Hi everyone. I am 49 years old and have severe osteoporosis. About 3 years ago I started breaking vertabrae in my back spontaneously. They called these breaks compression fractures. By the time I realized something was wrong, I had 2 broken bones. As of last July, 2004, I have had 8 spinal surgeries to fuse broken vertabrae in my back, a surgery to fuse my sacral joints (both sides). I've had 2 broken bones in my foot and several broken ribs. I developed osteoporosis because I had a complete hysterectomy at age 23 and was not given any estrogen replacement therapy. Therefore, my bones have the chronological age of a 60-70 year old woman.

BUT...about a year and a half ago my doctors started me on a new drug called Forteo. It is a self-injectible drug taken once a day in the stomach. I can only take the drug for 2 years and I currently have about 5 months to go before I must stop taking it. I have not had a broken bone in over a year now. I want to know if anyone else is using this drug and if it has helped them. Also, has it given them any side effects? I'd also like to share and get support from others who suffer from severe osteoporosis. Thanks so much. Kathy Mac

Hello Kathy Mac :wave:

I think you have been on Forteo longer than anyone else that has posted on this board. I'm so glad to hear that you have had no broken bones for a year. I'm been on Forteo for 10 months. In October 2003, I fractured my right foot, November 2003, fractured left foot and December 2003 I had a complete fracture of my right hip. My osteoporosis was most likely caused by taking Prednisone (steroids) due to my having Lupus, however I was never on a very high dose for an extended period. I had only been on steroids for a year when the fractures happened. I also had no trauma or accidents whatsoever to cause the fractures. I'm 55 and had a hysterectomy at 29 but I did take HRT for years in pill form which I may not have absorbed. The doctors said that I had Primary Ovarian Failure since I was a teenager. I'm still taking HRT but by injection every 2-3 weeks.

I have had no side effects from Forteo injections and have also had no further broken bones. I hope and pray that it works for me. At one time, I was on crutches and was wearing those funky shoes on both feet due to fractures. I don't EVER want to go through that again. It was a very painful experience and the fractured areas still hurt when I overdo walking and exercise. I take Caltrate with Vitamin D 2 times a day also.

Thanks so much for posting to the board. It is so nice to hear that Forteo is helping you.

~Oldbones

Thanks Oldbones! I should have also mentioned that I have been on low dosages of prednisone for 4 years now and I was a heavy smoker for 30 years before quitting 4 years ago. Prednisone is the miracle drug from hell, isn't it? It does amazing things while stripping your body of much needed bone and just generally messing up your immune system. I take the prednisone for my RA and my COPD (very mild lung disease). I still can't stand up straight and need crutches to walk even short distances. My goal this year is to be able to stand up straight. I don't know what is preventing me from being able to do that, but I go to my Pain Management doc in early February and will get more answers. I find the most frustrating problem to be not being able to do any low impact aerobic exercise to strengthen my bones as is recommended. If I walk too much, I tend to get a fracture, but if I don't walk at all, my bones get weaker. What a catch 22, eh? :eek: I sure wish I could turn the clock back and get some better medical advice after my hysterectomy. Take care. Kathy Mac

I am on Forteo and have been for about 4 months. I have had no side effects. I was on fosmax with lots of gastric problems. The Dr changed me to Atinol but it was as bad as fosmax. I have not had a new bone density test yet but am hoping for a good result.

