Fearing risks of Prolia

Posted by slr1 @slr1, Jan 6 8:55pm

I am going to my pcp tomorrow morning to discuss whether to start Prolia or Jubbonti after getting dexa scan results showing my osteoporosis has gotten worse. I took Ralaxifene for the last 2 years and it didn't help. I have researched these 2 drugs and have read a ton of bad side effects from patient reviews and I am really nervous to try! After taking Boniva just one time in the past, I felt like I was ran over by a truck for 3 days and I refused to ever take a biphosphate again. I am thinking about not starting a new drug and exercising more. Any input is much appreciated!

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Profile picture for mcchesney @kathleen1314

You say:
"Any input is much appreciated"
I am not sure exactly what your situation is, tscores, fracture history etc., but let me first say that it is very important to see a good endocrinologist to rule out any diseases or conditions which might be driving a diagnosis of osteoporosis.

That being said here is my story. I was diagnosed with osteoporosis of the hip; I tried Boniva; I had side effects with which I did not feel I could live and my dexa results never changed for the better.
Without telling my doctor I stopped the drug. I researched and found a mineral called strontium citrate. I started the strontium citrate and was also on BHRT plus all the usual suspects of good health and exercise needed for bone health.
At my next dexa, my endocrinologist almost skipped into the room. My dexa reading had gone up for the first time in my treatment. I told my doctor that I had stopped the drug and begun strontium citrate. He sat down and on his computer he began to pull up research, some of which I provided, and he also called some other specialists. He told me to continue with the strontium citrate. My results increased with every dexa, until eventually my endocrinologist released me from his care, telling me that I did not need him anymore. The last thing that he said to me was to make sure I took plenty of calcium and to change NOTHING.
Eventually, my dexa showed a normal bone density; the femoral takes a long time to change.
This year my dexa still showed normal bone density and the new TBS program which interprets bone quality showed normal bone quality. All this with no side effects and no fractures.

All of us have to decide what works best for us. But as a friend of mine says who was fracturing and stopped when she began strontium citrate...."We won the bone lottery".

Jump to this post

@kathleen1314 That is totally amazing! Well done to you for doing all your own research. Wish I was that motivated but me, with T-scores of averaging -3.5 I just did what the doc said and on Prolia which is fine apart from rash which may or may not be caused by it. (previous posts). Congratulations to you again. xo

REPLY
Profile picture for ausiemaggs73 @ausiemaggs73

@kathleen1314 That is totally amazing! Well done to you for doing all your own research. Wish I was that motivated but me, with T-scores of averaging -3.5 I just did what the doc said and on Prolia which is fine apart from rash which may or may not be caused by it. (previous posts). Congratulations to you again. xo

Jump to this post

@ausiemaggs73
Prolia can have great results. I hope that for you. We all have to celebrate one another!

" Prolia (denosumab) is a 6-month injection that significantly improves bone density and reduces fracture risk in postmenopausal women with osteoporosis. Over three years, it reduced new spine fractures by 68% and hip fractures by 40%, with bone mineral density (BMD) increasing by 9.2% in the spine and 6% in the hip."

REPLY
Profile picture for ausiemaggs73 @ausiemaggs73

@leslieb52 Hi Leslie and everyone Appointment with dermatologist yesterday re my rash. Have been diagnosed with something called Granuloma annulare which may or may not be caused by the Prolia injections however, the doc really thought it unlikely as she's never seen it being caused by that but not to say it can't happen. I've had blood tests done this morning so whether or not that shows up with something else will have to wait and see. So as far as the Prolia goes I will see what my gp says next week but I'm hoping not to have to stop it as it's been fine in every other way but I'll be happy just to know there's no underlying condition causing it. I have some special cream that may help which she's prescribed but apparently this condition can just go away by itself in either months or years. It's really not that noticable only if I wear swim costume which I don't really care. Main concern was if it was caused by the prolia and got worse and travelled to my face! (which it hasn't even gone onto the front of my body - only insides of legs and arms and hips. Rash on arms is barely visable. Anyway, I'm going to do another search on this site of this condition and see what it says. In the meantime fellow Prolia users - rest easy and know that MOST people on Prolia have very little problem. Love Maggie from Australia
PS I'll let you all know how if the blood test comes up with anything but hopefully nothing serious!

Jump to this post

@ausiemaggs73 Hey Mags, thanks for sharing. I was thinking about you. The only thing I can think about is that I am more tired than usual, but I don’t think that is Prolia. How many years or injections did it take for the rash to appear?
Hope the blood work gives you (us) some answers.
Stay well sisters.

REPLY
Profile picture for leslieb52 @leslieb52

@ausiemaggs73 Hey Mags, thanks for sharing. I was thinking about you. The only thing I can think about is that I am more tired than usual, but I don’t think that is Prolia. How many years or injections did it take for the rash to appear?
Hope the blood work gives you (us) some answers.
Stay well sisters.

