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Prolia discontinuation

Osteoporosis & Bone Health | Last Active: 18 hours ago | Replies (120)

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@badbones11

I also have had massive hair loss after 3 prolia shots (to the extent of now wearing a wig and baseball caps). After 9 months since my last Prolia shot in April, 2024, I am just starting to see a little bit of new hair growth along with the continued loss of old hair. Other new problems included extreme constipation and bloating and increased body and joint pain.

My endocrinologist did not agree with me that these are side effects are from Prolia but agreed to switch me to Actonel to avoid the rebound effect. ( I am fearful of Reclast being an annual infusion and the risk of its long term side effects after Prolia problems). I am having difficulty convincing her to track CTX and P1NP. She has given me a script for that bloodwork. I had it tested in Oct before actonel and will get it done in the next couple weeks again.

May I ask how your Malabsorption Syndrome was diagnosed??? I also am seeing a gastroenterologist who has done an upper GI, colonoscopy, etc and has now ordered a CT scan of abdomen. Tests (biopsies) for celiac have come back negative. I eat healthy but my blood work does not reflect it. Ex: My growth factor level-3 is consistently below normal which is not good for bone growth.

I am going to call Monday to a new dr that is I see on the bone health org. link someone posted below in the Pittsburgh area. If anyone else knows of a good bone doctor in the Pittsburgh area that would be helpful, I would be grateful if you would share.

Thanks to everyone who shares your issues on this website. It has been extremely helpful to me.

Wishing everyone all the best!

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Replies to "I also have had massive hair loss after 3 prolia shots (to the extent of now..."

If you find a knowledgeable doctor in the Pittsburgh area, please share that information.

I too, had a conversation about side effects from Prolia with a PA from an Endocrinologist’s office. She did not believe me either. In all of her many years, (she is 28) dispensing Prolia she had never heard of anyone with side effects. I just laughed. But decided to never go back to her.

I found some relief by doubling up on my calcium tablets for about a week before the injection and for about 10 days after the injection. Not everyone responds the same to the “pull” of calcium from the blood.