Thanks Oldbones! I should have also mentioned that I have been on low dosages of prednisone for 4 years now and I was a heavy smoker for 30 years before quitting 4 years ago. Prednisone is the miracle drug from hell, isn't it? It does amazing things while stripping your body of much needed bone and just generally messing up your immune system. I take the prednisone for my RA and my COPD (very mild lung disease). I still can't stand up straight and need crutches to walk even short distances. My goal this year is to be able to stand up straight. I don't know what is preventing me from being able to do that, but I go to my Pain Management doc in early February and will get more answers. I find the most frustrating problem to be not being able to do any low impact aerobic exercise to strengthen my bones as is recommended. If I walk too much, I tend to get a fracture, but if I don't walk at all, my bones get weaker. What a catch 22, eh? :eek: I sure wish I could turn the clock back and get some better medical advice after my hysterectomy. Take care. Kathy Mac
Hello again KathyMac.....
I always say I have a love/hate relationship with Prednisone. I feel so much better when I take it. I need to be on a higher dose but I'm trying to grin and bear it at 5 mgs./day. I have only recently been able to start exercising. My doctor recommended a recumbent bike, not the regular stationary bike. I don't put as much pressure on my feet using the recumbent. If I walk much at all, my feet hurt where the breaks were and my hip pain gets worse. Thankfully, I've had no swelling in my feet for the last couple of months. I also have back pain but as far as I know, I've not have any vertebrae fractures. I'm almost afraid to be checked for that! My mother has the dowagers hump and a great aunt was hunched over for as long as I remember. She literally walked with her face looking at the floor. It was really pitiful.

Were your foot fractures caused by any trauma or did they just break.....as mine did? I am limited now to wearing tennis shoes. I don't make much of a fashion statement anymore. :rolleyes:

I hope you can find out why you are unable to stand straight. What kind of doctors are you seeing, other than your PM doctor (if you don't mind me asking)? I can definitely understand the pain. I have to take Lorcet on a continuing basis and sometimes that doesn't help. A lot of my pain stems from Lupus but now I have the leftover pain from fractures. Sometimes it gets really depressing. :(

Hang in there!
~Oldbones

I am on Forteo and have been for about 4 months. I have had no side effects. I was on fosmax with lots of gastric problems. The Dr changed me to Atinol but it was as bad as fosmax. I have not had a new bone density test yet but am hoping for a good result.
Hello old waitress!

Actonel was hard on my stomach also. I had gastric ulcers prior to taking it so I wasn't surprised when I had a lot of stomach problems while taking it. Actonel is suppose to be easier on the esophagus and stomach so my doctor didn't try me on Fosamax at all. I hope the Forteo helps you as much as it has helped me. You probably won't have another bone density test for a while but my guess is that you will show an improvement. Let us know and Good Luck!

~Oldbones

Hi Oldbones...I should clarify. My very first back break came from falling out a 2 story window while leaning out trying to wash the window panes. NEVER try to do that! Hire a professional. That was in 1997. That's when I had my first surgery to fuse vertabrae. It was at that time that the surgeon made mention of the fact that I had very "soft bones". Everything was fine until 2000. That's when the fusion failed because vertabrae below the fusion were breaking due to osteoporosis. That's when everything started breaking at will. My foot fractures and vertabrae fractures and rib fractures were all non-trauma breaks. Just the kind that come from sneezing too hard or rolling over in bed the wrong way. My foot broke after I started a very conservative walking program with my husband. I think we were walking 3 times a week around the block. I had only walked about 3 weeks before I got the compression fracture. It was so discouraging!! The doctors that I see are: A rhuematologist (for my RA and osteoprosis), a spinal surgeon for my spinal fusions, a pain management doc for my pain relief and an orthopedic guy just to keep an eye on the overall integrity of my bones. But, like I said before, I haven't broken a bone in over a year and that is very encouraging to me. My fear is what may happen when I have to stop taking the Forteo in five months. Does anybody know if the positive effects last a lifetime? I'm afraid my continued prednisone use will just rob my body of any new bone I've managed to make while taking the drug. I hope to get an answer from the doctor on February 4th as to why I can't stand up straight or walk without crutches. I'll let you know. All the best! Kathy Mac

Today, January 26, I had a bone scan. It has been known for several years that I have severe osteoporosis. I have "several" fractures in my spine and have difficult times with my hips. So far as I know tho, I have not broken any other bones.

Today, however, my doctor wants to put me on the Forteo. I am anxious to get started because I am REAL tired of the pain. I fractured another vertabrae about three weeks ago. It is a very expensive drug, however, so I am now waiting to see if I can be approved for Lilly's Answers program. I have ordered the application form. If anyone would like to know what the program is I will be glad to explain what I know about it.

