What comes after Evenity?

Thank you , your response was very helpful!

I had an appointment at the Mayo Clinic on July 29th.
I am still waiting for prior authorization for Evenity.

My Mayo Clinic endocrinologist's recommendation:

"I have recommended initiation of romosozumab. If this is not approved, then either abaloparatide or teriparatide would be acceptable options.

~Treatment with romosozumab would be once monthly for 6-12 months prior to transition to zoledronic acid 5 mg provided once every 12-18 months for 3 doses prior to consideration of bisphosphonate holiday.
~Treatment with either abaloparatide or teriparatide would be once daily for 12-24 months prior to transition to zoledronic acid as above."

I asked about Prolia instead of Reclast (zoledronic acid) and he said that he would not prescribe this drug. He said if I went off it my bone density would plummet. Unfortunately, I cannot recall the rest of his explanation. It was involved.

Earlier this year, I had a tele-health appointment with a metabolic bone disease doctor and his recommendation was Evenity followed by Reclast or Prolia. He said, if I understood this doctor correctly, in regards to Prolia, that I would have to be committed to it and I would probably have to take it for the rest of my life.

I have been concerned about taking Prolia because I also have Hypogammglobulinemia and my IgG levels are low. I have read that Prolia can affect the immune system. When I had a tele-health appointment with Dr. Keith McCormick he was concerned about this condition and told me to get the advice of an endocrinologist.

I am just starting my Rx bone building journey… Thanks to everyone who posts it has been very helpful.

What type of stress fractures and how long has it been? I have 2 metatarsal stress fractures for 27 months and they are also not healing. Curious what meds you have taken and when stress fracture occurred. I really would like to figure what I can do to get my foot to heal. Thank you. I know this is not easy.

@lisanne, I fractured my 2nd metatarsal in my left foot on February 1st, so it has been 7 months. I actually don't know if it has healed. As of June, it was healing. My second and third toes are still inflamed and hurt, but I can walk on my foot with cushiony shoes. There was a thread on here called Foot Osteoporosis which you might want to look at. I was on 20 mcg of Tymlos when I fractured my foot. I have now been on 40 mcg for 6 months. I think that this medicine mostly helps the spine, which is trabecular bone.

There are bone stimulators that your doctor could order for you. My doctor said that they work, but he didn't think I needed it.

I hope that this helps and that you find a way to heal your foot.

Thank you for your reply. I do have a LIPUS bone stimulator. I am on day 70 of using it. Just curious why you are using a partial dose of Tymlos. Do you have less side effects or none? I did start Tymlos 8/24/2024 at 80mcg. I also have MGUS which was diagnosed in August of 2023. There is some research suggesting that MGUS does have skeletal significance. Not sure if this is complicating my healing. Thank you again. Good luck to you.

I am very sensitive to most medications. When I first started Tymlos at the full dose, I couldn't tolerate the side effects. I have stayed on half a dose, because I am a fall risk with low blood pressure. Tymlos lowers blood pressure more. I broke 5 bones and had a concussion within 18 months. I do not want to fall again. The fragility fracture of my foot was the only break that was not from a fall. Also, I have way too much calcium in my urine and am at the high end of the range for the amount of calcium in my blood. I will talk to my endocrinologist about these issues at my appointment next month. I take the medication at night, so I don't notice the dizziness. The only side effects that I have during the day are constipation, frequent urination and vein pain behind my knees. Tymlos apparently expands the blood vessels.

I sure hope that the bone stimulator is working and that you are healing. Good luck.

I am trying to heal. I sure hope that you are on your way to feeling better soon. It sounds like you are managing the Tymlos with care. I do not want you to fall again either. Best of luck to you. Thank you for your concern.

Hi, all, just found this site. This has been very informative for me, and helpful. Rec'd my last/12th Evenity injections 2 weeks ago. The start of my journey was prompted by a fall Aug 2023 in which I destroyed my ankle [had ORIF surgery] and had 3 vertebral fractures. Had a DEXA scan and voila "you have severe osteoporosis". Just had a 1-yr F/U DEXA and was pleased to have 12% improvement in spinal density and 5% ttl hip, but my osteo is still serious. Then, the decision of what to transition to. The rheumatologist recommended Fosamax, Reclast, or Prolia. We discussed pros and cons, she felt Reclast was best option for me [I can't deal with needles]. Have been searching the internet for info, finally tending toward Reclast. Met with my spine doc last week to ask her input [I trust her] and she also felt Reclast was best option for me. So, am waiting for rheum. folks to get it all sorted out w/ insurance and get my infusion scheduled. Plan for me is 5mg, 1X/yr for 3 yrs [3 doses], then a 2 yr holiday. I am scheduled for more ankle surgery but need to have Reclast 1st, as no needles or even dental cleaning for 3 mos following surgery.
I had no reactions/side effects with Evenity. Someone mentioned pain with injection - ask the nurse to slow down the rate of the injection, I did learn that. I am concerned about the muscle/bone pain with the Reclast. I hope not as I have enough pain with my ankle. I am only 73 with good longevity genes so am wondering how this will all carry on over the next 20+ years. I am fortunate to have no other health issues. Has anyone been on Reclast for more than 10 yrs [incl. holidays]? Good luck to everyone, positive outcomes.

@kennylk as far as I know and from what I have been told, it is suggested that we do Reclast for a total of 3-5 years. After that the risk of jaw necrosis or atypical femur fracture apparently goes up. I am in the same boat, wondering if doctors/research have a long term plan as yet. In one article I saw speculation about doing short bursts of Evenity between other meds (bisphosphonates) but with that time limit I am not sure how that would work.

I have also been told three years Reclast (I did two years Tymlos and 4 months Evenity and have several fractures) then maybe a drug holiday but certainly plan on asking, "Then what?" My hope,which may be unfounded, is to then spend some years doing "holistic approaches." (See "Great Bones" by Keith McCormick.

@kennylk Not sure what your upcoming surgery is but if it involves bones needing to heal I wouldn't think you would not want to have a Reclast infusion preceding that. It would suppress bone healing I would think. I have not investigated this topic, so I'm no expert here. But if the surgery will require bone healing afterwards I would suggest checking further about taking a strong suppressive of bone activity.
Maybe others have dealt with this and can comment.