STOP! Don't do this if you have osteoporosis

I am a 70 y.o, active female and was diagnosed with severe osteoporosis a few years ago. I am slightly underweight for my height; I walk 30 mins at least 3x/wk and exercise regularly (flexibility and weight bearing). Very few "pains & aches" and have never had a fracture. I get a Dexa scan every 2 years.

I think years of steroids for asthma exacerbations were the culprit. But Fasenra (a biologic) has completely controlled my asthma since 2018, and I haven't needed steroids since then.

I was on Fosomax for several years, then my gynecologist recommended stopping. She suggested I see an endocrinologist, who prescribed Prolia (1x/6mos). I did that for one-an-a-half years, then was advised that Prolia actually doesn't strengthen the whole bone and can result in fractures that are difficult, if not impossible, to repair.

My endo was not happy I just quit the Prolia regimen without consulting her (couldn't get an appointment for 4 months!). I consider myself knowledgeable and proactive regarding my health, but this clash of viewpoints has got me frustrated and concerned...who's right and what should I do now?

I am a 70 y.o, active female and was diagnosed with severe osteoporosis a few years ago. I am slightly underweight for my height; I walk 30 mins at least 3x/wk and exercise regularly (flexibility and weight bearing). Very few "pains & aches" and have never had a fracture. I get a Dexa scan every 2 years.

I think years of steroids for asthma exacerbations were the culprit. But Fasenra (a biologic) has completely controlled my asthma since 2018, and I haven't needed steroids since then.

I was on Fosomax for several years, then my gynecologist recommended stopping. She suggested I see an endocrinologist, who prescribed Prolia (1x/6mos). I did that for one-an-a-half years, then was advised that Prolia actually doesn't strengthen the whole bone and can result in fractures that are difficult, if not impossible, to repair.

My endo was not happy I just quit the Prolia regimen without consulting her (couldn't get an appointment for 4 months!). I consider myself knowledgeable and proactive regarding my health, but this clash of viewpoints has got me frustrated and concerned...who's right and what should I do now?

lilyanne here, i have osteoporosis and need some teeth pulled. thing is, i have the aggressive papillary cancer and given a 6-10 month survival rate. so i was cleared by the cancer dr. to have the teeth removed. i'll give you all 3 guesses as to what i am going to do. since isabelle 7 has asked how many have regretted surgeries they had done, i can name a few: endovenous ablation, breast surgery, as no were no lump, just that fluid sac. melanoma surgery, moh, on the left leg that had the endovenous ablation, they claim it was melanoma but it did not have all the markings, but, i don't have no diploma on the wall. so onto thyroid cancer, right off the bat, that biopsy.....those 4 needles jabbed into my neck............next day and to this day i still feel like someone is choking me. so, onto the thyroid surgeries (2) right side, radical dissection, ok, 11 out of 19 lymph nodes cancer (2 1/2) surgery. left side 1 cm. bit of cancer. if i did not have this surgery they said i would not be alive very long. ok, so now i am so stiff in the am, like i have the stiff person syndrome gets a little better as i move around but not by much. my left knee is giving me problems and i am in the hopes it will hold off as i really do not want to any more to my body. my husband has these episodes where he is having pain in his neck and the pain goes into his arms and chest. his dr. told him he would avoid surgery on the spine if at all possible. so try and live with what you have until it is really, really nessary. thanks for the tip on the bending over, something i do without thinking especially to pet the cat and pick thing from the garden. so my best wishes to everyone.

@proudgrandma as you may know and is frequently discussed on this forum and by my doctors, Prolia has a very risky rebound and we are supposed to follow it with a bisphosphonate to avoid rapid bone loss and increase in fracture risk (see also McCormick's book "Great Bones" and Dr. Ben Leder's video on YouTube on Combinations and Sequencing). If you have done fewer than 3 Prolia shots, you might be able to do Fosamax. If you have done more than that on Prolia, McCormick and others advise Reclast.

It's interesting that you have only been on anti-resorptives which increase density by affecting turnover vs "bone builders" like Forteo, Tymlos and Eventiy. I have been told we cannot do Forteo or Tymlos right after Prolia but I don't know if Evenity is possible. It is complicated. I hope you can discuss with your doctor.

But stopping Prolia cold turkey is reputed to be risky!

ps @isabelle7 I am assuming you meant Prolia, not Forteo, in your last lines!

God bless you to find some peace in all your medical issues. Big hugs. There are walking medical miracles among us. I hope you will be one!