It is so nice to come on this forum and find people who are using the Forteo. I am so very sorry that some of you are so young and having these problems. I am 74 years old, I had a complete hysterectomy when I was 49. They would not give me HRT because I had a history of benign breast tumors and they were afraid the harmones might cause trouble in that category. I have taken the calcium and Vitamin D faithfully over the years, and have taken Fosamax for the past 2-3 years off and on.

Good luck to all.

I have been on Forteo for 5 months and will be having a repeat DEXA scan soon. Kathy Mac-after 1 1/2 years of using Forteo how much did your bone density improve? Does anyone know what the alternative for continued treatment is after using Forteo for 2 years? I can't stomach the oral medications and only lasted 3 weeks on Fosamax before being put on Forteo.

Hi everyone. I am 49 years old and have severe osteoporosis. ...about a year and a half ago my doctors started me on a new drug called Forteo. It is a self-injectible drug taken once a day in the stomach. I can only take the drug for 2 years and I currently have about 5 months to go before I must stop taking it. I have not had a broken bone in over a year now. I want to know if anyone else is using this drug and if it has helped them. Also, has it given them any side effects? I'd also like to share and get support from others who suffer from severe osteoporosis. Thanks so much. Kathy Mac
Hi KathyMac!!! I am so delighted you posted! We are all really going to want to pick your brains about your experience being on Forteo this long!!!! Did your doctor order regular blood draws whilst you've been taking Forteo? How often and what were the blood draws for? Have you tried doing the Forteo self-injections in the thigh rather than the abdomen? (The thought of a needle in that tender tummy area just sounds so ..... scarey!) Have you encountered any side effects taking the Forteo? Have you and your doctor discussed what you will do for osteoporosis treatment when you've finished the two years of Forteo?
:wave:

I have been on Forteo for 5 months and will be having a repeat DEXA scan soon. Kathy Mac-after 1 1/2 years of using Forteo how much did your bone density improve? Does anyone know what the alternative for continued treatment is after using Forteo for 2 years? I can't stomach the oral medications and only lasted 3 weeks on Fosamax before being put on Forteo.
:bouncing: I know, I know! :wave:
I haven't even started the Forteo yet but my Endocrinoligist has laid out a plan of 2 years of Forteo and then IV infusions of pamidronate (Aredia) every 3-4 months thereafter. Pamidronate is a bisphosphonate like Actonel and Fosamax but because it is infused rather than an oral medication we are bypassing the digestive tract and avoiding the damage Actonel and Fosamax can do.

Do I get a candy sucker or a gold star??? ;)

.... My goal this year is to be able to stand up straight. I don't know what is preventing me from being able to do that, but I go to my Pain Management doc in early February and will get more answers. ...
:o I just read about something in this forum and already can't remember what post or how to spell it or who posted it - BUT - someone in the forum who is a nurse and caring for her mother w/severe osteoporosis compression fractures, pain and the slumped back posted about a surgical procedure, kytoph... something or other. And I seem to remember it was just a one or two day hospital stay. It has to due with separating the fracture fragments and putting glue in the space which helps to straighten and strengthen the back or at least the fractured area. I'm sure it was in a post at the top of this forum about either the IV infusions for osteoporosis or Forteo subjects.

I suppose my reply is too vague to get a gold star or a cookie, huh?? :dizzy:

Hi fellow Forteo users. This newbie has some questions. Does anyone know how this drug is absorbed and whether it matters if it gets injected into a fatty area or a more muscular area? I know it doesn't go into a vein so I was wondering how it gets where it needs to go. I've read some discussion of the best site for the injection -- I've only used the thigh so far -- but I didn't see anything about the fat vs. muscular question.

