Prolia dangers for those with autoimmune disease

@starseed I’m so sorry you have been going through this.

I have been getting Prolia shots for about 4 years. They are done at my Rheumatologist office. My doctor knows all about my autoimmune diseases, and the immune suppressant drug I take.

I’ve never had any reaction to the shots.

I wish you the best

If you don’t mind, could you please post what auto immune diseases you have? This is very important to me as my doctor is pushing it.

Hi Missey,
I have:
Encephalitis
Rheumatoid Arthritis
Sjogren’s Syndrome
Lupus
Hashimoto’s
CVID

Per literature, significant flares can occur immediately or over time (patients might not connect to Prolia to the flare up). And it’s unknown how long this reaction will happen, possibly even after the 5-6 months the drug is in the body.

Yesterday I saw my endocrinologist for thyroid & he was surprised to learn of the class action lawsuits nationwide.

I believe the lawsuits are more for spontaneous fractures & dental/jaw issues, but when I called Amgen for help, my issues were sent to legal right away. I didn’t understand why until later. Mostly they collected info. No help.

I also reported to FDA. Prolia safety rep began calling me shortly after.

The flaring began right away & I’m now having jaw & teeth issues being checked. One thing on top of the other.

My intention isn’t to scare anybody. But we who have moderate to severe autoimmune disease/s need to be careful. We’re going through enough!

I don’t think any pharmaceutical company reps tell drs about all side effects, but the clinical info for doctors is loaded with them. I doubt doctors read through the fine print.

There’s a reason why Prolia is a black box drug.

I also wasn’t informed that Prolia is an immune suppressing immune modulator. So now I’m on 3 immunosuppressants - Humira, Prolia, & Steroids to control the fallout. What a mess. I’m so sick & angry!

I’m glad you’re researching. None of the osteoporosis drugs are free from significant side effects. But maybe one is better than the other. BTW, my Rheum staff thought Prolia was better for me. They were wrong.

Take care.

I’m glad it’s helping you & truly hope it continues to help.

This has been so helpful and I am going to write down the information in your post! My Endocrinologist tried to put me on statins as did my cardiology department, and the pain was just terrible. They all knew I have Hashimoto’s. One also tried to get me to take evinity and I was the one that had to inform them of the black box warning for heart attacks! I am so sorry you have to go through all of this. Hang in there and I hope it resolves quickly one medication that I can take easily is the Repatha

This is inexcusable. I am so sorry. I am very sensitive to medication and I take very little. I have psoriasis but thank God it is controlled by Zoryve cream. I was tested for Sjgroins and don’t have it. I have osteoporosis and osteoarthritis. As of now I am taking nothing for the osteoporosis. My Dermatologist who I respect said she would never take one of the osteoporosis drugs. My immune system is in overdrive. I have 7 drug allergies and borderline hyperthyroidism. I am not chancing any infusions of any kind unless it is life or death. No way to rid body of them until they wear off. I sure hope you get better . Do u have a functional Dr. near you? They can sometimes help the immune system. Prayers.TY for sharing.

Thank you. I think I’ve taken everything available for A I disease in the past 14 yrs but nothing that caused anything near the reaction Prolia has.

I’ve not taken anything that wasn’t reversible or that couldn’t be diminished, including low dose chemo.

It’s shocking to be in this position with no way out & the potential for worsening.

I’ve pushed back on osteo drugs since for 10 yrs, after life-saving quantities of steroids caused orthopedic fallout. I really believed my bones would reverse (they did). But I started steroids again last fall & treatment was urged.

I usually examine a new Rx from every angle but grew tired & complacent. Believed the NP. I have a terrific Rheum & her NP has earned some treatment freedom so I rolled with it.

Who would guess that a little injection designed to help bones would cause a cascade of AI nightmares? Now I know about all the class action lawsuits & why. I never even looked in that direction.

Thanks so much for your kind feedback. I hope you always do well with topical treatment for psoriasis!

I wish I could see Mark Hyman for my fx doctor! I’ve been a follower since he started. EVERY MD should practice functional medicine!

BTW I’m in So Cal between some very well known institutions but they’ve little to offer. Might be going to Scripps though.

Most drs these days don’t want to deal with “complex” cases. (In other words they don’t want to be forced to think 😉 I need a thinker!

Again, I appreciate your support.

Hi. I’m new here. I’ve had Myasthenia Gravis my whole life, an autoimmune version of Muscular Dystrophy. It’s mostly extreme fatigue, vision, breathing and swallowing issues for me. In the past I was diagnosed and treated for systemic Lupus and Fibromyalgia. I’m at the end of scale for Osteoporosis and have lost 2” of height in 3 years. So after having minimal side effects from the multiple covid, flu, pneumonia and RSV vaccines, and not having any success with Boniva, diet and exercise, I went with Evenity after doing the research and discussing with my cardiologist and other doctors.
I had less side effects on Evenity than on any other shot, despite being on the treatment for 12 months. My DEXA was 11% gain in my spine and 1.9% on my hip, not as much as what I was hoping for, but I’m out of the severe zone for my spine, so I’ll take it happily. I discussed my further treatment options with several doctors. I just talked to the specialty pharmacist for Prolia, and I’m going to take it next week. I don’t want to lose what I’ve gained after all that effort.
I know it may not be right for maybe even a lot of people, but for me I can barely go out in public for risk of fall, I walk around the house like I’m on eggshells, and my lifespan is less than 8 years at age 67 due to my multiple conditions, so I’m at the point where the benefits outweigh the risks.
I encourage everyone to take the disease more than seriously, and do what you can to preserve your skeletal structure, because your blood is made in the bone marrow and it will definitely affect your life prospects if you don’t address it early enough.
I take protein powder with fortified almond milk 3x a day, a Viactive calcium chew, multivitamin and dark greens as well as nuts for the omegas and minerals to get about 1200-1400 mg calcium a day, along with the complementary supplements it takes to process the calcium, such as Vit D, K, protein and collagen.
If I had this nutritional information when I was a younger woman, I think I might have been able to stave off the osteoporosis, but all the women in my family have had it and some died within 6 months after breaking a hip. The fact that my hip only gained less than 2% while my spine gained 11% is another wakeup call for me.
I always ate well and was an athlete, but the genetics of osteoporosis, colon cancer and atherosclerosis are coming front and center in my senior years. The Bible says that our lifespans are 70 years, and 80 if one has special mightiness, so that’s probably an average for all.
Take a look at your family history and personal habits, weigh the risks vs benefits for your situation and make your decision, as you and your family will be forced to deal with the consequences. Bear in mind also that most people who post on the internet are looking for information and reporting bad effects, as a lot of people that do well on the meds don’t take time to post on their results. I hope everyone will do well

Every autoimmune disease patient has their own issues to explore when taking Rx.

I started this thread in detail but will reiterate that every patient has to do what’s best for their welfare.

I have steroid-induced osteoporosis which reverses post steroids & pushed back on any drugs suggested for osteoporosis.

My guts were right. I regret receiving this drug. I’m paying the biggest price ever on my journey due to the Prolia reaction I’m going through.

I wish you the best on your journey. I wrote here to tell my tale as the reaction I’m having isn’t as known to the public as are the other adverse reactions.

“Immunogenicity” is a very important word that can’t be ignored. I’m finding out the hard way.

Take care.

After suffering terrible side effects from Prolia I got off after one injection-then my endocrinologist put me on actonel once a week and I now have a swallowing reflux problem-even after stopping it a couple of months ago. I am done with all these osteoporosis drugs- I exercise vigorously, have lots of calcium naturally and always looks down when I am walking. My bone scan showed some osteoporosis.