Forteo: What is your Experience?

Posted by leeosteo @leeosteo, May 18, 2023

I'm looking for anyone's experience with Forteo. What were your side effects? Were they tolerable? Did you see good gain in bone density? What med did you follow up with to lock in gains?

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mspatart | @mspatart | Mar 28 1:31am

In reply to @leeosteo "sue6, I'm sorry to hear about your experience with Forteo. Did you switch to another osteo..." + (show)

Yes I switched to Tymlos and it has been very successful. In 6 months I went from osteoporosis to osteopenia in my spine. It worked because I could step up the dose gradually so I could tolerate the side effects of nausea and other misery. Side effects lasted a few days after increasing the dose but went away quickly and this allowed me to get up to almost the full dose. Even at 7 out of 8 units I still got the results in 6 months.

queenie2030 | @queenie2030 | Mar 29 3:46pm

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.

leeosteo | @leeosteo | Mar 30 6:37am

In reply to @mayblin "gently, it is very kind of you to share this information! With 10 more months to..." + (show)

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

gently | @gently | Mar 30 7:26am

In reply to @queenie2030 "I took teriparatide the generic of Forteo for 14 days. I felt fine until day 11..." + (show)

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.

mayblin | @mayblin | Mar 30 10:02am

In reply to @leeosteo "mayblin, why is your doctor suggesting 2 years of Reclast? Is this because your hips did..." + (show)

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!

leeosteo | @leeosteo | Mar 30 10:25am

In reply to @mayblin "Hi @leeosteo I'm glad you asked. My dexa results at 13mo forteo were reevaluated later. Technical..." + (show)

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

mayblin | @mayblin | Mar 30 1:16pm

In reply to @leeosteo "nayblin, I start Forteo on April 1. What are the other options on your list as..." + (show)

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!

queenie2030 | @queenie2030 | Mar 31 6:04am

In reply to @gently "queenie2030, the episode on forteo could be related to hypercalcemia. I only mention it because of..." + (show)

Thank you for your thoughtful reply. My calcium level is normal. I never had the other tests you mentioned. My endo was pushing me to take a bone med long before I fell. She said my normal DEXA scan she did not believe. Because I have been on prednisone for 3 years is why she wants me on a med. I am down to 7 1/2 mg of prednisone now. My rheumatologist and ortho Drs say my bones look fine.