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I am 32 and diagnosed with severe osteoprosis. my endo. just recommended forteo. i have seen that it is not fda approved for premenoposal women and am a bit freaked out. has anyone taken this drug and have any advice? plus i am not sure i am done having children, has anyone gone on to have children after being on this med?
thanks
Exercise Cancer Arthritis Boniva Forteo Fractures Pregnancy Fosamax Breast cancer Reclast Osteopenia Actonel Menopause Pain Osteoporosis
Hi Megan
My understanding is that forteo is not prescribed for premenopausal women. What are your t-scores? Have they done any tests to determine why you have osteoporosis? It is important to treat the cause and not just the symptoms. I am 34 and have osteopenia borderline osteoporosis due to lack of oestrogen. At present I am trying to put on some weight to see if that will help my oestrogen levels. If not I will have to go on the pill. I am not done with having children either and have been diagnosed after having my first child. My understanding is not to take bisphosphates either as they stay in the bones for long periods of time. I am taking Calcitriol (Vit D3 - prescription) to try and build up the bones. I am also watching my diet (cut out caffeine, sugar, processed foods and increased calcium rich foods) and doing exercise. Perhaps you should get a second opinion to make sure of what the correct treatment is for you. I am sorry to hear about your diagnosis. Do all the research you can and know that you are not alone. There are a number of us young mums who have posted journals on this site and I found them very helpful.
Take Care
Koo
Megan-- I'm 28 and have postpartum osteoporosis; my T and Z-scores in June were -4.3, which is pretty severe. I was diagnosed after having my second child, who was born in January. Probably I had this disease after my first child, but didn't know it, which is why it's now so severe after having two children.
I'm taking Forteo right now, and I do believe that it's helping. My rheumatologist actually prescribed it because I want to have more children some day, and it doesn't stay in your bones for years like bisphosphonates do. It's not approved for premenopausal women with osteoporosis, but as far as I can tell, nothing is. There is really very little information out there about postpartum and premenopausal osteoporosis. There are a lot of discussions on this site, though. I know there is a pretty lengthy one about Forteo, that was started by a woman with postmenopausal osteo. I think it's called "Please share your experiences with Forteo." My story is in there, plus a lot of other helpful stories about women's experiences with side effects, effect on DEXA results, etc. I don't know if anyone has shared that they've had a child after taking Forteo, but I know that I plan to, and others do, too. My rheumatologist has told me that this should be safe.
I hope you find this helpful, and that you start to feel better soon. We're all here to support you!
--Alisa
thanks so much for your reply. my t-scores are pretty low, -2.7 hip and -4.3 spine. i also have multiple fractures that i am dealing with now (not easy with a 2 year old and a 5 month old) i believe that my osteo was brought on by my pregnacies and nursing. i have a family history, but since my numbers are so bad it is believed hat something else is playing a role as well. i have seen on this site that some women;s numbers increased w/o doing anything the further away they got from pregnancy and nursing so i am hopeful about that (i just weaned my son a few weeks ago) but i am also nervous about waiting and not doing anything b/c i keep fracturing since my bone are so bad. i have changed my diet and and taking lots of calcium and vit D as well
Hi. I am the person who started the discussion "please share your experiences with forteo". I was interested in reading what you had to say. I was in the same circumstances as you. I got osteoporosis during the pregnancy with my second child at the age of 31. I had 2 compression fractures. My spine was -3.8 and my hips were somewhat better. I have not gone through menopause, yet. I am sure I must be close since I will be 50 in January. I took fosamax for a year. It really didn't improve my bone density. I tried Actonel and it immediately bothered my stomach. So all in all, I have only been on Miacalcin all these years. Supposedly our bodies make this so it's pretty safe. I have held my doctors off with their recommendations of forteo or reclast. My doctor was pushing forteo long before it came out. Reclast wasn't approved for osteoporosis when he started recommending it. I have to admit I'm very reluctant to take forteo and I refuse to take reclast. I know I can't put it off any longer. I wish we knew what happens ten years from now. I will be starting forteo soon and will share my experience as other people have to me. It does help when it comes time to make a decision.
Linda and Megan-- Thanks for adding to this discussion; it seems our stories are all very similar... which is interesting, given that so many of the doctors I've seen say that postpartum osteoporosis is so rare. It really makes me believe that this disease is not really rare at all; doctors just aren't testing for it.
Anyway, I'm not a drug rep or anything, but I have to say that my experience with Forteo so far has been very positive. The side effects are minimal (I have flashes of bone pain sometimes in varied places, that last about a minute and then go away, and that's about it. I think some people said it made them nauseated or tired, too, but taking it at night right before bed helps with that). And I really think it has made my back stronger, and is helping to heal the four very painful fractures that I have. I lost my job due to this illness, and now I'm able to work again and take care of my kids, ages three and eleven months. Because the Forteo is making my bones stronger, I'm able to take less narcotic pain medicine, and I have a better quality of life. And I think that overall compared to bisphosphonates, Forteo is much safer, especially if you want to have more children in the future. There has been a lot of information lately about bisphosphonates, and whether the side effects make the drug worth taking, and even if they really work (many studies show that they don't actually increase bone density, despite what Sally Field says). I'm glad that my doctor was knowledgeable about that; I know some other women in this situation have not been so lucky. Some women have said that their doctors are pushing them to take bisphosphonates, even though they want to have more children in the future.
