Forteo: What is your Experience?

sue6, I'm sorry to hear about your experience with Forteo. Did you switch to another osteo med?

gently, it is very kind of you to share this information! With 10 more months to go with forteo, I felt like I didn’t take full advantage of this drug, since I only had bmd increase in L-spine (4.9%) while a big drop in hip even though hip is in osteopenia status before and after forteo. I’ve been thinking about the duration limitation of forteo as well as the downside of ‘long term’ use of bisphosphonates. It’s a relief to hear that repeat usage of forteo is a possibility. My endocrinologist recommended Reclast after the completion of forteo. She was thinking about increasing the duration of reclast to 2 years instead of 1 year as originally planned, after my recent Dexa came back. My main worries is that I’m not building enough bones while on Forteo. Lately I’ve been up my exercises in terms of variety and time. Meanwhile I’m also increasing my protein intake and hope I could get most out of the remainder of this treatment course. I’m so glad finding this community and to learn as much as I can from fellow patients! 🤝

I took teriparatide the generic of Forteo for 14 days. I felt fine until day 11 when I became so dizzy I had to sit in a chair for 3 hours before I could walk without fainting. Also I was sweaty, low blood pressure and the room was just spinning. On day 14 I had a more severe episode and my vision grayed out and I was almost in a complete faint. Fortunately I was at home for both episodes and did not faint or fall. I did faint and fell on cement before I started teriparatide and broke my shoulder and arm. My DEXA scan is normal and yet my endocrinologist insists I take a bone med. I think anyone’s bone could have broken falling on cement as I did even without osteoporosis. She is the only doctor I have who thinks I have even osteopenia. I take calcium and eat a calcium rich diet. I am going to change endo doctors because she is pushing too hard.

mayblin, why is your doctor suggesting 2 years of Reclast? Is this because your hips did not benefit from Forteo?

Hi @leeosteo I'm glad you asked.

My dexa results at 13mo forteo were reevaluated later. Technical errors were found and my endo concluded my hip and femur neck did not have any change in bmd, while my spine indeed had an average 4.9% increase in bmd and tbs improved. All these made me happy. Please note that my hip and femur neck were in osteopenia range to start with, so it might be harder to improve even with forteo. There are many reasons and theories regarding forteo's effects on cortical bones. In the end, the primary end point for most clinical trials is reduced risk of fracture, bmd change as secondary goal.

Yes one year reclast was proposed originally, 2 yr was contemplated briefly. My endo is surprisingly supportive and flexible as I found out recently. After lots of reading including insights and comments on this forum, I realized there are several options in front of me, reclast being one of them but not at the top at this point. Will see how things pan out pending labs and further opinions, second opinions.

Where are you in your therapy? Wish you all the best!

nayblin, I start Forteo on April 1. What are the other options on your list as follow up med?

queenie2030,
the episode on forteo could be related to hypercalcemia. I only mention it because of the faint prior to forteo in which you broke your shoulder and arm. It doesn't sound as though you need to be on a bone med. And I, too, would change my medical provider. I would first find out why this professional thinks I need it. How are your serum labs?
Sometimes people with fractures are given Forteo because it hastens healing of a fracture. Forteo pulls calcium from the bone kidneys and increases absorption from the intestion raising serum calcium. Most patients feel that increase as the blood vessels expand. Blood pressure can become very low. And, we can faint, feel faint or lose balance and fall.
Your doctor may see something that they aren't taking the time to explain. May you never have osteopenia.

Transdermal hrt is at top of my list, although I need clearance from my cardiologist and second opinion(s). Continuation of forteo is another.

Do you happen to have your ctx and p1np tested before the start of forteo? If you had, do you mind sharing your results? I didn't get my baseline checked.

Are you going to have your bone markers monitored during therapy?

Best of luck!

Hi mayblin, my baseline ctx was 335, P1NP 40. My endo has agreed to a 3 & 18 month ctx/p1np during therapy.