1. < Osteoporosis & Bone Health

What Prolia side effects have you experienced?

Posted by inch74 @inch74, May 3 9:28pm

Hi, this is my first time posting. I’ve had cancer twice and had my stomach removed. When I was 48 I was in the throes of depression after losing two sons in a 5 year period. I collapse at home, my husband carried me to the car and drove the very short(small town) distance to our hospital. I’d had a “cardiac event”, my bloodwork was crazy. After a few hours my blood work starting to slowly move in the right direction. I’m told I have broken heart syndrome. While I was at the hospital I went to pick my cup of water up and broke my ribs.
I had my bone density tests and I was told my bones are awful. Because I wasn’t 50, it didn’t give me an absolute fracture risk. My T scores (I think I’m reading the report properly??) are spine-3.5/femur-3.8/hip-3.8. Is that T scores? Anyway, I’m 50 now and I’ve had 2 Prolia shots. I’ve had a lot of back pain, but I have moderate compression fractures, I’ve had a bad cough (could be unrelated), but right now I’m not sure what’s going on. Yesterday afternoon I noticed that the right side of my nose and cheek right beside my nose was red, hot and swollen. I woke up this morning and it was worse so I went to the doctor. He said he doesn’t think it’s a sinus infection, he thinks it’s the skin. I noticed that skin infections can be a side effect of prolia. He started me on antibiotics, so I’ve only just started them today. How serious are skin infections on Prolia? Has anyone else had skin infections?

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

babs10 | @babs10 | May 4 9:55am

@inch74, I haven't taken Prolia so can't respond to that, but I want to wish you every possible good thing moving forward. You have endured so much and "broken heart syndrome" sounds right. This isn't why you are here so I'll move along, but sending you all positive vibes and gentle hugs. Hang in there. Someone in this forum will have helpful information - they always do. < 3

REPLY
1 reply
jillgirl | @jillgirl | May 5 6:36pm

I have this skin condition with Evenity. This month's injections caused a huge herpes sore to appear above my mouth in addition to the rapid onset of extreme itching and facial rosacea and eczema producing hot, burning red blotchy skin.

I am being told I should start Prolia after the Evenity.
Not a comforting thought.

REPLY
1 reply
inch74 | @inch74 | May 7 12:01pm
In reply to @babs10 "@inch74, I haven't taken Prolia so can't respond to that, but I want to wish you..." + (show)
@babs10

@inch74, I haven't taken Prolia so can't respond to that, but I want to wish you every possible good thing moving forward. You have endured so much and "broken heart syndrome" sounds right. This isn't why you are here so I'll move along, but sending you all positive vibes and gentle hugs. Hang in there. Someone in this forum will have helpful information - they always do. < 3

Jump to this post

Thank you so much. I get a little teary with kindness, I’m not sure why. Take care. ❤️

REPLY
inch74 | @inch74 | May 7 12:05pm
In reply to @jillgirl "I have this skin condition with Evenity. This month's injections caused a huge herpes sore to..." + (show)
@jillgirl

I have this skin condition with Evenity. This month's injections caused a huge herpes sore to appear above my mouth in addition to the rapid onset of extreme itching and facial rosacea and eczema producing hot, burning red blotchy skin.

I am being told I should start Prolia after the Evenity.
Not a comforting thought.

Jump to this post

After I left this comment I turned to dr.Google and just typed in red inflamed skin on nose and upper cheeks and Lupus came up a million times. The pictures look a lot like my rash, but I think I’m going to continue my antibiotics and stop seeing Dr.Google.

REPLY
1 reply
jillgirl | @jillgirl | May 7 2:06pm
In reply to @inch74 "After I left this comment I turned to dr.Google and just typed in red inflamed skin..." + (show)
@inch74

After I left this comment I turned to dr.Google and just typed in red inflamed skin on nose and upper cheeks and Lupus came up a million times. The pictures look a lot like my rash, but I think I’m going to continue my antibiotics and stop seeing Dr.Google.

Jump to this post

Good idea. I have Sjogren's and those with this autoimmune condition - about 14-18% - also develop lupus. I have been tested for lupus my entire adult life as I have had the 'butterfly' type rash/redness. All tests were negative. Later was told it was rosacea. Then I was told I have fibromyalgia, then a type of connective tissue disease (no name) and now told it is Sjogrens. It was my dentist who first suggested Sjogren' s and my optometrist who tested for Sjogrens and made the rheumatologist suggestion who did more the blood tests. My symptoms have been all over the map since my early 30s. Skin redness/itching, inflammation of the iris, inflammation of the carotid artery - anything weird.
Now they expect me to have 'normal' reactions to Evenity??