Jump to this post

@leslieb52 on Prolia for 3 years and only appeared about 6 months ago. The doctors still not convinced it was from the prolia so lets hope not. Yes I do think Prolia can make you feel more tired and it is listed as a side effect. I've just started taking vitamin B6 and have actually been sleeping better as I was feeling very tired. I'm fine if I sleep ok but I think I haven't slept well since I've been taking pravastatin for high cholestoral. I also tend to do a lot of exercise and maybe over exercise at times. Just have to take a bit of extra care of ourselves when on any meds and I don't want to blame the Prolia for everything which is what we may try to do. I decided to try B6 as I'm not a huge eater and only weigh 47kg

REPLY
Profile picture for ausiemaggs73 @ausiemaggs73

@leslieb52 on Prolia for 3 years and only appeared about 6 months ago. The doctors still not convinced it was from the prolia so lets hope not. Yes I do think Prolia can make you feel more tired and it is listed as a side effect. I've just started taking vitamin B6 and have actually been sleeping better as I was feeling very tired. I'm fine if I sleep ok but I think I haven't slept well since I've been taking pravastatin for high cholestoral. I also tend to do a lot of exercise and maybe over exercise at times. Just have to take a bit of extra care of ourselves when on any meds and I don't want to blame the Prolia for everything which is what we may try to do. I decided to try B6 as I'm not a huge eater and only weigh 47kg

Jump to this post

@ausiemaggs73 I will ask my doctor about B6 vitamin.
You are tiny. I am small too, about 53 kg.
Xxoo

REPLY

Been on the Prolia over 3 years...not one side effect...improved dexa scan...
Yes, making up your mind is the hardest decision... I read too many comments...but what are you going to do??? Not read the info.?
Another nurse collegue of mine started prolia before me by a few years, also had zero problems and better scans. Do get an endocrinologist, though...hang in there!

REPLY
Profile picture for ausiemaggs73 @ausiemaggs73

@leslieb52 Hi Leslie and everyone Appointment with dermatologist yesterday re my rash. Have been diagnosed with something called Granuloma annulare which may or may not be caused by the Prolia injections however, the doc really thought it unlikely as she's never seen it being caused by that but not to say it can't happen. I've had blood tests done this morning so whether or not that shows up with something else will have to wait and see. So as far as the Prolia goes I will see what my gp says next week but I'm hoping not to have to stop it as it's been fine in every other way but I'll be happy just to know there's no underlying condition causing it. I have some special cream that may help which she's prescribed but apparently this condition can just go away by itself in either months or years. It's really not that noticable only if I wear swim costume which I don't really care. Main concern was if it was caused by the prolia and got worse and travelled to my face! (which it hasn't even gone onto the front of my body - only insides of legs and arms and hips. Rash on arms is barely visable. Anyway, I'm going to do another search on this site of this condition and see what it says. In the meantime fellow Prolia users - rest easy and know that MOST people on Prolia have very little problem. Love Maggie from Australia
PS I'll let you all know how if the blood test comes up with anything but hopefully nothing serious!

Jump to this post

@ausiemaggs73
While Granuloma annulare (GA) is not specifically listed as a common, direct side effect in Prolia manufacturer documentation, Prolia (denosumab) is known to cause various skin reactions, including eczema, dermatitis, and rashes. It is possible for medications that alter the immune system, like Prolia, to act as a trigger for skin conditions such as granuloma annulare.

Many medications that alter immune response may trigger Granuloma annulare.

REPLY
Profile picture for mcchesney @kathleen1314

@ausiemaggs73
While Granuloma annulare (GA) is not specifically listed as a common, direct side effect in Prolia manufacturer documentation, Prolia (denosumab) is known to cause various skin reactions, including eczema, dermatitis, and rashes. It is possible for medications that alter the immune system, like Prolia, to act as a trigger for skin conditions such as granuloma annulare.

Many medications that alter immune response may trigger Granuloma annulare.

Jump to this post

@kathleen1314 Yes my thoughts too. I'll wait to see what my doc as to say in regard to perhaps swapping to another bone drug to see if the skin condition goes away but I'm not keen to do that given I have no other problems with Prolia. If it doesn't get any worse I'll probbaly just put up with it. Winter's coming and I am 74 so don't really care about showing off my body but I like to think I don't look that bad so if it's purely a cosmetic thing, so long as it's not on my face I may just wait it out and see if it burns itself out like the dermatologist said. I don't want to take any pills that will affect my immune system which is what she said was another option.

REPLY

My present concern is getting a tooth crowned near the time of my Prolia injection later this month and dental technique. I'd like to chat with
someone who had some dealing with this.

REPLY
Profile picture for crystalwater @crystalwater

My present concern is getting a tooth crowned near the time of my Prolia injection later this month and dental technique. I'd like to chat with
someone who had some dealing with this.

Jump to this post

@crystalwater
I found some personal comments by using the search engine on Mayo to search for Prolia injection and dental.

REPLY
Please sign in or register to post a reply.