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RISKS OF FORTEO VS. HRT

Gloucester
0 Recommendations

Hi:

I was a nonresponder to Fossamax; that is my bone density after 10 years on Fossamax was worse. Now I must decide what to do. I am 60 years old and have osteopenia and I want to stop the bone loss and if possible get some back. Since I did not do well on Fossamax I assume I would do no better on any other bisphosphonate e.g., Actonel, Boniva, Reclast.
I wanted to get some idea of what other women are doing to halt this disease who may also have not responded to a biophosphonate such as Fossamax.
Thanks Gloucester

Explore topics in this discussion:

Exercise High cholesterol Cancer Surgery Osteopenia Whooping cough Menopause Osteoporosis Progesterone Evista Dizziness Premarin Arthritis Hormone replacement therapy Boniva Prempro Forteo Aspirin Allergies Fractures Fosamax Breast cancer Reclast Actonel Weakness Pain Bone cancer High blood pressure

39 replies

BoneLady

Hi! Gloucester, I am also a 60-year-old female. I have post-menopausal osteoporosis. I don't know if the Fosamax once weekly I took would have improved my BMD scores as it made me so sick I could only stay on it for seven months. I have now taken 680 mg strontium daily in the form of strontium citrate for the past nine months. I have not had a repeat BMD scan, but I can tell you that I feel well again. I also eat well and take calcium/magnesium, a multivitamin with 1000 I.U. Vitamin D, and other supplements. I began a blog to tell others about strontium and to post my own progress. You can visit and comment at http://strontiumforbones.blogspot.com/. I wish you the best of luck.

Gloucester

Thanks, but you need DEXA evidence that things are OK and the supplements are working. I would get a repeat DEXA asap.

Sally48

I was on Fosamax for 14 years it increased my back but not my hips. My new doctor has me on Menostar, as she does not believe in long term Fosamax . Her mother just had all her teeth out because of Fosamax. Menostar is a very low dosage hormone that is just for osteoporosis. I have had no problem and it is a patch you put on once a week. I have been on it for a couple months now. Also am on Vitamin D3 1000mg and am eating a lot more brown rice as it has a lot of magnesium. She suggested reading Better Bones Better Bodies by Susan Brown. Good Luck!

windblown

Hi Gloucester: I wish you luck with your decision...

I just wanted to mention that I finished my 2 years on Forteo and went from established osteoporosis with fractures, to osteopenia, which is considered very good.

Unless something has changed, they usually don't rx Forteo unless you have a score below -2.5 and previous fractures. I know there are some Drs that will rx this if you haven't had a frax, but you do have a low t-score, but I've never heard of someone with osteopenia qualifying for it. Now I could be completely wrong, but when I was approved I had to show that I took another med that didn't work (like you) and I had a t-score of -3.6. Since you didn't respond to Fosamax that may be enough to qualify for Forteo, but I'm not sure, since Forteo is considered a last resort, so to speak. Good Luck and I hope you find something that works well. Below is a link to the Cleveland Clinics pdf with the FDA guidelines on Forteo and how it's prescribed. The pdf also gives the stats on bmd increases and frax prevention along with all the side effects. I think the new guidelines are based on individual clinicians opinions on whether the patients t-score etc warrants the use of this drug, so that could vary from Dr to Dr, based on the patients history.

The paragraph is listed as "Who should get Forteo" on page 594.

http://www.ccjm.org/content/70/7/585.full.pdf+html?sid=9e07cee4-b325-4378-a f70-e4b2c0b570f2

Gloucester

Sally

Thanks for responding. Menostar or something like it is what I am thinking. What is the dosage you are taking and are you taking a progesteron of some type and if so what is the dosage of it. Does you doctor think that dosage will be enough to prevent further bone loss and if she does what tests did she do to make that determination. Or does she have experience with other patients that the dosage in Menostar is enough. Is she planning on giving you a DEXA test in one year to check.

