Evenity Shots

@carolyn22 for osteo, why is it better to see an endocrinologist rather than a rheumatologist?

@carolyn22 Your doctor shouldn't just tell you to "pick one," in my opinion. Maybe you should see an endocrinologist. This is their specialty, although rheumatologists deal with these drugs. A drug should be chosen, based on your medical history. For example, I will be starting a maintenance drug after Evenity so that my bones don't regress. My doctors have mentioned Prolia or Reclast. My kidneys aren't great and therefore I will not be taking Reclast, since it should not be taken by people with bad kidneys. Forteo (teriparitide) should be avoided by those who have taken cancer treatments. These are just two examples of drugs that should be avoided by some patients. I weighed heavily the side effects of each drug before choosing. I also visited with my physician about the drugs that most of his patients complain about. Find a doctor you trust to "talk you through" these drugs, the side effects of each, success of each, etc. Good luck!

Are there any patients with severe osteoporosis due to inoperable primary hyperparathyroidism (mainly) who have taken Evenity and were successful in gaining bone strength? I have -5 on the vertebrae (with D8 fractured and may be more). I have severe bone pain, do not know if it is from Evenity - I had my first injection 20 days ago - I feel lousy with a lot of pain. Patients with PHPT (primary hyperparathyroidism) were excluded from studies with Evenity. My endocrinologist uses it off label. It takes at least 3 months before some protection is in place. Thank you.

@bzenbren
I hope your treatment works. I, too, have Sjogren's and have been on Evenity for 8 mos. now. (t is difficult to separate the symptoms between the two. My rheumatologist okayed the treatments and my endocrinologist said it was best for me, too. I have a lot riding on the outcome since I have severe spinal stenosis and scoliosis w/osteoporosis and this is my only chance of getting surgery to fix it. I have had new symptoms of itching, muscle cramping (when my calcium gets low) and some of my Sjogren's symptoms have worsened, like fatigue, dizziness and dry eyes/mouth. I am trying to stick it out and have a CT scan soon which should see if i'm making improvements in my bone density. I would love to hear how you are doing after a few more rounds of Evenity and I would love to hear how your Sjogren's is affected by your treatment. Best of luck!

Hi, My rheumatologist said my bones are improving. Additional testing, a CT of my spine showed some slow healing of a compression fracture at L1-L2.
I finish my 12 month Evenity course on 12-1-26. 🥳 Rheumatologist will determine next line of treatment after that based on how my bones growth looks then. Like all of the treatments available we need to remember how unique each of us is. Where we start, any comorbidities, clusters of symptoms, such as Sjogrens, Fibromyalgia and 4 spinal surgeries like me. We are all "blessed" differently.
I wish you great luck with Evenity. My Dr. is really stoked about the results he's seeing. Sjogrens is a mysterious burdensome illness too. I have been diagnosed & undiagnosed with it. Treated aggressively then nothing. My husband & I are headed to FL for the winter. The cold damp air of autumn in WI is getting to us.
The other thing I do is occasionally to a variety of podcasters discussing osteoporosis. I don't accept their theories and advice at face value but try to find the truth within. I borrow a bit from everyone's truth.
I probably haven't helped you, but I support a fellow soldier!

@bzenbren
I think it was very helpful to hear your story. I am really glad your dr. is "stoked' about the results and hope mine will be, too, after my CT this next Monday. Must have been a real
challenge to have 4 spinal surgeries. I am praying that I can have at least one. I understand about the back and forth Sjogren's diagnoses. I had a positive antibody test, lip biopsy, Schermer's and there are those who have the disease with none of that proof. Hopefully a test
will be found to confirm it in all who have symptoms. I will be interested in which drug your dr. advises you take after the Evenity. I have heart disease and my cardio didn't want me on Evenity but I explained the consequences of worsening osteo and he said it was worth it. I don't know how other osteo meds affect the heart but will be choosing wisely I hope. It sounds like your last Evenity treatment will be a great holiday gift!. Thank you for sharing your story with me and have a wonderful time in Fl. I live in Austin and we would love some of that cool Wi air! I would love for you to let me know how the remainder of your treatment goes. Best of luck1