I have had much the same experience as you. I refused to use Prolia after the 3d .shot.
I am now on Risedronate. I have no idea if it is doing anything.
I cannot get to see a specialist in the near future.
I am seriously thinking that we should collectively file a class action lawsuit.
Interested?
Yes, I agree about the class action suit. These drug companies need to be held accountable to what they do to people. I was never warned about these side effects.
May I ask how long you have been off the Prolia and on the Risedronate (Actonel)? Has your hair started to grow back?
Will the doctor who prescribed the Risedronate possibly order the bone marker blood work (CTX and P1NP) to monitor the osteoclasts and osteoblasts? I hoping this new endocrinologist I just transferred to will order them so I can hopefully monitor any problems before it is too late.
Hello @danaso1989 and welcome to Mayo Connect. I appreciate you sharing your experience with Prolia. It must be gratifying to see a 9% increase in the bone density of your spine.
I'm wondering if you have had any other side effects other than the hair loss. Is Prolia the only medication you have used for osteoporosis?
Yes, that is the only side effect I have had I think. I started getting pain in my wrists joints and I had a hard time getting rid of back to back bad colds in February which weren't Covid and they both wet into sinus infections which I have never had ever. I am not sure if that is due to Prolia or not. I took Fosamax for 8 years with no side effects and it did keep me from losing bone for a while but the Prolia is growing bone so I am happy with that but not the hair loss. My endocrinologist wants me to take one more Prolia shot in September then get my Dexa scan in December then she will switch me to something else, not sure what. My daughter who is a nurse also and said "mom would you rather wear a wig or break a hip" I said neither. 🤣 I am going to start vitamins for my hair and maybe switch to some algae calcium. I walk 5 times a week and do resistance exercises a couple times a week. I am also checking out OsteoStrong, a bone center, which is like a gym for your bones. They coach you on resistance exercises and have vibration plates that you stand on which were just FDA approved to increase bone density. Has anyone else gone to OsteoStrong? I am going there next week to visit and see how it works. I will let you know what happens. This is a great site to share information. Thank you all!
P.S. My grandma had a hunchback that was so bad she could hardly stand up. I am so grateful that now we have things that we can do for prevention.
I recently started using a shampoo that's supposed to help, Pura d'Or Advanced Therapy Biotin. It has great reviews, and the majority of the ingredients are organic. It's not water based either, it's made with aloe vera instead. Love these things about it. Hope it works. Has anyone here tried it before and had any positive results? It's too early for me to be sure if it's doing anything--only a couple of weeks.
Hi @lizzie12
I hope you have as goodof results as I've had with Pura d'Or. I've been using it since last October (still on my first bottle), and I'm very happy with it. Now that my hair has had a good chance to grow back, it's getting thicker.
Best,
hopefullibrarian
Hi @lizzie12
I hope you have as goodof results as I've had with Pura d'Or. I've been using it since last October (still on my first bottle), and I'm very happy with it. Now that my hair has had a good chance to grow back, it's getting thicker.
Best,
hopefullibrarian
I only had one injection of Prolia in May 2023, and started using the shampoo in October. From the hair loss I got a little balding patch near in my hairline, after about 3 months, I could feel and see it starting to fill in.
I was on Prolia for 3.5 years. I started noticing hair loss after a couple of shots but I wrote it off to just getting older. Since I had very thick hair I didn't really worry until my shower drain stopped up and the plumber commented that he "pulled a pony tail" out of the drain. Our house was only 3 years old and I had never lost enough hair to stop up a shower drain anywhere I had lived. By the time I stopped Prolia my hair was noticeably thin. I made an appointment to discuss hair loss with the prescribing physician (at a major national hospital) and was told hair loss was not a side effect of Prolia. At that appointment I decided to stop Prolia and was educated on the process. It was also suggested I see a dermatologist for the hair loss. I've been through multiple rounds of scalp steroid injections, a dozen different medications and I am still losing hair. Current thoughts are that after several years on Prolia it triggered an autoimmune response which has resulted in a scarring alopecia. Perhaps an unfortunate combination of Prolia and my genetics? My hair will not grow back. Be careful.