My doctor just kind of jabbed it in my left thigh and said that would probably be easiest for me as a righty. He didn't mention what I saw in the literature about holding a fold of skin so you don't go into the muscle. I've followed the literature suggestion and had less after discomfort than I had from his shot, or my own first shot, which I did like his. However, I'm concerned that maybe this isn't the best way to make sure the medicine goes where it's supposed to. I hope this is not a situation of "no pain, no gain" but I'd like to know.

If anyone has the answer, I'd be grateful. Otherwise I may call the customer service line again. The rep who took my first call was helpful. Thanks.

I'm far from the expert on this, but I do think Forteo is suppose to be a subcutaneous injection, which means not in the muscle. Yes, you can absolutely fold up some skin to inject as it is absorbed just under the skin but as I said I am not an expert and I have not started this yet but jabbing it in the leg, especially if you are thin, may really hurt. This is how insulin is injected. Call and make sure with your MD or the drug company but it really should not hurt that bad I would not think (hope) as I am probably going to start Forteo soon!!!

"I have not started this yet but jabbing it in the leg, especially if you are thin, may really hurt. This is how insulin is injected. Call and make sure with your MD or the drug company but it really should not hurt that bad I would not think (hope) as I am probably going to start Forteo soon!!!"

I hope I wasn't frightening. As I posted on another thread, if I can do this, anyone can. My thighs are not that thin (sigh), but lifting the skin should be doable for anyone. Giving the injection is far less frightening than I imagined and we're not talking about great pain here -- just that it was more uncomfortable after he just put it in without lifting the skin than it was with lifting the skin. Good luck if you're going to start. I'm just starting my second week.

I use the belly area to do the injections. My thighs are too far too reach and have to much muscle. I also don't want needle marks on my leg since I wear shorts alot. Sometimes the injections go into the muscle even in my belly area (there's not that much!) but it really hurts and I end up with a bruise. Most of the time it's just not painful although sometimes it bleeds alittle. I switch injection sites from left one day to the right the next day to the middle the next and repeat it. Just in case the medicine doesn't travel around in the system or something. My doctor did explain that as long as all of the medicine goes underneath the skin it should get absorbed. Sometimes it seems like I have to hold the needle in for more than a count to 5 for it all to be released out of the needle though.

"Sometimes it seems like I have to hold the needle in for more than a count to 5 for it all to be released out of the needle though."

Me too. I have had a droplet on the surface of my thigh after I removed the needle twice now. I guess I didn't hold it in long enough. Hopefully, practice will make perfect.

Pretty soon you'll be able to do the injections practically with your eyes closed from routine. I seem to have more extra droplets left over at the beginning of my pen when it's more full. After your 28th day if you have any medicine left in the pen try putting it on "2" and seeing just how much liquid comes out of the pen. It's more medicine than you would imagine.

I'm amazed at how much comes out when you prime the pen on number "1." They certainly allow a lot of surplus medicine that just gets shot in the air.

Pretty soon you'll be able to do the injections practically with your eyes closed from routine. This is good to know!

My husband had his DEXA scan yesterday at his new endocrinologist's office. It's the same brand (GE Lunar) that his previous tests were done on, but a newer model. It shows a worsening of his hip but still within osteopenia range. His spine his worsened in some places and improved in others. His worst T-score is -3.6 at L2, but the L2-L4 score is -3.2 which is a little better than last year. (I'm hoping that his endo will explain these variations at his next appointment.) He'll be doing the 24-hour urine test sometime in the next week.

This Dr. has participated in Forteo studies and is considering putting hubby on it. If he goes on it, I sure hope it'll help stop the deterioration, since I'm not impressed with the Fosamax, which he's been taking for 5 years. I'll be watching these Forteo threads closely to see how everyone else does on it.

Aleta said:
... His spine his worsened in some places and improved in others. His worst T-score is -3.6 at L2, but the L2-L4 score is -3.2 which is a little better than last year. ...
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Aleta, I'm glad to hear your husband's total T-score has improved, however little. Better than no improvement and way better than more loss!!! I was interested to note his L-2 was his worst score tho. For some reason, I had it in my head that the most common area of loss in the lumbar area was the L4-L5 areas. I was surprised to learn that my L2 is also my worst area. I'm sorry to hear his hip area has worsened but it has to be a real relief to learn it is still "just" at the osteopenia, rather than the osteoporosis stage. Good luck and God bless to you both!!!

