Considering Forteo
Hello everyone,
My doctor would like me to start Forteo. I am 62 and have what is considered severe osteoporosis. It has been stable for many years and I have been treating it holistically (fit and exercise) and with Evista. Due to my age and underlying Panhypopituitarism (needing steroids for most my life) , my doctor is very concerned about my bones.
Has anybody used Forteo and how has that been? I am concerned about side effects and he mentioned that the black box warning of osteocarcinoma has been removed, but I still worry about that as well. It’s one of those things that I need to consider the benefits versus the negative side effects.
Thank you all so much for any information you may have.
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I am 70 and have had a compression fracture in my L4- L5. I have been using Forteo for 18 months with no side effects. I also am fit and lift weights routinely. My doctor will do another Dexascan in 5 months. I will update then. Good luck!
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6 Reactions@yvettenie thank you so much! I appreciate your time in responding. I look forward to hearing about your scan. I am going to try Forteo soon. I am worried about the Reclast after because I had such a horrible reaction to Fosomax.
Best to you!
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1 ReactionI have been on Forteo for 16 months. No side effects. I am 70 and started with severe osteoporosis in spine (-3.9), -2.7 in hip. I took 3.5 years of Fosomax first (again, no side effects) with no change. I wish I had started with an anabolic such as Forteo first but didn't even know about them at the time. I had bone markers done on my own (since my rheum does not uses them) as a baseline before I started the Forteo. Two months later (it might have been three, I don't recall off the top of my head) I had them done again. I asked the doctor to order them this time even though they don't use them to make treatment decisions (a lot of doctors don't) so that my insurance (a Medicare Advantage plan) would cover it, although it wasn't very expensive to pay it out of pocket. They agreed. The 2nd test did show it was working for me. I haven't had any since. I'm due for a DEXA next month. Although the black box warning on Forteo has been removed, I think risk of osteosarcoma is still listed as a potential risk. I'm by no means an expert on this, but I believe the risk is primarily for longer term use than the studied 2 years. All the meds have potentially serious side effects. The most serious ones may be rare or rare-ish, but of course that's of small consolation to the unfortunate ones it does happen to. You will have to decide if you think the benefit outweighs the risk. I decided it did.
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7 Reactions.Totally anecdotal— but from posts I have read here and 2 friends, Forteo seems to have fewer , less intense side effects than most of the OP meds…many follow it with Reclast, the one about which I read the most negatives in regard to side effects, and they can be very long lasting…any guidance here ?
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3 ReactionsThanks for your thoughts on this. Very helpful. I am also worried about the reclast side effects.
@cat1203 thank you so much for sharing your experience! It is very helpful. I will ask my Endocrinologist about bone markers as well.
🥰
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1 Reaction@nycmusic Not sure you can call this guidance but I can offer my own decision and why. I haven't started on Reclast yet but intend to when my Forteo is finished. Most people take Prolia or Reclast to chase an anabolic. Both can have very nasty side effects. I don't know if more people suffer bad side effects on one versus the other, but my sense is that most people don't have serious side effects on either. Maybe someone can point to studies that show otherwise. The main determinant for me is that I don't like that you can't just stop Prolia. You have to "wean" off of it by following up with a bisphosphonate like Reclast anyway. Otherwise you're at very high risk of suffering a fracture. It's called the rebound effect. The osteoclasts (bone "killers") are suppressed while you're on Prolia but when you stop they go into overdrive and you end up worse off than before (worse than baseline). You might need to stop because you might have side effects that you can't tolerate even if you don't have the worst ones. Or because your insurance no longer covers Prolia. Or because we have another pandemic like COVID and you can't even get in to see a doctor to administer it. Or or or ... who knows. But when you stop for whatever the reason, you HAVE to take a strong bisphosphonate afterwards. Then what if you can't tolerate the bisphosphonate?You're back to fracture risk. I've been on alendronate (bisphosphonate) before with no issues so I have a pretty high (perhaps misplaced?) confidence level that I would do OK on Reclast. To me going on Reclast for a year after Forteo (assuming I've had good gains and don't have to try another anabolic) is the shortest and safest route to the drug holiday that I hope to take. I'll have to monitor my bones with BTMs and DEXAs and go back on something eventually, most likely. But in the meantime I get a break (ha ha, hopefully not literally). Maybe when I'm 80 or 85 I'll change my mind and take Prolia if I'm going to be on it for the rest of my life and won't have to worry about transitioning off of it (and hope I don't have any intolerable side effects). It just seems to me to be a drug best left to later in life, if at all. I'm sure other people will have different opinions on that.
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2 Reactions@cat1203 thanks for the detailed info…like yourself, a drug for life is not my choice….cancer meds enough already ! My OP not bad now, so my doc said to take a break after successful cancer treatment and do research—all while taking really good supplements (just 2), doing focused PT and exercise , and making a few dietary adjustments…Mayo Connect has been very helpful, especially people like yourself ! Wishing you good health and great bones !
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3 ReactionsI also used Evista. Several compression fractures had me start Forteo in 2016. Did the full course of 24 months. Some initial side effects of tummy upset, leg cramps, slight dizzy after shot, so took it before bed. Great success and have not fractured since. Followed up with one shot of Prolia (did not go well) then Evista for 5 or so year. Now back on Forteo (Teriparatide) for a booster of 18 months and then will go back on Evista. I believe Forteo is one of the better bone building drugs on the market.
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3 ReactionsIsabelle, echoing the other fine answers here, I've been taking Forteo for some time without negative effects.
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