I appreciate what I've learned from reading messages here over the last few days, including the ones about not letting a diagnosis of "osteo-whatever" (-penia, -porosis) dominate your life. My question is about refusing a Rx that I'm certain (from what I read here and elsewhere) I do not want to take, namely Actonel for "mild osteopenia." I know some of you are not "spineless" when it comes to dealing with this kind of situation, even if labeled "non-compliant." Do you think it's reasonable to suggest bio-identical estrogen/progesterone as an alternative to Actonel (for a newly-menopausal woman with a T score of -1.3)? Has anyone chosen that route in a similar situation? From what I've read, bio-identical HRT seems a better way to treat bone loss under these circumstances than bisphosphonate drugs. My endocrinologist says that since I do not want to take synthetic HRT I should not want to take bio-identical HRT either since "both are hormones." Am I missing something? I don't want this issue to become a "bone of contention" with my "endo." How should I reply to "just give Actonel a try"?
Hi deanana...if i had scores like yours and had "mild osteopenia" i wouldn't take actenol or any of the osteo drugs. I'd be one happy camper and work to keep it that way. Maybe you should try the diet, weight bearing exercise/weigth training and calcium supplements for a while and then see how you next scan comes out. Try to rebuild your bone density naturally. Do some research and read about your options and what can be done to stay off the meds. My advice to all newly dx is to read the book The Myth of Ostoeporosis by Gillian Sanson..it will really help you out with good insights and info.
Be honest with your dr..tell him how you feel and that you're not ready or willing to take meds yet. I''m surprised he even suggetsed them with scores you got. Most dr. want to "do something" rather than take the wait and see path. If he gives you trouble about your decison, look for a new endo, you want a dr. who will support and advise you in whatever decison you make. Are you seeing the endo for other health concerns or just the mild osteopenia? take care...phyllis
I wish my doctor had told me I had osteopenia because it probably would have been a good wake-up call for me to increase my calcium and D, and make myself take more walks. I didn't see the report back then and the dr didn't mention anything. Two years later, I asked about having a base line test for osteroporosis and the dr said no I didn't need one so to wait 5 years after menopause. He tried to push the hormones but I refused because my mom had breast cancer. I also had heard that taking hormones only would delay the symptoms of hot flashes which I really suffer from. He gave me samples but I wouldn't take them. I then went to my ob-gyn and asked him for a baseline test for osteroporosis and he easily agreed. I definitely now have osteroporosis. I was put on Actonel and for two full months dealt with some headaches, bone pain and a cough The third month, I ended up in ER with chills and severe pain. My dr wanted to switch me to Boniva, but no way after reading up on Bonvia being capable of having the same side effects. . Yet, I know people who have no problem other than headaches with Actonel and Boniva. I am now trying Fortical nasal spray. I am doing some walking, did modified yoga for a month ( I am waiting for back surgery) and am taking calcium, vitamin D and magnesium 3 times a day. I won't allow a doctor to intimidate me into taking that stuff ever. I dont know what the solution is, but for me actonal wasn't it. You are already ahead of the "game" now as you are addressing what to do now before your condition turns into osteroporosis. Vitamins, exercise and limiting soft drinks would be my advice.
Thanks, Phyllis & Mel. Phyllis, you asked if I'm seeing the endo for other health concerns -- I was recently diagnosed with hypothyroidism, so that was the reason for my first visit. Frankly I was surprised when the bone issue came up -- I've taken calcium and done weight-bearing aerobic exercise for over a decade, so I didn't expect any bone issues at this early stage in menopause (but evidently hypothyroidism contributes to bone loss). I'm happy with this endo's thyroid treatment (feeling better), so I would probably not change doctors. In addition to the short-term side effects such as the ones you mention, I now see that some experts anticipate extreme long-term effects as well. So, thanks to the advice on this board (I'll get the Myth book) and other online info, I will definitely not take Actonel. I think short-term bio-identical HRT is the way to go. If anyone has experience with that approach or is dealing with hypothyroidism in addition to bone loss, I'd appreciate your input.