"I'll be watching these Forteo threads closely to see how everyone else does on it."

My doctor, who, I believe, also participated in the Forteo trials, warned me to be "patient" with Forteo. As I recall the explanation, Forteo builds bone but that bone doesn't mineralize so fast as to show up on the bone density scan -- or something like that. He told me not to have another bone density scan until I had been on Forteo for about 19 months. That's when I would likely see improvement (if I'm going to get improvement, which the doctor hopes and thinks I will).

Yesterday I finished my first week on Forteo. As my husband said, "Only 103 weeks to go." It really isn't a big deal to take it -- it's just hard to be "patient" when you desperately want to believe that this deterioration can be reversed before everything starts to crumble.

I'm with you - I wish I could get better quicker. My first doctor was suggesting DEXA's every 6 months but my new doctor wants it only once a year. It's nice to see if there's progress at regular intervals. Some insurances only pay once a year and some want to know earlier if it's working or not. Aleta145, is your doctor only ordering a DEXA after taking it for 19 months? I wonder why. Supposedly, it can only be taken for 24.

Aleta145, is your doctor only ordering a DEXA after taking it for 19 months? I wonder why. Supposedly, it can only be taken for 24.Taape, I believe you're thinking of KathyMac who started this thread. I'm not a candidate for Forteo because I've had radiation treatment. My husband's endo says he might prescribe it for him, but only for 18 months. After that, I guess it's back to Fosamax.

Hi Aleta145,
Yeah, I did get mixed up sorry.

Got brave tonight and decided to try a Forteo shot in the abdomen. Surprisingly easy. I think it IS better than the thigh. My thighs aren't thin but they're more muscular than my abdomen, where I have a little flab. Never thought I'd like the flab, but now it appears to have redeeming value -- go figure. I found the injection less uncomfortable than in the thigh.

Thanks, SpineWhine. You are right, it is kinda hard to believe, but from outta the mouth of one who's been there and done it .... I will definitely keep that in mind! I've only done the B12 which does seem to do better in the muscle but since Forteo is not supposed to go in the muscle .... anyway, thanks again for sharing.

Thanks, SpineWhine. You are right, it is kinda hard to believe, but from outta the mouth of one who's been there and done it .... I will definitely keep that in mind! I've only done the B12 which does seem to do better in the muscle but since Forteo is not supposed to go in the muscle .... anyway, thanks again for sharing.


Hi Chronie,

I haven't got this whole thing mastered yet, but here's the way I'm perceiving the shots. I barely feel the the initial penetration whether its the thigh or abdomen, but when I'm holding the pen injector for that loooong sloooow count to five, it starts to hurt a little in the thigh. No biggie, but the abdomen is better. I was able to count to seven or so and not really feel anything much. I did the abdomen again tonight. I think I'll stay there for the foreseeable future.

Well, you are right about barely feeling the initial penetration in the thigh so I'll keep all this in mind when and if my Endo finally starts me on the Forteo which she says is her intention. I'm getting both discouraged and impatient. I've been reading all I can find on osteomalacia and the gist seems to be that complete healing with treatment takes place in about 6 months. Well, I've been on 100,000 IU (which is the treatment) for 12 months and still she isn't satisfied and ready to scrip the Forteo. I've read the Forteo literature and know one shouldn't start Forteo if one has osteomalacia but since she didn't Dx my osteomalacia via a bone biopsy .... I'm losing faith!!! There are times I think of just saying to heck with it and going back to my gyn who also suggested Forteo and getting started on it. TRYING to be patient .... sigh. Hard to do when I've had more bone loss this past year according to DEXA.

:confused: :bouncing: :rolleyes: :nono: