Almost 1 year on FORTEO: I have been... - American Bone Hea...

American Bone Health: Osteoporosis

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Almost 1 year on FORTEO

GDCM profile image

I have been taking Forteo since January, and have had zero side effects. I am scheduled to see my doctor and have a DEXA scan early next year to see results of increased bone mass (hopefully!). I was surprised to learn after I complete my 2-year regime of Forteo, that I will need to continue on osteoporosis medication. I am unable to take Fosomax, or any type of similar Bisphosphonate drugs due to a past history of jaw osteonecrosis… while on Fosomax for a short time. I dont know what other type of treatment is available, other than Bisphosphonate drugs once finishing Forteo. Has anyone had a similar situation; and what continuing treatment were you given?

22 Replies

I haven't started the Forteo yet, maybe by the end of the month. I will not be able to take biphosphonates either due to my stomach issues. I just posted asking for anyone to let me know how they've dealt with treating and/or not treating after Forteo treatment.

I think you could take prolia. The main thing I don’t like about Prolia is that you can’t stop taking it. That scares me. Good luck to you.

joannge profile image
joannge in reply to Louie_2

Thank you!

lawdog profile image
lawdog in reply to Louie_2

I believe you can discontinue Prolia safely as long as another medication is immediately started to replace it. I had 2 years Forteo with 12% increase in bone density where I needed it with no reactions, followed by annual Reclast infusion for three years, and now starting Prolia as there is just one small area at the base of my spine that isn't responding as well as my rheumatologist would like.

Thanks, I will check out Prolia…but I thought there was the same risk of having jaw osteonecrosis. (Don’t like the idea of not being able to stop taking it as I’m in my 60’s…)

Met00 profile image
Met00 in reply to GDCM

I think prolia carries the same risk of jaw osteonocrosis as bisphosophonates. This is from the UK patient information leaflet for prolia: "A side effect called osteonecrosis of the jaw (ONJ) (bone damage in the jaw) has been reported rarely (may affect up to 1 in 1,000 people) in patients receiving Prolia for osteoporosis. The risk of ONJ increases in patients treated for a long time (may affect up to 1 in 200 people if treated for 10 years). In addition, in order to stop taking prolia, you'd need to go straight on to another bone medication, usually a bisphosphonate, which of course isn't suitable for you.

It might be worth asking your doctor what the worst case scenario is if you don't take any other bone meds after forteo. I'm fairly sure it doesn't carry a risk of rebound fractures, and believe it would simply result in a slow loss of bone density over time. It may be that you can stall that with supervised weight training, if that's possible and safe for you.

I do wish doctors would consider the long-term implications of taking certain medications and plan accordingly, including discussing all the options and implications with their patients before giving the prescription!

joannge profile image
joannge in reply to Met00

Thank you for the information!

Mark_ABH profile image
Mark_ABHPartner in reply to GDCM

Hi GDCM, the risk of osteonecrosis of the jaw is associated more with high doses of denosumab (aka Prolia) taken by cancer patients to prevent/treat skeletal-related events (tumors etc.). You would be taking a lower and less frequent dose for osteoporosis. Here is some guidance from the American Dental Association:

Here are some recommendations for cancer patients taking high doses for how they can manage their dental health to help prevent ONJ:

lawdog profile image
lawdog in reply to Mark_ABH

Thank you! And what is news of the increase of the use of Forteo beyond the current two year life time mention by GDCM in her comment below. She states in the last three months her physician at Mayo told her it is now approved for use beyond the lifetime two years. THIS IS A BIG IF CORRECT. I want more Forteo if possible. The 12 % increase in my bone density in two years was incredible and I have no fractures since taking it. Only had one before starting it and was the ideal candidate for it. Thanks in advance as in several weeks I was scheduled to start Prolia injects, and would much prefer Forteo.

Mark_ABH profile image
Mark_ABHPartner in reply to lawdog

Here is more info on what you are talking about ...

lawdog profile image
lawdog in reply to Mark_ABH

Thanks Mark. Already sent a reply to your private email with this extensive in depth medical information and not everyone can expect to be a candidate to extend Forteo beyond that 2 year period. It doesn’t address the fact situation if there has been. time break or other medication used after the completing the 2 year regiment. Again thank you for such prompt and appropriate information as the materials indicate that the change occurred, I believe, in 2020, after my two years of Forteo was already completed and I started the retention medication of Reclast until now when a decision is made to address one spot on my lower spine needs a change in med to improve. Will be discussing why Forteo is not a possibility rather than switching to Prolia.