Bottom line is you have the doctor I wish I had. I'm in Southern California. Are you close to that? May I suggest two books: Reversing Osteopenia (I think it is useful even for osteoporosis) by Harris McIlwain and Women's Health a Cleveland Clinic Guide Your Body, Your Hormones Your Choices by Holly Thacker. (Lots of info re HRT)

Gloucester

Gloucester

Hi Windblown:

You have done sooo well on Forteo. That is great. What are you taking to preserve your gains? I hear Fossamax is the drug of choice for it appears everyone but me after taking Forteo. Thanks so much for directing me to the Cleveland Clinic Article. It was so informative. I would not have been able to get 1/10 of that information out of my doctor. Which is why I am trying to find a new DR.
I hear what you are saying about my qualifying for Forteo with my health insurance provider which is another factor in my life that is substandard. At $600 a month that would be pricey if they were not willing to do their part which would only be $3,000 as my insurance on prescriptions has a cap.
I have -1.4 dmd in both my spine and hip (the only thing in my life that is consistent), but I lost 8.7% in my femoral neck (the weakest part of the hip on anyone) last year which was coinicidently was my first year not taking Fossamax and a year in which I lost 8 pounds because of exercise. That's a lot to lose in one year. Most people lose that in a decade. I don't know what went wrong I took calcium and exercised like crazy. I guess it was losing the weight. They say it is better if you weight at least 127 pounds, but that is really too much for me at 5'3" I did not try to lose it it just happened. If I can't take Forteo I am back to HRT.
I think exercise is great but I have serious doubts if it has any effect on bmd.
Again, thanks so much for responding and I have heard there is a yoga practice that focuses on the spine and hip. I can't find the name but you can google yoga and spine and hip. Just don't do any forward bends.
Gloucester

Nancy08

I am 61 I have taken Fasamax for 10 years and my Dexa scan got worse. I took Forteo and the same thing happened. Now I take Strontium Citrate and 1.000mg of Vit D3, calcium and Magnesium. I feel better but did not have any more Dexa scans.Lets se if this will help me. Forteo helps with the pain but the adverse side effects like bone cancer it outweights the benefits, I dont want to risk.

Gloucester

Nancy08

I am shocked. Are you saying you took Forteo for 20 months or thereabouts and your DEXA score was worse? How much worse? Did your doctor have an explanation? With my luck that could be my fate as well.

Gloucester

windblown

Hi Gloucester: Glad you could use the CCJM pdf. I'm now taking Evista, but had to recently stop it because I'm having a procedure done at the hospital. With Evista you have to stop taking it if you will be in bed for an few days, or if you are flying on a plane-due to the blood clot problems listed in the package insert.

windblown

Hi Nancy: I'm curious as well, about your results or lack of with Forteo. How long did you take it? Did you finish the 2 years a while ago and your dxa didn't improve? I didn't get any pain relief, but my scores are great.

Good luck with the SC

Sally48

Gloucester I am going to an all womens office which used to be owned by Christine Northup. She was the first woman doctor who challenged the medical profession. She wrote Womens Bodies Womens Wisdom. They are more holistically inclined, and they are located in Yarmouth, Maine. I used to live in Fl and felt like my endrocrinologist used me for a quinea pig. He had me on Fosamax and Evista at the same time. I think the Doctors just don't have time to do any research. When my nurse practionier suggested going off Fosamax and going on Menostar , I came home did some research as I had been on hormonal therapy with Fosamax for about four years. I had an abnormal mammogram, some erratic heart beats,and also I got dizzy when rising out of bed. I stopped taking the hormones and everything went back to normal, so I was very hesitant to start taking hormones again. I researched Menostar and asked many questions at my next visit. She still felt I should go off Fosamax and go on Menostar. You can read the full disclouseure online. Just google Menostar. After 12 months, the Menostar study was an increase of 2.29 in lumber spine and 0.9 in total hip. On Fosamax I had a decrease in total hip without the hormones, and my spine had increased. I am not taking any progesteron. Menostar is such a low dose as when I was on hormones I was taking 1mg estriodiol,and progesterone. Menostar is only .014mcg daily. Just enough to help increase bone but not enough to be a problem for heart etc. You get 1mg in a week compared to 1mg a day on HRT. My NP also tested my vitamin D3 level and it was 45 which is good but she wanted it higher so she said to take 1000mg of D3. Being you are in southern Ca I think the sun would provide enough, when I was in Fl my D3 level was 66 normal range is 25 to 65. The higher the better as I was just above the highest level. Here in Maine we are at a disadvantage for Vitamin D from the sun. Any digestive problems, I was tested for food allergies, and have been diagnosed with wheat peanut and soybean allergies. My NP used the Alcat test which you can also read about by Googling Alcat. I was having a lot of gas and bloating. I am constantly trying to eat right, exercise, and research my options. Time will tell. Your question on bone scans, I believe that they do them every two years. I will see next year if I don't have any problems on Menostar. I am going to order a weigted vest as I am not 127lbs. You need to be 127lbs to gain bone against gravity. I did get up to 124 but have lost on my new diet. If you have a osteoporosis support group in your area, they probably could be a big help. I hope you can find the right doctor and get all the right medicines for you. I have enjoyed hearing from you. Good luck Sally 48

