Need Advice - What drug to Follow Up Evenity

Posted by prehorselover @prehorselover, May 8 5:03pm

I finished my 12th injection of Evenity on March 28th. It’s the only medication I’ve taken. Doctor recommended Prolia. I told her I would do ONE only. Then Reclast, then off drugs. My goal is to be able to ride horses for the rest of my life. I was diagnosed after I broke my shoulder. I’m 66. I suspect I have good bone quality. Started HRT.

Is that a good strategy?

Can you go from Evenity to Forteo?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

@michaellavacot

Hi @prehorselover - It's pretty difficult to put a probability of a potential break when a horse falls on you. I assume it's pretty high regardless of your T-scores. 🙂

If I were you, I would try the alendronate + HRT for 18 months and get another DXA scan to see where you're at. I'm not sure what target you should be shooting for specifically, but if you feel it's still to low, then you could do another round of Evenity. That should really push you over the top.

Jump to this post

If a horse falls on you, I think you have more to worry about than broken bones. She said if she falls off the horse.

REPLY
@dlmdinia

If a horse falls on you, I think you have more to worry about than broken bones. She said if she falls off the horse.

Jump to this post

Sorry, I was being facetious. A fall from a horse can be really bad since you are so high up . Depending on how you fall and land, it would be easy to break a hip even without osteoporosis or osteopenia. All we are doing with meds is trying to lower our risk. I really don't know what the target should be here. Your doctor will likely have better guidance since they have clinical experience.

REPLY
@prehorselover

I’ve never taken Fosamax. My orthopedic surgeon advised against it, so I went straight to Evenity.

Then I was referred to a Rheumatologist, who is very nice, but she doesn’t use tests (bone markers) recommended by the experts I follow on Social Media. She recommended Prolia and ordered it. I can start anytime after I get a blood test for Vitamin D and something else. I don’t remember.

You recommended on your video getting a CTX text. I requested that the doctor include that in the order. The assistant had never heard of CTX. I’m hoping it’s an option. Is there another text you recommend?

I’ve been worried about the delayed length of time after ending Evenity and starting Prolia or another drug. My rheumatologist said it wasn’t a problem, but I don’t fully trust her opinion. Starting immediately makes more sense. Good for you!

Jump to this post

I received my last Evenity injection mid February 2024. Needed a tooth extraction and an implant placed. Unfortunately the end of May 2024 I was in the hospital with colitis. During my stay I started having severe back pain. 3 weeks later I was diagnosed with another compression fracture and a sacral fracture. I had 6 compression fractions over a 5 month period the later have of 2022 which is why I started Evenity. I’m supposed to start Prolia as soon as my implant is set which is the end of this month. I’m really concerned as to how to proceed. I certainly hope you have better results than I.

REPLY

My t-score is -4.8, so the endocrinologist wants me to start Evenity ASAP. I am concerned about stroke risk, since I also have AFIB. And what do I transition to when the year of Evenity is up? My mother and aunt both had trouble with Fosamax, so I want to steer clear of that. I envy the person who said they were back on their HRT. I cannot find a doctor to prescribe it for me (I'm 65). I've asked three so far and all have refused, for various reasons, ranging from the fact that I am over 60 to the belief that it will not help my osteoporosis. Should I try to see a rheumatologist before I commit to anything? Would they be more willing to at least think about HRT? I am feeling undone by all this, since these decisions will have definite consequences, either good or bad. Sigh.

REPLY
@callmekate

My t-score is -4.8, so the endocrinologist wants me to start Evenity ASAP. I am concerned about stroke risk, since I also have AFIB. And what do I transition to when the year of Evenity is up? My mother and aunt both had trouble with Fosamax, so I want to steer clear of that. I envy the person who said they were back on their HRT. I cannot find a doctor to prescribe it for me (I'm 65). I've asked three so far and all have refused, for various reasons, ranging from the fact that I am over 60 to the belief that it will not help my osteoporosis. Should I try to see a rheumatologist before I commit to anything? Would they be more willing to at least think about HRT? I am feeling undone by all this, since these decisions will have definite consequences, either good or bad. Sigh.

Jump to this post

@callmekate
I also woud avoid Evenity because of the afib.
I suspect HRT will not be sufficient fracture protection for your bone density .
Have you considered the bone building medications Tymlos or Forteo.
I agree with your endocrinologist's encouragement to begin treatment right away.
I would ask the endocrinologist for Tymlos and ask for an introductory pen so there'd be no waiting.
A gynecologist might be more likely to prescribe HRT.
You could see a rheumatologist or another endocrinologist, except I wouldn't encourage the wait.
Reclast is another option. I consider Tymlos and Forteo better medications, but Reclast would offer you fracture protection.
Bless your struggle with luck

REPLY
@gently

@callmekate
I also woud avoid Evenity because of the afib.
I suspect HRT will not be sufficient fracture protection for your bone density .
Have you considered the bone building medications Tymlos or Forteo.
I agree with your endocrinologist's encouragement to begin treatment right away.
I would ask the endocrinologist for Tymlos and ask for an introductory pen so there'd be no waiting.
A gynecologist might be more likely to prescribe HRT.
You could see a rheumatologist or another endocrinologist, except I wouldn't encourage the wait.
Reclast is another option. I consider Tymlos and Forteo better medications, but Reclast would offer you fracture protection.
Bless your struggle with luck

Jump to this post

I was just thinking about Forteo last night, since that was another medication offered to me. I have read that it caused bone cancer in rats, but not in humans, and that makes me nervous because I have already had a weird non-bone cancer (thymus), so wonder if I am more likely to develop another. It feels as if I have no good options, drug-wise, and yet I don't want to break a hip or a shoulder or anything else. My gyno is one of the ones who said no to HRT. I know it won't fix my bones, but it sure wouldn't hurt any, and I felt better when I was on it. Oddly enough, my cardiologist is okay with me trying the Evenity. I see her in a few weeks, so can clarify that with her. No matter what I do, I'll need to see my dentist before I can start, to have my unopposed wisdom tooth out. I'll be calling him today. Thank you so much for your reply. I'm so glad I've found this community. Kate

REPLY

Hi Kate, the thyoma is an interesting complication. Your physicians probably have more information about how, or if, it affects a decision for hormone replacement as well as the use of teriparatide. Do they think that it is a secondary cause of the osteoporosis. If you had it surgically removed, you could have somatic testing (genetic testing of the tumor itself). This would give you information about risk of metastasis and risk of recurrence. wh
Your biopsy material would remain available, but maybe not of sufficient size.
We're equally glad you found us.

REPLY
Please sign in or register to post a reply.