OSTEOPOROSIS: I am unable to take any... - Bone Health and O...

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OSTEOPOROSIS

yaelsmith profile image
10 Replies

I am unable to take any of the medications prescribed for osteoporosis due to serious side effects and have just taken a holiday from the Prolia shot. I exercise regularly with both weight bearing and strength exercise and take calcium, Vitamin D-3, Vitamin K-2 and eat a low fat, healthy diet and avoid foods that are bad for osteoporosis (like coke, alcohol, etc.). I am considering adding a collagen and Zinc supplement which was suggested on line to help with bones. I am anxious about no treatment, particularly since I sustained a compression fracture at the T-12 almost 6 years ago due to trauma. I did not start the prolia until about 17 months after that fracture with no further fractures. However, after 2 shots I took a holiday and in the 4th month sustained a fracture at the T-9 without any trauma although I was in a pain management program in which the instructor had me do an exercise with my arms outstretched and then twisting. I think the twisting may have contributed to that second fracture which occurred on the last day of the class. I have concerns that by stopping the prolia, i might be at risk for more fractures due to the rebound factor by prolia. What are the alternatives for women like myself who cannot take the available prescription medications? Yael

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yaelsmith
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Birdmama profile image
Birdmama

I can't tell you how to treat the condition other than what you are already doing. I can tell you that twisting is an absolute no! I have added Alpha Lipoic Acid to my daily routine with the blessings of all my doctors. Some studies indicate that this is an aid to improving bone density.

yaelsmith profile image
yaelsmith in reply to Birdmama

Thank you for your reply. I do believe that the twisting exercise the instructor had me doing in the pain management class was responsible for my second FX and would never do that again. I will look into Alpha Lipoic Aid.

Birdmama profile image
Birdmama in reply to yaelsmith

nof.org/patients/fracturesf.... This is a very helpful site

sweetsusie profile image
sweetsusie

My doctor prescribed hormone replacement therapy (HRT) for me, because it will help build back bones. I'm 70 and it's rare that a doctor would prescribe at my age, but I think now some of them are getting a "clue," and realizing that HRT isn't as dangerous as it was once thought to be.

yaelsmith profile image
yaelsmith in reply to sweetsusie

Thank you for your reply. I know of women who were on hormone replacement therapy and developed ovarian cancer. I tried it many years ago and had to stop due side effects. Good luck to you.

TommyJohn profile image
TommyJohn

Its a well known fact that stopping Prolia increases your risk of further fractures. I have 5 years completed and now am left with 3 options

1/ continue taking 6 monthly injections for a further 5 years

2/ an annual infusion of ...?.?

3/ A further 2 years (secondsession) of Protelos -

I am due for DX scan in Jan, then a team consultation with my consultants, and after that, god only knows.

I have had 4 known compression fractures, but none since I began treatment 7 years ago. I am willing to risk side effects (of which I have none so far) rather than go through 6 long hazardous months with one more fractured vertebra. I am a fairly healthy 70 yr old male.

My only medications are vitD supplemented Calvidin, and an occasional anti-inflammatory when the back ache gets too tedious - PS I did use Cannabidiol drops for 2 months but didnt see the advantage of paying 39 € for little or no relief except My skin appeared fresher :)

All in all, I have nothing of any useful advice for you - my criteria is and has been ——- how do you measure the agony of fractures against the discomfort of whatever treatment regime you chose. The choice is totally yours, coupled with the logic of pain barriers youre gifted (or not gifted) with

Sincere good wishes

Tommy

I wish to add that my scores were and still are from -4 to -5 an have lost 2 stone in weight plus over 4 inches in height - some of the weight I’ve regained (about 10 lb) but If I shrink anymore i’ll dissappear :)

i

yaelsmith profile image
yaelsmith in reply to TommyJohn

Thank you for replying to me. My primary side effect is such severe nausea that I have been to the hospital 4 times since starting on Prolia 4 years ago and in between ER visits I have had over a dozen episodes in between, most in the past year, where although disabled, have been able to avoid the ER. On a scale of 1-10, my episodes are about a 20-30 and those are the times I have to go to the ER where they give me Zofran and Saline in an IV. My ER visit a year ago resulted in a 2 day hospitalization to get me stabilized. All tests they do are always normal and so I was told it was acid reflux. I had an endoscopy 9/28/18 and there was no evidence of acid reflux and all was normal. My first fracture was almost 6 years ago due to trauma. I had no medication for osteoporosis until about 17 months after that fracture with no further fractures. The second fracture was 2 years ago and I believe was due to the twisting exercise the instructor had me doing and at that time I was off the Prolia for about 4 months. I will be meeting with an endocrinologist next week and will see what she has to say. Again, I appreciated your taking the time to write to me.

Kaarina profile image
Kaarina in reply to TommyJohn

Hi TommyJohn,

I have lost more height than you. 5 inches and a bit. :) I am interested that you say one of your options is to take Protelos again. Where do you reside that Protelos is still available? I was very cross and still am, when Protelos was withdrawn last August in the UK.

yaelsmith profile image
yaelsmith in reply to Kaarina

WHAT ARE PROTELOS?

Kaarina profile image
Kaarina in reply to yaelsmith

Here is a link that will explain about Protelos:

nos.org.uk/news/2017/may/31...

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