Forteo?

I have not had a repeat scan since I began the protocol in June 2015. Scheduled for bone density on Aug 24. Just curious if I should expect gain in density after one year of treatment. I do not know anyone personally who has used Forteo. My numbers are relatively low, just over osteopenia to qualify for osteoporosis but I have a wicked history of bone fractures (i.e. Fractured metatarsal walking up steps, stress fracture of tibia during light jogging, fracture tailbone in spin class due to up/down motion). I am afraid to exercise until I see the numbers fall, which I realize is counter productive but due to my history.... what to do?

That's the problem with bone density tests, they can't measure the actual strength of the bone.  I don't take any bone meds, my reading being -2.  The only experience I've had of forteo is my sister-in-law who was prescribed it, but discontinued fairly quickly because of side effects.  She lives thousands of miles away and I don't know her well so I don't know what those side effects were.  I was wondering if your experience has been good so far, everyone being so different.

One (of several) concerns I have about the bisphosphonates is that they can only be taken for a few years, I think the recommendations are actually getting shorter and shorter, too.  And then any possible benefits become reversed.  So what does one do then?

Have you considered some low impact exercise which has also been shown to improve bone density?  These include Nordic walking (this improves strength in upper body) and tai chi (good for balance).  Neither of these should put you at risk for fractures, and because they both improve strength and balance they actually help reduce your risk, even if they aren't also helping to maintain bone density.  There has also been a study done showing that a combination of micronutrients can improve bone density.  Google those words to find the report.  I think all those things would be helpful whether or not you're taking bone meds.

Thank you so much for the suggestion on micronutrients. I am not a bad eater but last blood test showed my magnesium was low so I added that to my calcium and Vit E. I most likely do need to pay better attention to my diet even though I am not overweight.

I am pleased to say I've had zero side effects from the Forteo. (Wonder if it is working, actually). I do sometimes worry about the long term ramifications of taking such a powerful drug but I really didn't feel as if I had much of a choice. It was the lesser of two evils so I'm taking a chance I will not be one of the bad statistics. I do believe, left untreated, I would have progressed to fractured as a result of simple activities of daily living much less light exercise or a fall. I actually didn't include the wrist and elbow fractures that did result from falls bc the orthopedist said the falls were bad enough to break healthy bones (so I don't count those) Thx again for your reply.

I attended a two part bone clinic at my local hospital.  Parts of it were very good, others not so much.  One thing I learned was that only certain types of fractures are usually considered as indicators of risk of future fractures.  Hands, wrists, feet, other small bones were not part of the risk factors.  Even when I mentioned my tibial plateau fracture (caused by bending my knee sideways when I slipped on an ice bank) I was told that wouldn't be considered the type of fracture either.  Maybe like yours because of the circumstances anyone might have been at risk of a break then.  I came away not quite sure what type of fracture they would consider....  I liked the introductory session, which although it didn't tell me much I didn't already know was very good at putting everything in perspective, and defining terminology etc.  The second hour of that day was the physiotherapist and she also was good, although she didn't mention tai chi or Nordic walking until I asked, and she agreed they were good.  The second part was with a dietitian who appeared to be inexperienced and knew nothing about Vitamin K2 (if you don't either, look it up. You need to be getting that too.) nor seemed keen on suggesting non-dairy subsititutes for dietary calcium, although she did say that diet is a better source than supplements.  And a rheumatologist, the only osteoporosis specialist around here who appeared to be somewhat puffed up with her own importance and gave me no answers to my carefully thought out questions, except the point about the tibeal plateu fracture, so I was disappointed in that part of the program.  I'd waited eight months since applying to get in, so nine months since my DXA scan!  I never have been given all my results.  The rheumatologist said I didn't "need" the measurement for my spine.  I thought that was patronizing, and very annoying as it seems the only way I can get access to this report (which I'm legally entitled to) is by paying a fee of $30 and waiting up to a month for it.  Grrrr.

At a bones clinic I went to they said that breaking small bones doesn't ccount towards possible future fracture risk, just because they are small and relatively easily fractured anyway.  I think your spine fracture would be more significant.  I hope you do not get too much pain from that.

I just wrote a long reply which vanished.  I was really just complaining how we aren't given enough education about keeping bones strong throughout our lives.  Anyway I know your circumstances are exceptional.  I hope that otherwise you are in good health?

Juno, I am sending you a virtual {{{{hug}}} right now! Thank you so much for sharing your encouraging news! I'm so happy you saw such good results and I'm very hopeful I will see the same. Interesting that most of the gains come in year 1... I was not aware of that. I really like my Endo but I sometimes leave her office asking myself what did she really tell me....

From what I recall, I too will continue treatment post Forteo, at least for a while. Isn't it interesting so many of us lead healthy lifestyles, exercising and good diets? I did triathlons at age 42 - 44. I just turned 53 and fractured my tailbone just going to a spin class! I am a former smoker (shame) but quit at age 26, when I became pg for the first time. I suppose we play the cards that are dealt the best we can. Hoping to see such positive results like you.

Again, congrats and wishing you continued good health and strong bones!

Thanks Jill! Happy to hear you saw gains also with Forteo. I suppose I've not done my due diligence with regard to follow up treatment but I need to do just that. My doc did mention Prolia as a continued treatment option, at least for a while, after the Forteo. I need to do some research myself. Do you mind me asking your game plan insofar as maintaining the bone density increase? Do you know of a board strictly for osteo? Thx for your reply and cheers to your good results!

Hi Alice, well the 'virtual hug, made it's way accross the Atlantic and woke me up (!). Thanks anyway . . . 

Now re. OP discussion forums (or fora?)  - Apart from this one ie. ''Osteoporosis and Osteopenia',  there is a great one run by the National Osteoporosis Foundation in Canada (NOF) called 'Inspire'. On this, there is one really good discussion group Called 'Member's Forteo Questions'. Here there are apx. 3,500 questions and answers, by ordinary patients and an endocrinologist. You'll get lost of information, advice and reassurance . . . I found it brilliant. 

You have to sign up to join Insire, just like you do for Patient.co.uk. No fees or charges. . . .Well worth the effort and then you'll  have 2 sources of information from each side of the Atlantic. . . . .  That'l keep you busy for a while!!    J

Thx so much for the forum info...

I'm on month 13 of Forteo injections. Happy to say, so far, no side effects I can attribute directly to Forteo. I do know many women have bone pain using other meds so it stands to reason Forteo might cause you the same. I wish you the best... Osteo does suck. I agree.