Bone density drugs
Tried actonel, evista and evenity all with side effects serious joint pain and pain in leg bone and jaw with evenity. Really need some help for what to try as bone density has deteriorated. Thank you.
Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.
@gently, I have this vague recollection of complaints about bisphosphinates back in the early '90s that they left patients with poor-quality bone. Do you know if this is the same type of problem you mention with Evenity & Prolia?
Also, can you point me in the direction of more info re: people with autoimmune problems likely having more problems with the bisphosphinates? I have 3 autoimmune illnesses, so I'd best learn more about this!
@bayhorse
This is just my experience, however, I can tell you that I have several autoimmune conditions and I’ve had issues with 5 different osteoporosis meds. All of them set off a flare of one or more of my autoimmune symptoms.
In addition, prolia actually caused a new autoimmune condition- lichen plano pilarus. I have lost more than 50% of my hair.
I asked my endocrinologist if there was a connection between the meds and my autoimmune conditions, she would not commit to anything.
I know that the cells that are responsible for bone remodeling , osteoclasts and osteoblasts, are part of the immune system, so it seems logical to me that there would be a connection.
bayhorse,
It is the same type of problem. Evenity to a lesser degree. Prolia to a greater degree. Both Prolia and Evenity also create new bone on the outside of your bone work creating as sort of thick scaffold. It looks great on dxa increasing BMD, but it is more brittle bone.
In reading patient experiences, I've noticed that individuals with autoimmune disease have more side effects with bisphosphonates. Osteoclasts, the suppression target of antiresorptive medication, are part of the immune system. The effects seem to depend upon the type of autoimmune disease the patient has.
Worse than just increasing the susceptibility to adverse effect is that some diseases are advanced by the use of antiresorptives. Some though are advantageously repressed by the use of bisphosponates Rheumatoid Arthritis is repressed. There is a new article on SLE indicating that it can be activated by the use of bisphosphonates. There is a concern about mast cells, but I haven't seen anything convincing.
I'm glad that you are looking at this with concern for your vulnerabilities. I didn't want to post a discouraging number of links so have a second comment that you can ignore or explore.
Remember that I am not a medical person and have no personal experience with bisphosphonates. You really have to question anything you read, even when its PubMed.
@gently, thanks once again for the information, and for your quick response. No worries that I will consider you a medical expert; I understand you are not. But you do have a great knack for research, and for explaining the research, and I truly value that and am grateful for it.
I do have lupus, so am especially grateful you let me know that there's now some indication that the bisphosphinates can activate SLE. Mine is mostly controlled with drugs, as is my ulcerative colitis. (My third autoimmune gift, celiac disease, I manage with an extremely strict gluten-free diet, and even then have some issues.) I also seem to have mast cell/histamine production issues. I have had to deal with these illnesses for the past 40+ years, and if any of them were to be exacerbated by an osteoporosis drug, I would be angry indeed.
If you would like, feel free to list any number of "discouraging links" that might pertain to the autoimmune/op drug issue. As far as I'm concerned, forewarned is forearmed. And I certainly will need my questions and evidence lined up solidly when I next meet with my endo.
Meantime, thanks again. I wish you all the best!
@sondrachristo1, thanks for weighing in on this autoimmune/osteoporosis meds issue. I am so sorry to hear about the effect Prolia had on you, and I appreciate your thoughts.
Wishing you all the best...