Thank you. I am greatly impressed in your rapid response to my question posted in the early morning hours and the quality of it. 👍🏆🥇.

Agree! Thank you.

One year is too soon to have the Forteo effects reported by your doctor. Mine took maybe 14-18 or so months or more as it approaches increasing bone density very differently than anything else on the market. Be patient. It's worth it. Prolia scares me a bit due to one possible side effect. The Reclast annual infusion for three years after Forteo was fine for me; no side effects. This bone density once improved is a lifetime maintenance effort not to lose it, and may mean medication in addition to a healthy diet and appropriate exercise.

What did they do when you had necrosis of the jaw?I have severe periodontal disease and bone loss in my mouth. I’m about to start reclast but I need so many implants and will have to hold off. I’m terrified of necrosis

Of the jaw. Can you calm my fears?

AimeeRU4me - I stopped Fosamax immediately once I was diagnosed with osteonecrosis of the jaw. And told to never take Fosamax, or similar drugs, again. I am on my 2nd year of Forteo with no issues and great bone increase. In discussions with my Mayo Clinic Endocrinologist, it was decided that because I am on HRT (.05 Vivelle Dot) I would continue with that (started for GYN reasons, not related to my Osteoporosis) and forgo Fosamax, or other treatments…. Since it has been recently approved by the FDA to take Forteo an additional time period, I may wait a couple years and go back on Forteo is bone loss occurs once more. (After 15 years, the bone in my jaw has regenerated to near-normal; IO am lucky to have very good teeth with only 3 fillings, no root canals or implants. I was told to be cautious with dental surgery.)

lawdog profile image
lawdog in reply to GDCM

WHAT? Forteo can be now taken for more than the 2 year lifetime limit ? Read your comments about that and that you are in your second year with a Mayo Clinic physician who told you that. How much longer can it be taken and when? I completed my 2 year Forteo with 12% increase in bone density over three years ago and my professor of rheumatology recently never mentioned a newly approved increase in the time one can take Forteo. Thank you in advance.

GDCM profile image
GDCM in reply to lawdog

GDCM profile image
GDCM in reply to GDCM

I have been on Forteo 1.5 years at this point, and will finish my first course with Forteo the end of 2022. I will take a break, using hormone replacement therapy which I am on for other medical reasons, to help stabilize my bone density…and will be followed closely with DEXA scans to check my bone density. At some point, if it declines I will begin Forteo for a 2nd course of treatment for an add’l 2 years of daily injections. I am unaware if there is a specific amount of time I need to wait to begin a 2nd two years of Forteo…my doctor did talk about my taking a “break” between and she will follow me closely.

lawdog profile image
lawdog in reply to GDCM

Hello and that you! I sent one. reply already but don’t see that it posted. So again that you very much and my hopes and wishes for your success go with you❤️😊

I was encouraged to take Prolia right away, since any gains from Forteo only last one year. That surprised me. I refused the Prolia because I was leery of the side effects, one of them potentially being a rash, and I have sensitive skin. Then I was told to take Allendronate, which I did for a few months, but didn't feel great on it. Also, I learned that bsiphonates are not great for our bones over the long haul. Currently I am not taking anything for my bone health except eating dark leafy greens, taking vitamin D and K2, and other things to help naturally. Doing weight-bearing exercises, walking, etc.

Just a thought about you hoping for results of bone density improvement in your one year appoint after starting rheumatologist would not answer that question as he didn't know. I didn't get an answer whether the Forteo provided improvement in one year. It is a slow acting medication and he waited until after the two years to feel comfortable that the 12% improvement was permanent and then we made the decision on the annual Relast infusion as I understand the situation is going to be a lifetime of maintenance for bone density, mostly likely for me, that means no vacations for some type of medication assistance.

At my last appt with Mayo Clinic Endocrinology, my 1 year results on Forteo (after DEXA scan) was excellent. I will finish Forteo treatment (for now) at the end of this year. The doctor and I discussed various options (similar to those discussed in this forum). Because of my sensitivities and allergy history, as well as Fosamax side effect of Osteonecrosis of the jaw…the decision is that we will follow my bone results at the completion of my treatment. Similar to Evista, I am already on HRT patches (estradiol) at 0.05mg and will stay this course vs using Evista. (I continue on HRT for other medical reasons, unrelated to Osteoporosis). We agreed that if my bone density decreases, I will continue another 2 years on Forteo. (My bone density decreases were mostly tied to high dose Prednisone use over a few years, until my Psoriatic Arthritis & Uveitis was controlled by Biological injections / infusions.). The hope is that I can remain somewhat stable since I rarely use Prednisone now. (Crossing fingers!)

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