My Experience on Evenity for Treating Osteoporosis

Congratulations! Anxious to see your results next month.

I, too, have drug sensitivity. I stopped Evenity after 6 doses. I had spasms, fatigue and brain fog. Tingling on my arms, scalp and finger tips. I was put on Alendronate and after the second dose, I had daily migraines. Not just headaches. The aura too. The CT came back ok. Your feelings are normal. These drugs are potent. Unfortunately, we are long term data for drug companies. I was on Actonel for about 10 years before the FDA said it leads to brittle bones. Whatever you decide to do, listen to your body and research the drug before you commit to a protocol. Best wishes.

Thank you for sharing your experience with the osteoporosis community. I truly understand the position you are in at this time. Yes, the fear of medication for osteo is frightening when we learn of varied side effects. Understand that everyone is different. As a Breast Cancer Survivor twenty years ago and most recently a kidney transplant patient one year 5 months ago, I also am at a cross road making decision on medication.
IT was so excruciating finding an endocrinologist who would see me as a former breast cancer survivor and kidney transplant patient. I am in the NYC area so. you would think with all the major hospital a doctor could be found to treat my osteoporosis lumbar area with my medical history? I finally found a doctor afflicted with two major NYC hospitals. Amen. I was part of a large research study at one of the hospital for glomerulonephritis were this endocrinologist practices at and Thank YOU the higher power , I believe it helped to secure an appointment.

One very important fact is that every woman and or man generally arrives at an osteoporosis diagnosis with prior medical condition, diseases and history of surgeries. Will the doctor one is seeing for osteo treatment be willing to work with your other doctor and monitor you simultaneously , share information and consult with each other to hopefully provide with the data to prescribe a medication to improve osteo status?. What is their experience with other patients similar to you?
NO one person will have the same reaction to medication. We have different blood types, stress, DNA and other medical conditions or disease. The more informed a patient is at an appointment you will not be easily patronize as a patient. Drs. today will not spend more than 20 min on a visits.

I find today many doctors have a PA or nurse to take notes of conversation during your office visits. . It's two sets of ears and vital and if a doctor is not available should you need to contact your doctor at any time. At the time of appointment she/ he writes the notes for doctor. Take a tape recorder order with you. It is necessary to ask the office if this is allowed. IF a new patient cannot write notes fast enough and your want a recording of what was discussed for your own records to review later. Just ask permission.
I have brain fog from the anti rejection meds. Sometimes not always I can forget a conversation and most often remember it later... everyone is different. The memory loss is a bit distressing but I have accepted this as I am ok now with my new kidney. IF dr wants to place you on on medication, as what the advantage is and there is no improvement or side effects appear, ask what would be the next medication he is familiar with and prescribe.

Hope this help someone out there. As a former social worker I would explain to my residents at a national assisted living facility, You have a to be a tick on a dog to sometimes be heard and understood. Drs will come to realize you cannot be compromised.

I am 6 weeks after being told of my OP. Like many here, I am in a state of absolute shock and have been totally OCD about my OP since. I haven't been given a deep dive into how I got here. But I know it wasn't menopause! I'm male. L3-4 T-4.9. Thinking ahead, whatever the cause, I need to restore my spinal column (who knows what my arm bones might be--relying on them quite a bit); anaerobics (including raloxifene if they would even give it to a man--studies show very positive results) are the best course for severe spinal OP. Evinity seems best for me (no Frax, fit, 67). My question is, does anyone know of any males who have taken Evinity. The sex of the authors is not specified in our posts. I reviewed nearly half of the replies in this conversation could not discern a single male. I don't care what they say about OP not being a woman's disease. At this point, it is, and some men get it as well, statistically speaking. [It is like having a low-testosterone--it can cause problems for either sex, but you would never expect a woman to have such a problem--statistically speaking. ] So, again, any knowledge of Evinity (in particular) for males?

I am grateful for your post and so sorry you are/have experienced this. I hope having stopped the evening that the effects are behind you now. That is just it. We don’t really know because we are all unique and our bodies process things so differently.

It is good to know that there are women here who feel really good on it. My gut is telling me to wait.

I have been thinking about going back to algaecal for more information. I was on it but had to go off the strontium because of my eGFR levels but there is algaecal plus that does not have strontium and many women have posted that their bone density increased without the strontium. When I switched to calcium citrate from algaecal on my Dr’s urging, I listened out of fear and giving it a go and that is when I started experiencing a lot of digestive issues and still am. I had to switch to another form of calcium which was better on my stomach but I don’t know if that made things worse. Again even with calcium supplements there is no one form that is universally good for everyone.

I am continuing to listen to what people have to say here but my gut is strong.

I had an emergency appendectomy laparoscopically and almost a year later having nerve pain that is radiating - so we just don’t know. And I thought it was a no brainer - I could have opted to take antibiotics and hope for the best but I went with what was the best option and here I am.

I am not a “magical thinker” but I am open to exploring as many modalities as possible because I think I need more than diet, exercise and supplements. I have avoided a surgery where the drs said what I had would not resolve without surgery and I did heal without the surgery. I healed a frozen shoulder completely in 5 weeks when two specialists, the pt, and friends who had same thing said 18-24 months. So this is why I believe there is a way. Something tells me there is another way for me. At the same time. I am not closing the door on these meds. I hope that is helpful.

Good evening and welcome back. We haven't seen you posting for a while. Was that because of Evenity? Just teasing you!

Yes, I am anxious to see your DXA results. It seems to me that we all hope for positive feedback after starting an Osteoporosis medication.

Thanks for posting.
Chris

I have done a year of Tymlos, to gain bone. Then 2 yrs of Prolia to keep it. Recent bone density test shows bone loss happening again. The current plan it to try bone building again with Evenity. Then I presume something like Prolia (or Prolia again) to try and keep any bone density improvements? It's been hard to figure out exercise because I don't know how much isometric weight it too much. Currently-3.5 in my forearm... Then what? I am 64 and starting to worry about what will become of me. I try to walk every day.

One last thing:
For added support I take supplements. Calcium citrate, B-12, D-3, fish oil, a probiotic, DIM supreme, and vitamin D3 complete with A and K2.

I am so glad I found this group. I have learned more from all of you than from my endocrinologist. I had my last Evenity shot yesterday and couldn't get a straight answer from the medical team about when I should have my Reclast infusion. Based on what I have read here and on other parts of the Mayo website, I think it should be about 30 days from yesterday. How soon do you recommend a bone scan to see the (hoped for) improvement in scores? Is it ok to do the scan the same day as the infusion? (I am trying to avoid more than 1 trip to the office since it takes me about an hour to get there.)

Congratulations on the end of phase one your treatment. 🌸