I'm half way through the two year protocol using Forteo daily. Would love to hear others (good or bad) results after finishing treatment.
What has been your experience so far?
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?
ETA--- I read so many are anti medication, which I understand fully. Everyone has to make their own decisions based on their set of circumstances and beliefs. I am only 53, began HRT after a full hysterectomy at age 34. I fully believe the HRT did not protect my bone health hence osteo at such an early age despite years of exercise. I was afraid not to address the osteo with an aggressive treatment due to multiple fractures after fairly light activity.
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.
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?
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.
Hi Alice, I'm actually exactly a year ahead of yourself! I'm on my fiinal month of 2- year Forteo course this very month! After 1 year, I had a Dexa scan which showed an improvement in scores of 11% and I was pleased with that. It will be another 18 months before I'm due another scan but I understand that the greatest improvement happens in the first year.( My spinal t-score went from -4.5 to -4.0 - still quite bad but improving.) I had no fractures but ,because of my really low bone density, my rheumatlolgist put me straight on to Forteo. At the time, other OP doctors in the city preferred Prolia, but not mine. She was unhappy with it's effects on the immune system for me. I tolerated Forteo very well, with mild side-effects but I did get one 'rare' ( listed as an 'inform- your -doctor- if- this happens' side-effect, of weight-loss) which I had to battle with as I'm skinny anyway.. . . Also a 'dragging tiredness' on and off.
I attended my rheumatologist just last week for my end-of-Forteo and 'looking forward' consultation. She said that my risk of fracture had reduced by apx. 50% because of Forteo and then prescribed Actonel for apx. 5 years to consolidate the gains made and for further protection. No mention of 'drug holiday' for me.
So, all in all, I'm happy enough.
Wishing you well, I think we are on the best med. for our condition - either very low bone density (me) or repeated fractures (you). Wishing you the very best. J
PS. I'm 64, and was diagnosed with OP at 62. No symptoms, really acctive, skinny vegetarian with a woeful diet in the past as possiblly my main risk. . .
Alice,
It has been a couple of years since I finished my 2 year protocol of Forteo. I had GREAT results and the only side effect I remember was very mild knee pain. My bones really responded well, even though, yes, we have no idea of the true strength gained. I am right now 54. Was diagnosed at age 30. The only problem is you need to do something to hold the bone you gained. I didn't do anything because I don't like any of the other drugs. Since then I have had some decline again. The dr. recommended Prolia, but I am way to afraid to do that. I've read too many bad results.
Blessings,
Jill
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...
Hi, I'm on my 11th Forsteo pen and yet to have a follow up Dexa to see if there's been improvement in density. So far, the only side effect I've had has been leg pain. I'm 55 with severe osteoporosis. Broken both wrists and had a spinal fracture at T12. I had a kyphoplasty which failed and recently, a 5-level fusion with screws and rods to try to repair the severe kyphosis I developed after it. Osteoporosis sucks! I guess mine resulted from poor calcium intake - I've always detested milk, cheese, butter etc and I'm now paying the price.
Question: does anyone else suffer from bone pain (where there have been no fractures)? I've had bone pain most of my life and the experts say that osteoporosis is a silent disease which doesn't in itself cause pain. Anyone else get this?
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.
Hello Alice
I am 62 and I found out at the age of 44 that I had low bone density (probably result of early menopause)This developed into OP over the next few years. At this stage I was lucky enough to be offered a place on a Forteo study at Guys Hospital. This consisted of 6 months of injections in conjunction with various blood tests and a PET scan - so actually a thorough MOT! I had no side effects. A scan was done prior to starting the study, after 6 months then after a further 6 months, then a year later. The 6 month scan which was done directly after completion of the forteo was disappointing - my numbers had gone down!!! It was explained to me that the action of forteo was to build bone which then has to remineralise or fill up which takes time! - that my following scan would show good results - which indeed it did. My spine numbers went from -2.8 to -2.1........I was put on biphosphonates (fosamax) directly after the end of the forteo course as you must have an anti resorpative to maintain gains. My following scan showed another gain - spinal T score now-1.8. This was 5 years ago and my BMD has dipped a bit since then but not returned to previous score. I chose to come off fosamax last year as I considered 4.5 years long enough and actually wish I had come off it earlier, having taken my health more into my own hands and researched medications. I am now considering taking Evista which is also an anti resorpative but not as strong and, if you do develop any side effects, these will stop as soon as you stop taking the drug. I am also taking the the appropriate and good quality supplements, exercising, doing pilates and receiving occasional acupuncture treatments
As Juno has advised, do consider joining the NOF Inspire Forum - I've been a member for 18 months and have found the information invaluable. As well as people with bone density issues , ther are health care professionals on the forum who have been very helpful with their advice. I started osteogenic training on a biodensity machine alongside power plate 9 months ago which I hope will produce results. (Can't even begin to explain what this is about -if interested you could check out on the NOF Forum) You will find masses of info on the Forum re Forteo, other meds and supplementary treatments. If your GP hasn't done this already, it's really important to find out if there are any possible secondary causes for your OP eg. Parathyroid problems, VitD deficiency.
Sorry to be so long winded - best of luck with your bones
Carol
Thx so much for the NOP Inspire forum. I joined this morning after reading your post but have not had much time to look around yet. Great to finally have people with which to discuss osteo, treatments etc. I appreciate your kind reply.