Gloucester

Sally48

Thanks so much for responding. Yes I know of Dr. Northrup; I have seen her on TV. Very impressed. I would like to try some HRT whether .014mcg is enough for me is the issue. I may have to try the one you did not like the1 mg estrodial + progesterone. I know that 100 mg (I think that's the usual dosage) of prometrium as a progesterone has worked for a friend. I think we need to stay away from hormones made from mares urine (Prempro and Premarin). Certainly Prempro is not the way to go. I just read that 15% to 20 % of women on HRT do not gain bone mass, that was a shocker. But the key is protection from fractures.
Speaking of fractures I may have with all my jump roping and jogging have caused some compression fractures. I have to be tested. Unbelievable!! So it may be too late for me to wear a weighted vest and it may cause me to have more spinal fractures.
But in case I do, tell me where you are buying yours and you should also get a special health report from Harvard Medical School called "Strength and Power Training" which has a great section on weighted vests. Order: Harvard Health Publications. POB 421073 Palm Coast, Fl. 32142-1073; 617- 432-1485.
When would you wear it, all the time??
Gloucester

reversiblecat

Sally 48: I had never heard of a weighted vest. I have never weighed 127 pounds in my life except when I was pregnant. I usually weigh only 100. I have struggled all my life to gain weight and it just doesn't happen. Does this mean it is impossible for me to gain bone mass or that I need to wear 27 pounds around or that I need to exercise with 30 pound weights? Also, what sorts of exercises were you doing that caused you to lose weight? More than lifting weights and walking? I also had a lot of allergies and it was after I learned that I was gluten intolerant that my first bone scan was done about 2 months ago. I'm just doing Strontium & related vitamins and minerals now even tho my osteo is fairly severe.

BikingBarbara

Hi, I'm no expert on the treatment of osteoporosis - far from it :-) My scores continued to decline on Fosamax. I've been on Boniva for about nine months. I get the injection (every 3 mos). I've had excruciating muscle/joint pain in my legs. I'm a big biker (about 180 miles a week when the weather is good) so this has been a big problem for me. I don't plan to stay on the Boniva. My next DEXA is in November. So I'll see what my scores are. My scores are bad but no fractures yet. I have a spine score of almost -4 and hips osteoporosis but not as bad. I saw a top osteoporosis specialist in NYC at the Hosp for Special Surgery a couple of weeks ago. He thought the pain was because my calcium scores are on the very low side. He wants me to try a product called HP Global - apparently they are packets of calcium you can sprinkle in your food and drink. I struggle with swallowing. He also wants me to begin Forteo. I may be having some major surgery at HSS this winter (OATS procedure for a damaged articular cartlidge in my knee). I guess they want me to wait on the Forteo until I've had the surgery. Two ortho physicians here in the DC area did not want to put me on Forteo at age 47. They seemed concerned about the long term effects. They only put their patients who are like 70 and over on it. I really hate being on any of these meds. I worry about the side effects and long term issues. Who knows. I'll probably try the Forteo this spring though and stay on it if my scores get better. I try to also lift weights often, get out and walk as much as possible and continue my biking. Hope this helps a little. Most of the other women who post on this board are much much more knowledgable and articulate than I am :-) so hopefully they'll chime in as well.
Take care.
Barbara
Wash DC
bscottbike at yahoo.com