REPLY
1 reply
inch74 | @inch74 | May 7 5:46pm
In reply to @jillgirl "Good idea. I have Sjogren's and those with this autoimmune condition - about 14-18% - also..." + (show)
@jillgirl

Good idea. I have Sjogren's and those with this autoimmune condition - about 14-18% - also develop lupus. I have been tested for lupus my entire adult life as I have had the 'butterfly' type rash/redness. All tests were negative. Later was told it was rosacea. Then I was told I have fibromyalgia, then a type of connective tissue disease (no name) and now told it is Sjogrens. It was my dentist who first suggested Sjogren' s and my optometrist who tested for Sjogrens and made the rheumatologist suggestion who did more the blood tests. My symptoms have been all over the map since my early 30s. Skin redness/itching, inflammation of the iris, inflammation of the carotid artery - anything weird.
Now they expect me to have 'normal' reactions to Evenity??

Jump to this post

Wow, I relate 100%. It feels like whatever can go wrong does go wrong. I’ve had repeat spontaneous pneumothorax in one lung. It was collapsing twice a month and 90% of the time required a chest tube. I’m pretty tolerant to pain and different procedures, because I’ve been sick my whole life. Chest tubes however, so painful. So I had surgery to prevent it from happening, which help up until my first son died. The first surgery had me out of the hospital in 3 days, but the very same surgery the second time had me in the hospital for 3 weeks.
I don’t have a stomach so I never really know if I’m absorbing meds as I should, and my weight has dropped as low as 85 pounds.
I was FaceTiming my daughter and she saw my face and said “aw, not again mom” and I was so surprised, I have no memory of having this rash(I say rash, but really it’s just red, hot, inflamed skin, no dots or open wounds, not itchy) before. But my daughter remembers taking me to the doctor about it a couple yrs ago. My memory is terrible. I’m not sure if it’s because I’ve had so many surgeries, traumas, PTSD…many a combination.
I’m going to make sure I show the picture to my regular doctor, she can do blood work if needed.
I wish you and your health all the best. ❤️

REPLY
1 reply
jillgirl | @jillgirl | May 7 7:53pm
In reply to @inch74 "Wow, I relate 100%. It feels like whatever can go wrong does go wrong. I’ve had..." + (show)
@inch74

Wow, I relate 100%. It feels like whatever can go wrong does go wrong. I’ve had repeat spontaneous pneumothorax in one lung. It was collapsing twice a month and 90% of the time required a chest tube. I’m pretty tolerant to pain and different procedures, because I’ve been sick my whole life. Chest tubes however, so painful. So I had surgery to prevent it from happening, which help up until my first son died. The first surgery had me out of the hospital in 3 days, but the very same surgery the second time had me in the hospital for 3 weeks.
I don’t have a stomach so I never really know if I’m absorbing meds as I should, and my weight has dropped as low as 85 pounds.
I was FaceTiming my daughter and she saw my face and said “aw, not again mom” and I was so surprised, I have no memory of having this rash(I say rash, but really it’s just red, hot, inflamed skin, no dots or open wounds, not itchy) before. But my daughter remembers taking me to the doctor about it a couple yrs ago. My memory is terrible. I’m not sure if it’s because I’ve had so many surgeries, traumas, PTSD…many a combination.
I’m going to make sure I show the picture to my regular doctor, she can do blood work if needed.
I wish you and your health all the best. ❤️

Jump to this post

Good idea to have a photo as evidence. And I noticed you said she.
I try to stick with female doctors if possible. I endured three male gynecologists before being diagnosed with endometriosis. It wasn't well known when I was in my mid-30s and I was told I should get pregnant to stop it, I have it because I have not reproduced enough and a complete hysterectomy.
I finally found a female gynecologist at a medical school and she offered the surgical laparoscopy as treatment.
Take good care.

REPLY
1 reply
inch74 | @inch74 | May 14 12:04am
In reply to @jillgirl "Good idea to have a photo as evidence. And I noticed you said she. I try..." + (show)
@jillgirl

Good idea to have a photo as evidence. And I noticed you said she.
I try to stick with female doctors if possible. I endured three male gynecologists before being diagnosed with endometriosis. It wasn't well known when I was in my mid-30s and I was told I should get pregnant to stop it, I have it because I have not reproduced enough and a complete hysterectomy.
I finally found a female gynecologist at a medical school and she offered the surgical laparoscopy as treatment.
Take good care.

Jump to this post

I’m sorry, I’m new to this message board and I guess I don’t know how to figure out if there was a reply to my comment, so I’m really late seeing this.
Yes, I’ve always preferred female doctors. I stopped seeing my nurse practitioner and started seeing this doctor, I’m sort of working out the kinks with her. I have such a long medical history that I find myself wondering if she’s considering everything.
I don’t know how bad my situation with my bones is to be honest. I don’t know what the numbers mean, I’m turning 50 this year and I feel much much older. Do you know what the relevance of the T scores are, I didn’t give starting Prolia much thought. I really should have researched better. I had a lot going on. Do you know if I should be concerned with my T scores?

REPLY
Please sign in or register to post a reply.