Of course, we can't know what will happen ten years down the road. But for me, Forteo was worth the possible risk, given that we know it doesn't stay in our bones for more than a few hours with each injection. And the true test will come when I have my next DEXA in February. I'll be sure to share my results with this community.
And of course just because this has worked for me doesn't mean that it will work for someone else. But I hope my experience has been helpful in your making the right decisions for yourselves.
Good luck to both of you.
--Alisa
Is there anyone that has taken Forteo long enough to know that it has increased there bone Density?
My Dr. told me it cost $825.00 a month or more!
He said he didn't think my Ins. would pay for it.
I'm 66 yrs, have medcare, and Blue cross ppo..
My Husband said he didn't care what it cost if that is what I needed!
I know I should call my ins. co. but I'm still on the fence about taking the daily shot, since Boniva made me so sick, in so much pain for two weeks.
I started natural menapause at 38 yrs old. which I have heard is young.
I did take hormones for 10 yrs, cause the hot flashes where so bad.
I'm now hearing on the news, that taking hormones again are causing breast cancer!
Whats a Women to do -:)
Take Care,
April
Hi April and all: I saw your posts and thought I'd mention, again, how well I did on Forteo.
To give you a little background, I went through early meno at 30 and found out about the osteo a couple of years later from a bone biopsy.
I'm now 54, and my scores from 5 years ago, taking Actonel and Forteo went from -3.6 (spine with frax's) to normal bmd (spine) and my hip is in the osteopenia range just above the cut off from normal to osteopenia.
When I had my first scan they only checked my spine, so I don't have an original hip score to compare to just the spine since I had a QCT and not a DXA.
I did really well on Forteo with no side effects except greatly improved scores.
To the poster who mentioned miacalcin, I just wanted to mention that Forteo is a genetically engineered form of our bodies *own* parathyroid hormone, so that's pretty darn close to what we produce in our bodies everyday to control calcium and phosphate production and levels, so I consider it close to natural.
I know of other pre-meno women who took Forteo and did really well, and it's true it only stays in your body for 4-6 hours post dose.
If anyone has trouble with their insurance, don't forget you can try to get a *drug exception* or *tier change* on the price. I know several people with MC/Blue Cross ppo and other insurances, who were able to get the drug covered, or the price lowered. You just have to be persistent with the paper work and have a Dr that is willing to sign and send it in. the process isn't that difficult to complete. If you get turned down on the first try--Try Again... The squeaky well gets the grease, so they say.
Boniva is nothing like Forteo as far as side effects go, Forteo is not a bisphosphonate and is the only drug that actually builds new bone where the others just slow bone loss and hopefully maintain what you have. I too had a *bit* of trouble with Actonel, but nothing with Forteo and the shot is so simple you'll barely feel it. The needle is literally the size of an eyelash and since it's a sub q injection it only goes into the skin by 3/16th of an inch which is so small.
Good luck to all of you taking this and those considering it!!! I hope you all do as well as I did.
Sorry but I forgot something. If any of you haven't read the Cleveland Clinics pdf on Forteo you should really do so, it explains everything you could possibly want to know.
To find it click on my screen name which takes you to my home page. On the right look for my Favorite Links and the Cleveland Clinic pdf on Forteo and download it.
Good luck again...
Hi Windblown,
Thank you for the Information on Forteo.
Although I'm a little confused!
Did you take Actonel and Forteo at the same time?
I'm sorry but I still have to look at your homepage and read about Forteo.
I took a fall last night, cause my husband came in and left his Ugg boots laying around, and I trip over them grrrr.. My knee is swollen, my wrist's seem to be ok now, but I have arthritis in my neck , and I messed that up , so being on the computer is killing my neck.
I need to go to P.T. and I will be fine.
Thanks again, I'll check it out in acouple of days,
April
Hi April: Are you ok? I hope you didn't hurt yourself too bad.
I took Actonel for 17 months and only improved by 2/10th of a point so I went on Forteo after I stopped Actonel. I saw all my improvement after starting Forteo.
Tell your hubby to put his shoes away :0) and good luck with PT.
After forteo, you know these doctors will want to put us on bisphosphonates to keep us from losing the benefits we might have achieved from forteo. It does sound as if a lot of people have had bad reactions to these drugs. Hopefully something new will come out. I thought I heard there was something in the works.
Thanks for all the responses. it is good to know other young women have taken forteo with good results. for those of yoou who have been living with this for a while, what is your quality of life? i am feeling pretty down about the fact that i am 32 with 2 young kids that i can't even take care of. i am hoping that once my fractures heal i will be able to resume my normal life, just trying to be a bit more careful...and making sure to take my calcuim and excersise. am i nieve in thinking this?
I am glad I found this site. I am now 31 and found out I had Osteoporosis when I was 28. I started Forteo right after I turned 29 so I am just about finished with my 2 years. I had a Bone Density Scan at age 28 and 30. My scores improved on my spine and on one of my hips. The score on my other hip went down. I have also been on prescription Vitamin D (50,000 IU) since I was 28. I have felt out of place going to my rheumatologist's office and being the only one under the age of 60. My husband are looking at trying to conceive sometime after May. My rheumatologist put me on Forteo since I am still in my child bearing years and wants to start me on a bisphosphonate after I have children. He talked like Forteo was my only option until after I have children. I did have an advantage with payment. My insurance drug plan had a $50 copay each refill.
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