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Evenity after Forteo or Tymlos?
I would love to hear from anyone who followed Forteo or Tymlos with Evenity. My endocrinologist does not seem to know about this possibility, or perhaps he is bound by studied protocols. I would like to share any studies with him, as well as personal experiences on this forum. He is a great doc so not really questioning him, but he also listens to me and what I want.
I am finishing 18 months of Tymlos (partial dose) with gains so good they are hard to believe- almost 20% for spine and almost 9% for hip. Doc wants to do a "test dose" of Reclast at 1 mg (usual dose is 5 mg). That lasts 3 months and after one month I am to tell him what dose I want next, depending on how I tolerate the 1 mg: I can have 3mg, 4 mg, whatever I want to request. I will be monitored over the next years and able to take a break if things look good.
The thing is, my hip is still at -2.9 and my spine at -2.5 so I wonder if a year of Evenity would get me to osteopenia. To be honest, I am pretty happy with my results ( previous scores were -3.7 at spine and -3.3 at hip, with several spinal fractures). Maybe Reclast will be good enough.
Let me know if you are doing Evenity after an anabolic, via PM or on this thread. Thank you!
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I had Evenity after Forteo, but unfortunately I cannot help you. I was never given the option of partial treatments and my results from any of these meds has never been improvement. My endocrinologist was using standard procedure, and my new endocrinologist remarked that he would not follow Forteo with Evenity. He never said why not, probably because it was too late. I had no side effects from Evenity. My Dexa score had worsened. He put me on Reclast, again the full dosage, and I did have a side effect - muscle pain in my legs which remains 2 months after. All our bodies react differently to meds in general. I am happy you had so much success so far and feel that will continue. I wish I had had your endocrinologist!
The partial dose of Tymlos and ramping up was my idea. The full dose put me in the ICU with afib and tachycardia. With fractures, I was desperate to get on something. He agreed but didn't suggest.
My doc has always been reluctant to put me on Reclast but it is the only option in his view. During cancer treatment with meds that worsen bones, most people do Reclast but he would not put me on it so I lost bone density pretty drastically. Now he knows I have to take it but he is concerned about how sensitive I am to meds. So the test dose and leaving dose up to me are his ideas this time!
Your second doc sounds like my doc in not using Evenity.
I am so sorry you have had no improvement. Is there a parathyroid issue going on? It seems like there must be a reason that none of the meds have helped. I hope something works and thanks for responding!
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1 ReactionI looked at the actual images of my recent DEXA because I was concerned the 19% gain in my spine after 18 months of Tymlos (6-7 out of 8 clicks) was elevated due to fractures. Looks like the gain was only affected 0.1 by the fractures. Here are details for the only lumbar vertebrae I have not fractured:2021 L3 -3.8 and 2023 L3 -2.72021 L4 -3.9 and 2023 L4 -2.6This is pretty impressive!The L2 vertebra that was fractured in 2021 before the DEXA but not fully healed came in at -2.8 in 2021 and-1.6 in 2023, probably elevated by the fracture itself. Arthritis can also have an effect apparently.The total lumbar score for L1-4 went from -3.7 to -2.5 but that includes L2.My hip scores:2021 left femur -3.3 2023 left femur -2.92021 L. femur neck -4.1 2023 L. femur neck -3.6(there is a note that femur neck is unreliable to measure change; also that joint is somewhat eroded with arthritis)I am trying to decide what to do now and appreciate feedback. My doc wants to to a 20% dose of Reclast to see how I do, followed by larger dose in 3 months. I am interested in following up with Evenity and am going to get a second opinion. With 7 fractures total, I am extremely vulnerable to more and would like to get my bone density up even more before "locking in gains."My concern is that if my doc is saving Evenity for later, it won't work as well after Reclast. I need to ask about that. Anyone with experience in this?
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5 ReactionsWith your research capabilities and self advocacy I’m sure you will find the best fit for your ongoing incredible improvement. Please keep us posted. 🌸
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2 ReactionsI want to at least discuss Evenity after I finish Tymlos, versus Reclast. While I am pleased with my results from Tymlos, I still feel vulnerable to more fractures since I already have 7 in my spine. I would like to continue to build bone.
I cannot tolerate Forteo which can be taken for more than two years, and I believe Tymlos still has that two year limit.
My kidney function is not great so Reclast concerns me. I have COPD and read that bone builder is better than anti-resorptive past two years of use, to preserve lung capacity, which is impacted by fractures.
Some of the posters on Connect have done Evenity after Forteo or Tymlos. Did your doctor need convincing? My doc says there is "no data" on it. If anyone has a doc in MA who is prescribing this, please PM me. I may not be able to get in in time but worth a try for a second opinion.
I am not in MA, but both of my doctors insisted on Evenity after Tymlos. I start Evenity this month when I finish the Tymlos. I will post about that when I get the first injection. This site has been reassuring about that.
It seems many are doing this sequence. I am surprised at my doc who is usually so flexible.
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1 ReactionWhat was the main reason the doc didn’t want you on reclast…just curious as I was advised evenity snd then reclast…I’m a little wary & a bit scared of reclast.
Sorry I should have clarified. I was having a problem with atrial fibrillation and at the time, during my cancer treatment, there was a study or studies linking Reclast to increased afib. At this point, I am not having much afib anyway. Right now, the issue is my kidneys....
The medication my doc says he will not prescribe is Prolia, because of the rebound issue.
I am going to do more Tymlos since it is working so well, then hoping to do a few months of Evenity and then really hoping to be able to do enough Reclast to "lock in" my gains. Hope the same for you!
If you have a reason to ask for a low test dose of Reclast, I think you could do that. But chances are you will be fine. My friend just had the full dose and met me at a cafe and was absolutely fine. I just have some other medical issues.
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2 ReactionsMy endocrinologist, chair of endo at a major hospital in MA, won't prescribe Evenity after Tymlos because there is "no data as yet." I got a second opinion two days ago, with the same response. I was told research is being done on that sequence.
I responded that I was afraid that if I do Reclast after Tymlos, and do Evenity later, that effectiveness will be less due to the Reclast. Doc said no, and that saving Evenity for later was a good idea. Of course the two year limit has been lifted for Forteo, not sure about Tymlos but it will be if not already. I also would like better scores before "locking in."
So many on this forum are taking Evenity after Tymlos or Forteo. I participated in a masterclass with Dr. Lani Simpson and a patient who had done this and had more gains on the Evenity after doing well on Tymlos.
I am curious how docs are able to prescribe this course of meds elsewhere but not in my area of MA. How are you getting Evenity after Tymlos? I would seriously travel! PM me if that is better. Thanks!