I was on Prolia for 3.5 years. I started noticing hair loss after a couple of shots but I wrote it off to just getting older. Since I had very thick hair I didn't really worry until my shower drain stopped up and the plumber commented that he "pulled a pony tail" out of the drain. Our house was only 3 years old and I had never lost enough hair to stop up a shower drain anywhere I had lived. By the time I stopped Prolia my hair was noticeably thin. I made an appointment to discuss hair loss with the prescribing physician (at a major national hospital) and was told hair loss was not a side effect of Prolia. At that appointment I decided to stop Prolia and was educated on the process. It was also suggested I see a dermatologist for the hair loss. I've been through multiple rounds of scalp steroid injections, a dozen different medications and I am still losing hair. Current thoughts are that after several years on Prolia it triggered an autoimmune response which has resulted in a scarring alopecia. Perhaps an unfortunate combination of Prolia and my genetics? My hair will not grow back. Be careful.
I have posted in past threads about Prolia and hair loss. I called Amgen to inquire and was told that hair loss was not reported during clinical trials, but was after product went to market. Hair loss does not happen to everyone, but how does one know if that outcome will be a side effect?
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Yes, I agree about the class action suit. These drug companies need to be held accountable to what they do to people. I was never warned about these side effects.
May I ask how long you have been off the Prolia and on the Risedronate (Actonel)? Has your hair started to grow back?
Will the doctor who prescribed the Risedronate possibly order the bone marker blood work (CTX and P1NP) to monitor the osteoclasts and osteoblasts? I hoping this new endocrinologist I just transferred to will order them so I can hopefully monitor any problems before it is too late.
Thanks for getting back to me.
Yes, that is the only side effect I have had I think. I started getting pain in my wrists joints and I had a hard time getting rid of back to back bad colds in February which weren't Covid and they both wet into sinus infections which I have never had ever. I am not sure if that is due to Prolia or not. I took Fosamax for 8 years with no side effects and it did keep me from losing bone for a while but the Prolia is growing bone so I am happy with that but not the hair loss. My endocrinologist wants me to take one more Prolia shot in September then get my Dexa scan in December then she will switch me to something else, not sure what. My daughter who is a nurse also and said "mom would you rather wear a wig or break a hip" I said neither. 🤣 I am going to start vitamins for my hair and maybe switch to some algae calcium. I walk 5 times a week and do resistance exercises a couple times a week. I am also checking out OsteoStrong, a bone center, which is like a gym for your bones. They coach you on resistance exercises and have vibration plates that you stand on which were just FDA approved to increase bone density. Has anyone else gone to OsteoStrong? I am going there next week to visit and see how it works. I will let you know what happens. This is a great site to share information. Thank you all!
P.S. My grandma had a hunchback that was so bad she could hardly stand up. I am so grateful that now we have things that we can do for prevention.
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2 ReactionsI just bought Pura d'Or shampoo and conditioner. After using this shampoo once I noticed less hair in the shower.
How has been working for you?
Hi @lizzie12
I hope you have as goodof results as I've had with Pura d'Or. I've been using it since last October (still on my first bottle), and I'm very happy with it. Now that my hair has had a good chance to grow back, it's getting thicker.
Best,
hopefullibrarian
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2 ReactionsThank you for your response. I am so glad for you that your hair is thick and growing back. What a relief!
Are you still on Prolia?
How long before your hair started growing back?
I only had one injection of Prolia in May 2023, and started using the shampoo in October. From the hair loss I got a little balding patch near in my hairline, after about 3 months, I could feel and see it starting to fill in.
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Like -
Helpful -
Hug
1 ReactionI was on Prolia for 3.5 years. I started noticing hair loss after a couple of shots but I wrote it off to just getting older. Since I had very thick hair I didn't really worry until my shower drain stopped up and the plumber commented that he "pulled a pony tail" out of the drain. Our house was only 3 years old and I had never lost enough hair to stop up a shower drain anywhere I had lived. By the time I stopped Prolia my hair was noticeably thin. I made an appointment to discuss hair loss with the prescribing physician (at a major national hospital) and was told hair loss was not a side effect of Prolia. At that appointment I decided to stop Prolia and was educated on the process. It was also suggested I see a dermatologist for the hair loss. I've been through multiple rounds of scalp steroid injections, a dozen different medications and I am still losing hair. Current thoughts are that after several years on Prolia it triggered an autoimmune response which has resulted in a scarring alopecia. Perhaps an unfortunate combination of Prolia and my genetics? My hair will not grow back. Be careful.
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Like -
Helpful -
Hug
1 ReactionYes, I am having hair loss with Prolix too. I am now aware that it is possibly irreversible by the last comment.
I have posted in past threads about Prolia and hair loss. I called Amgen to inquire and was told that hair loss was not reported during clinical trials, but was after product went to market. Hair loss does not happen to everyone, but how does one know if that outcome will be a side effect?
Best wishes,
Cindy