Prolia dangers for those with autoimmune disease

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

You make an important point "risk vs. benefit".
9 years ago, I decided to go off osteoporosis medications. I had been on Fosamax and Evista. My PCP said I was in good health and could live a long time, so she was worried about me breaking something and being permanently handicapped. She told me to see an endocrinologist. He prescribed Prolia. Last year the local place doing my bone scan suggested I switch to Fosamax after 7 years of Prolia. My PCP said he was not qualified to make such a decision, and I should see an endocrinologist. I went to Mayo, and they told me to stay on Prolia for another five years because it has anti-bone tumor properties...and I have lung cancer. That was an important consideration for me! The lesson - talk to knowledgeable specialists who can consider your total health profile

It sounds like you’ve dealt with a lot. I’m glad you have great medical support.

Unfortunately autoimmunity & Prolia can be a very bad mix. It’s on Amgen to be sure the adverse effects with autoimmunity are in the large print & not in the microscopic print.

An autoimmune disease patient does not want an escalation in their condition(s) as I’ve had & continue to have. Our battle is remission, not escalation.

It could even prove deadly for reasons I originally posted to this thread re: Prolia & Autoimmunity.

It’s a black box drug with many class action law suits for a reason.

I have a terrific, well known Rheumatologist who was unaware of immunogenicity with Prolia.

Rheumatologists & Immunologists should absolutely be better informed by Amgen about this complication so they can discuss with their patients.

Desperate for help I called Amgen. The first thing they did was send my case “to legal”. I didn’t understand what this meant. Now I know. I’m one of many.

Agreed, doctors need to be up-to-date on relevant developments. That is why it matters to see a Specialist who also has the appropriate subspecialty in the issue. It is surprising to see the difference in treatment decisions.
As far as Amgen passing you to their legal department, I would expect any pharmaceutical company to do the same thing. Their legal departments no doubt instruct them to do that.