Hi Deanana, It sounds like you've been doing all the right things to help and protect your bones. You're right, being hypothyroid and well as hyperthyroid (which i was, i have Graves disease, treated with RAI 4 years ago) are factors in bone density loss. In fact, i believe thats where my bone loss came from, i am now on total thyroid replacement and am feeling fine. If i can be of help with thyroid questions, please ask. There are a few of us here wtih both thyroid and osteo who could help you. Now that you are being treated for hypothyroid the loss from that should slow down and like you said..you're feeling better. Your endo will make sure your not getting to much hormone to prevent more loss.
Bone loss is a part of getting older and its during menopause that women tend to lose some density. I've never taken HRT so i'm not familiar with the bio identical form you mentioned. If you don't mind my asking, how old are you? Since you have mild osteopenia if you step up your exercise program to include free weights as well as the aerobics that should help. It's the pull of the muscle against the bone that makes it stronger. Are you getting your calcium mainly from mostly supplements or in combination with a calcium rich diet?
The main thing to remember is to keep it in perspective..you know you have the early stages, so you can take measures to repair whats already been done and do what you can to prevent it in the future. Actually, your ahead of the game..most people don't find out till much later. don't let the dx take over your life..do what you can to help it, but live your life as you always have. also, remember that bone strenght and bone density are two differnt things...your exercising has probably given you good strong bones even tho some of the density is gone. Stay in touch here..there are lots of very helpful people to talk to. take care..phyllis
Phyllis, thanks so much for your info! It's good to know some of you have background in the thyroid issues too -- I didn't recall seeing anyone mention thyroid in the earlier posts I read, but then of course there were only so many I could read during my few days of "lurking"! To answer your question, I'm 54, about 2 years into menopause. So I figure I have about 3 years left during the rapid-bone-loss phase to reduce the rate of loss via HRT (hopefully bio-identical). I just came across some additional material about the way bisphosphonates work and possible long-term problems -- these drugs sound even scarier than I thought at first! Although I've decided against Actonel, I need to read up to be able to justify my decision (including the mostly-good info about natural hormone replacement). I'm not sure if I addressed all your points (using this "quick reply" I can't see your message -- not sure yet about the details of how this board functions), but again, thanks for the input! I wish you the best in your quest to beat "osteo"!
I made the mistake of taking Actonel for osteopenia and very sorry I did. The 6th pill cause a long list of side effects. Bone pain was horrible and not only that and other things but Actonel caused Plantar Fasciitis in both feet and sitting bone areas. Thank goodness the sitting bone areas did not stay but my feet still have problems and it has been a little over 2 years. Can't wear anything other than good supporting sport shoes. Do wear dress shoes for church but must change as soon as I get home to good supporting shoes.
Not only do I have the problem with my feet but my hands have inflammation in all fingers and thumbs. I am sure it is a result of Actonel. One symptom I had at the time was waking up at night with fingers stiff like claws and had a hard time concentrating hard enough to make fingers move again.
I too am hypothyroid.
Recently my doctor mentioned taking Forteo and I flat out refused. He wanted to know my height and I asked "why". Knew he was going to try and convince me to take Forteo. He soon let up and realized I was stubborn and meant it when I said I would not take anything. After the side effects I suffered, it will be a long, long time before I will give in to take another med for osteopenia.
Hi Misty: Good for you!! I wouldn't trust a dr that wanted to give anyone with osteopenia Forteo. Forteo, whether you like it or not is only for low osteoporosis scores. Forteo is the last option for meds, and certainly not meant or recommended for osteopenia. I was told that if my score increased to the osteopenia range, I couldn't take Forteo.
Everyone needs to advocate for themselves, so good for you. If you get a chance, and haven't read it already, read the link I posted on side effects from bisphosphonates at:
I have a -2.5.. full-fledged osteoporosis at only 54. I first tried Actonel, and I, too, had such horrible joint pain after just the first pill that I could hardly get out of bed for 2 days. My doctor said first that it must be the flu, and wasn't until I got angry with him telling him I wasn't a hypochondriac that he listened. Then I tried Boniva. It was no problem... for about 6 months. Then my heartstarted racing when I was just sitting, and when I was sleeping. I wore a heart monitor to appease the doc, and it went 44 to 147 at 4 a.m. He hasn't suggested anything else, but today a research nurse suggested I take Forteo.. which is why I began looking at this site. It looks like Forteo has it's own major problems. Glad you are out there