@loriesco , @lilyann

I'm with @loriesco all the way about medical miracles!! I've known some personally and I too hope you will be one of them!! Life is short and we must remember to enjoy the small things that bring us pleasure - a bird landing on the windowsill, hopping around and looking in as though to say "hi." We have lots of birds here because we feed, water and house them and I am amazed at how much joy they bring. Recently two sets of babies were born in houses in a tree just outside our dining room. We've been able to watch them grow, watch them grow anxious to get out into the world and finally taking their first flight. Then hopping from limb to limb of our tree, practicing short flights until they finally get the nerve to fly across the yard. It's a sight to see, if you're a bird lover. That's just one small example of the many, many things in life we have to be thankful for and that we have to enjoy. I hope you have nature around you because for me, it's nature that brings so much joy, happiness and peace to my otherwise pretty tumultuous life. In the past year my husband went from a healthy and strong man who I've been married to for 43 years. Just over a year ago he developed something called PMR, then in Feb he developed Giant Cell Arteritis which was devastating and scary. But we were plugging along, trying to get him through that without losing his sight or having a stroke. He had to take high doses of prednisone for both illnesses which is how he developed steroid-induced osteoporosis. The osteoporosis has proven to be the most difficult of all to deal with. He starts on Forteo on Monday. In the meantime, just when we thought we were making some headway (his labs are coming back really good lately and his most recent x-ray showed no new fractures - he has 3 - and that his fractures are stabilizing.) Which was all great news! Then on Friday he went in for a bladder ultrasound before his first urology appointment on the 31st of this month (they found narrowing in an unrelated CT scan), an appointment I didn't go to because we thought it was so simple. When he got home he walked in limping and looking like the end of the world had struck. Evidently, after urinating there was still too much urine in his bladder so to avoid possible damage to his kidneys, they told him he could not leave without a catheter. So now we are dealing with this new issue and neither of us knew the first thing about catheters. However, after two full days dealing with this thing, watching more YouTube videos than I'd care to admit, I finally now feel I'm a pro at this. But, it was quite rude of them to send him home like that without even teaching him the first thing about catheter use. Anyway, we will get through this as it's a temporary fix. I'm praying!

I'm not sure how I got off on that topic but when I started out wishing you the best and wishing for a miracle! I'm going to tag @windyshores to bring her up to date on my husband.

@loriesco , @lilyann

I'm with @loriesco all the way about medical miracles!! I've known some personally and I too hope you will be one of them!! Life is short and we must remember to enjoy the small things that bring us pleasure - a bird landing on the windowsill, hopping around and looking in as though to say "hi." We have lots of birds here because we feed, water and house them and I am amazed at how much joy they bring. Recently two sets of babies were born in houses in a tree just outside our dining room. We've been able to watch them grow, watch them grow anxious to get out into the world and finally taking their first flight. Then hopping from limb to limb of our tree, practicing short flights until they finally get the nerve to fly across the yard. It's a sight to see, if you're a bird lover. That's just one small example of the many, many things in life we have to be thankful for and that we have to enjoy. I hope you have nature around you because for me, it's nature that brings so much joy, happiness and peace to my otherwise pretty tumultuous life. In the past year my husband went from a healthy and strong man who I've been married to for 43 years. Just over a year ago he developed something called PMR, then in Feb he developed Giant Cell Arteritis which was devastating and scary. But we were plugging along, trying to get him through that without losing his sight or having a stroke. He had to take high doses of prednisone for both illnesses which is how he developed steroid-induced osteoporosis. The osteoporosis has proven to be the most difficult of all to deal with. He starts on Forteo on Monday. In the meantime, just when we thought we were making some headway (his labs are coming back really good lately and his most recent x-ray showed no new fractures - he has 3 - and that his fractures are stabilizing.) Which was all great news! Then on Friday he went in for a bladder ultrasound before his first urology appointment on the 31st of this month (they found narrowing in an unrelated CT scan), an appointment I didn't go to because we thought it was so simple. When he got home he walked in limping and looking like the end of the world had struck. Evidently, after urinating there was still too much urine in his bladder so to avoid possible damage to his kidneys, they told him he could not leave without a catheter. So now we are dealing with this new issue and neither of us knew the first thing about catheters. However, after two full days dealing with this thing, watching more YouTube videos than I'd care to admit, I finally now feel I'm a pro at this. But, it was quite rude of them to send him home like that without even teaching him the first thing about catheter use. Anyway, we will get through this as it's a temporary fix. I'm praying!

I'm not sure how I got off on that topic but when I started out wishing you the best and wishing for a miracle! I'm going to tag @windyshores to bring her up to date on my husband.

@isabelle7 ,

Thank you for your personal account of what you and your husband are going through. I am praying for more joys like the birds, peace, healing, and guidance. Your generosity in encouraging others and sharing of your life is inspirational. I wish you joy and all the best.