Prescribed Tymlos after Evenity

@hollygs A couple of more points. First, your doctor who was alarmed at the Evenity followed by Tymlos situation wanted to switch you right away to Prolia, has a very different set of fears than I have.

I see your current sequence as unproven to be beneficial but definitely not proven to be harmful. Where as Prolia is proven to have two serious possibly life altering problems. Extremely rapid loss of bone after discontinuing Prolia and the potential for multiple fractures in addition to the bone loss.
Prolia is the one that scares me.

Also why immediately switch to another med. Why not find out if the Tymlos is working or not? That's the reasonable path in my opinion.

Second, you mention Fosamax and dental work. I just want to check whether you mean "invasive" dental work like tooth extractions and implants or above the gum line work like fillings and crowns etc. Bisphosphonates and Prolia are of concern with the invasive type but not crowns and fillings. You probably already know this but I wanted to mention it just in case. Good luck!

@sunny65 It sounds like you've been very proactive about your care, and that's wonderful! I was put on Fosamax after Evenity by a new-to-me endo, but I had been told by my previous metabolic bone specialist that he would put me on Tymlos after Evenity. I switched back to him and started Tymlos 6 months after stopping Evenity. This delay was because it took a while to see the doctor and then to have Tymlos approved by my insurance. I responded well to Evenity and my T score went from - 4.5 to - 3.2. I won't know anything about how the Tymlos worked until my next DTX, and even then everything is relative and long-term improvement is the goal. I have read that the usual interval after Evenity is 4 weeks, but I have not heard that from a medical proessional so am not sure. Your labs and a new DTX will inform your doctor about your response to Evenity. You are correct, there is very little information available about the use of Tymlos after Evenity. As I previously mentioned on this thread, I contacted the manufacturers of both drugs and was told that currently there are no studies available about the Evenity >>Tymlos sequence. I will say that at a certain point, I was extremely stressed out about all of this. I had a painful spinal fracture, multiple rib fractures, bone marrow edema and fractures in one foot and other conditions. I could barely get around and yet I was going from doctor to doctor to labs, radiology, PT, OT and so
on. Finally, one day I paused and realized that the stress was making me worse. I could barely function, I was exhausted and I couldn't do all of this. I decided to eliminate stress, and relax as much as possible. I took a break from all the medical stuff except getting the Evenity once a month, listened to music, meditated and focused on positive things and eventually I was calm, not overwhelmed and better able to proceed with my life. I hope you will gift yourself compassion and kindness. You're handling an awful lot, and you've been very strong. You don't need to carry it all the time.

Hi @windyshores ,
Actually , my endocrinologist called me today. He is concerned to stop Evenity now because insurance might cancel coverage on Evenity and then don’t approve Tymlos, because they both anabolic . He still insists that my increased pain is due to fractures not a side effect of Evenity. I am thinking to call insurance and ask if they would approve Tymlos in the middle of my treatment. Besides he worries that insurance might not approve Tymlos even I finish all 12 months of Evenity for the same reason. He said that I might have to go on Prolia after Evenity which I completely was against but again he stated that Prolia rarely causes back pain. Not sure if our conversation was that productive . I am going for my MRI next week and if there are no new fractures, I am going to call him back and maybe ask again. All I know that pain I am going through is not sustainable for a long time and something needs to be done.

@hollygs ,
Thank you for response. You are right about stress. The most is due to pain and thinking that I am going to be bedridden for the rest of my life. I am not sure if Evenity is the cause of my pain but definitely contributing to it. My lower back pain started a couple months before Evenity. I slipped and fall in 2022 I thought that I fractured my back but x- rays didn’t reflect fractures. I found out about fractures in my vertebrae at the beginning of 2023 after bone scan. They hurt but stopped in a couple of months. My doctor wasn’t concerned so much and told me to see endocrinologist in the future and do DEXA test .It was very busy time between my very sick mom and job- so I didn’t go for a few months and when my DEXA test last September came out -4.8- everyone got concerned. But I didn’t have so much pain. I know it doesn’t do any good blaming myself now. But I delayed to start medication - Evenity till July . It took time to find a doctor and insurance approval. I went and had another DEXA test in October ( after 5 injections) and my T score was even worse ( same place I had the first one) -5.1. . Not sure what to make of it but endocrinologist is saying that it’s not about numbers but about fractures. I am still seeing my pain doctor on Monday and later next week MRI. After that I decide if I insist to go on Tymlos or finish Evenity and then see if I will be approved Tymlos or have to do something else. I tried to meditate but so far don’t doing much. I probably should try harder to fight my stress.

@awfultruth Thank you for your reply. I agree with your points. I too have grave concerns in regards to Prolia. The concern in regards to Tymlos before or after Evenity is that you may start to produce abnormal bone. Tbh, the timing of introducing certain new medications seems to be lacking standard protocols and is up to the doctor's discretion. In my case, I'll do a DTX and TBS after I complete the first year of Tymlos. And in regards to Fosamax and dental work, that endo believes that you have to be off it for any dental work and that's unreasonable. Luckily, I have found a new metabolic bone specialist.

You're doing an amazing job during a very stressful time. Radius, which is the manufacturer of Tymlos, has a program called Radius Assist. In the event your insurance doesn't cover Tymlos, they offer patients who qualify financial assistance. Their number is: 866-896-5674. I've found them to be very helpful. There are also state programs available that you can look into. Best wishes to you as you continue on this journey. I hope you have a Happy Thanksgiving.

This is one of my fears with Polia (from drugs.com). My immune system is already on the deficient side.

"Yes, Prolia (denosumab) does appear to weaken your immune system. Research has shown people who take Prolia are at an increased risk of serious infections leading to hospitalizations, including serious infections of the skin, abdominal, urinary tract, and ear. There is also a higher chance of developing endocarditis (an infection of the heart’s inner lining, usually involving the heart valves) in those who take Prolia, and those with advanced kidney disease have an increased risk of severe, life-threatening, low calcium levels (hypocalcemia) developing, particularly if they have a metabolic condition called chronic kidney disease-mineral bone disorder (CKD-MBD). For some side effects, people administered concomitant immunosuppressant agents (such as prednisone or cyclosporine) or with impaired immune systems may be at an even higher risk.

Doctors may need to consider discontinuing Prolia in people who develop serious infections or other severe side effects."

I would echo the info on Radius Assist though you need an MD to prescribe. Doctors seem nervous to prescribe protocols that aren't well tested. We need more research!

This is a great comment from @awfultruth:
"I see your current sequence as unproven to be beneficial but definitely not proven to be harmful. "