BikingBarbara

I forgot to mention my experience with HRT. I was on a combi-patch estrogen/progesterone. However, I have high blood pressure and was just diagnosed with high cholesterol. My cardiologist doesn't want me on the patch because of the increased risk of heart diseaes. Of course my osteoporosis docs and ob/gyn want me to stay on it. I've trying to wean myself off of it but it is difficult.
Barbara

DrJamesWebb

Although we want to think these meds increase our bone density, it's very common for the bone density tests to stay the same on Fosamax. On Forteo they should almost always increase unless there is an underlying medical condition causing the bone loss (secondary osteoporosis).

For people on medicine for osteoporosis, the most common cause of continued bone loss is vitamin D deficiency. Unfortunately, if you have vitamin D deficiency (also known as ricketts), taking the 1000 IU vitamin D is not enough to overcome it in a timely manner. For example, patients in our clinic with ricketts will get a 50,000 IU dose for 30 days and recheck the blood level. However, it's important to check the level before and during treatment.

The National Osteoporosis Foundation recently increased their recommended daily intake of Vitamin D to 800-1000 IU for patients 50 and over.

Make sure that your physician checks your vitamin D level. It should be 40 or more. About 90 percent of the patients we see (most who have fractures) have ricketts. Also, if you have continued decrease on your Dexa despite religiously taking your meds, you should have a comprehensive metabolic workup for secondary causes--that is, something else is usually going on and several blood and urine tests are usually needed to find out why.

Always consult your physician. I recommend finding a qualified physician who has an interest in osteoporosis. Preferably they will be involved with the NOF or at least aware of its recommendations. You need the best team on your side to beat this disease.

There is also more information on my blog at www.tentozero.com.

Gloucester

Dr. Webb:

I am looking for a doctor in the Los Angeles area or even anywhere in California who has an interest or, better yet, a practice devoted to osteoporosis. Can you provide any names. Thanks Gloucester

Gloucester

Biking Barbara:

Thanks for all the information. I didn't even realize that there were doctors out there who specialized in osteoporosis. What was the doctor's name in NYC that you saw that suggested Forteo? Is he the one that wants you to stay on hormone replacement therapy while you are taking Forteo? I too am concerned about the risks with Forteo, but I think my DEXA scores underrepresent how bad my bones are. A few years ago, I managed to fracture a rib coughing. Mind you I think I had whooping cough and I was coughing so hard I thought I was coughing my stomach out. I did not think a rib fracture was equivalent to a bone fracture because the ribs seem much weaker to me in anybody. But apparently my doctor views that as a sign that the microarchitecture of my bones is much worse than my DEXA scores indicate. So she is pushing Forteo. I, like you, am worried about taking a drug that has caused at least on osteoscaroma death. I saw an article mentioning this but it also said Eli Lilly I WILL NOT give any details. When I called LILLY to get them to confirm this, it was almost impossible to get them to admit there was even one death (Who knows there may be more). The phone experience at LILLY was too unbelievable and way too scary. I used to work at the SEC and I know all about nondisclosure issues. I'd bet that Lilly does not even mention the death in its 10-K since it has already warned about it on the BLACK BOX. But of course warning that a death may happen and having one occur is NOT the same thing. Do we have to do a freeedom of information act request to find out this information?
That said, I have to give a lot of credit to Lilly for developing a totally different osteo drug rather than joining the herd developing the next me-too biophosphonate. Maybe Lilly just needs to fire whoever is running their answering service. That experience on the phone has however affected the way I view the drug.
Gloucester

BikingBarbara

Hello,
I saw Dr. Lane at the Hospital for Special Surgery in NYC. He is associated with their Orthopedic Surgery Department there. He seems to know what he is talking about. Although his administrative staff seems a bit disorganized. My appt was at 1 pm and I was seen at 4:00 pm. So bring something to read :-)

Gloucester

Biking Barbara:

What is Dr. Lane's first name and why did you think he knew what he was talking about. Does he take health insurance or what was the cost of this visit? Did he run any tests on you?

Gloucester

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