No response to forteo

I would open a conversation with my prescriber regarding the possible reasons for no response to Evenity and next steps to confirm. If no help is forthcoming, I would seek a second opinion from somewhat more in the know!

I took Forteo for 21 months. I tolerated it well and saw improvements in the first year but the Dexa scan at 21 months showed it wasn’t working after the second year. It was determined that I had very low alkaline phosphatase in my blood (7-11 with 25 considered low). I had a complete metabolic panel blood test to determine this. So then I was diagnosed with Hypophosphatasia ( low ALP ), a rare disease. Of course I am not saying you have this, just telling you of what I discovered. I now take Strensiq to help my body take calcium into my bones. Getting ready to start Evenity though as my T-score dropped by .3 to -3.4 and have had 3 femur fractures.

@sheilabisso Thank you for your response. I will ask my endocrinologist about this. How are you doing on the evenity? Side effects?

When I took Forteo eight years ago, I had no response on DEXA at one year. Hip score actually went down a tiny bit and everything else stayed the same. I was very upset. My doctor told me not to worry, the bone building effects seen on the DEXA sometimes takes time. I continued on at for another year, and at the end of two years the DEXA showed significant gains in all areas. I believe sometimes the effects are delayed on DEXA. I would suggest talking with your doctor. In my case, the DEXA at one year was too early to show the results. I am taking Forteo for the second time now, after an eight year break.

I would hang in with the Forteo until the end of the 2 years if I were in your situation. Holding even in Bone Mineral Density BMD is showing that the Forteo is helping, and changes detectable with DEXA take a long time to show.

You can get your Bone Turnover Markers BTM tested to try to assess it is going along the way. You can see other discussions on this site about those. If your doctor will not do P1NP and CTX tests, then you can get it done inexpensively yourself.

I also self-pay tested for hypoparathyroidism, which is rare, but it is a cheap test. Someone else on this site discovered after years that this was the root cause of her Osteo.

@hipsalve I found the same experience and also on Forteo (well actually the Teriparatide) for my second round, also 8-9 years later. Did you take a maintenance drug in those 8 years between? If so, what was it? Thanks : ). Nice to hear of someone else doing a second round. What will you do in follow up after this round is completed? May I ask what your current T-scores are?

@broken13 I took Forteo eight years ago as my spine was -3.6, then took Reclast one time. My numbers improved in all locations. My TBS scores were always good. No fractures. A few months ago was in a car accident and fractured T1. I checked a DEXA scan afterwards and it had gone down to -3.6 in my spine again despite doing regular exercise and eating well. I had to do something, and I feel very nervous about Evenity, which is what my doctor preferred I do. I know Evenity is fairly new and want to wait until more data comes out on it. After reading about how Evenity blocks sclerostin, which is cardio-protective, I decided to go on Forteo for a second round. My doctor was completely fine with that. So that’s where I am now. I’ll do Reclast again after Forteo. Then she wants me to do Prolia but I’m not sure I want to do that. I’ve seen a few people doing a second round of Forteo ( or Forteo then Tymlos which is very similar) on this site. How did you come to do a second Forteo round and do you know others who have/ are doing this?

Advice from my endocronologist has been that testing needs to be after 2 years on Forteo. I've been on it for 18 months and due to other non-related issues, she ordered a DEXA after 18 months. I was happy with the Lumbar Spine which went from -2.7 to -1.9 out of osteoporosis and back to osteopenia!
However, the Left Hip was insignificant going from -2.6 to -2.5, and the Femoral Neck from -3.3 to -3.1.
She said these are typical of Forteo scores, and that the science doesn't know why the discrepancy exists and why the lumbar spine reacts so well in comparison. She wants me to stop the Forteo and begin Reclast.
As per the advice I've read on this blog, I asked for a longer infusion time, and perhaps even a lower dose. She said (Kaiser) won't do that unless I have a bad reaction, then the next time they will! (typical)
At this point I don't want to start Reclast, as there are so many negative responses that I've read about on this blog. I'm not certain what to do.
Age 75

@hipsalve I was diagnosed in my 40's with osteoporosis . I tried Bisophomates, but had a severe reaction and then got lost in the medical process of starting something else until I started to fracture. I was in a small boat and went over a few waves that resulted in a few compression fractures in my spine. I was actually flown to hospital and had to heal to walk again. It was a brutal time and a series of 13 spinal fractures. Forteo literally saved my life. Prior to spinal fractures I was -4.2. After fractures they can only measure my thigh and hip now. Currently they are at -3.2 Femoral neck and -2.8 hip. Which is why I am back on Teriparatide now. I have not fractured since 2016. I will go back on Raloxifene for maintainance and redo Forteo in 5 years if numbers indicate. Evenity can only be followed up with Prolia or Reclast, so that feels like a dead end for me, given my reaction to bisophomates and the dental episode I had from the one shot of Prolia. Plus my endocrinologist said my fracture risk was too high for Prolia's possible risk of spiral fracture in my case. Every one is different. It is good you are able to tolerate Reclast. : )

I would suggest it is too early to quit Forteo. I took the full 24 months to get good results. Slow but sure is the way to go.