effects that lasted way longer than six months including permanent damage. My neighbor’s friend had severe itchy rashes all over her body and bone pain for a few years after only one injection. The problem with the injection is there’s no way to stop it or get it out of your system- if you take the pills and you have bad side effects you can just stop them and hopefully the effects will go away.

In addition if you stop taking prolia specifically it causes rapid bone loss so you may have to take another similar pill drug to stop vertibral fractures which can happen when you stop it. If this doesn’t suggest how messed up this is I don’t know what does. So after taking it you could actually end up worse off.

In my opinion the only reason to take it would be if you are on chemotherapy or if you had severe fractures already and forteo or something else is not an alternative option.

They’re making so much money off of all of these drugs so they can’t seem to figure out some other way to treat all of this which doesn’t cause all of these problems.

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