Osteoporosis Community

I am in the same boat- I'm too scared to take anything too, especially b/c I have TMJ.and stomach problems.

Well, I too have stomach problems and have IBS. Strange that I got it after being on Fosamax for a few months. I took Fosamax for over a year and then Boniva but was scared to keep taking it after the scary things about these. Been a year since I stopped thse. Still have the IBS

Really bad osteoporosis as defined how? Low T-score, hip and/or vertebral fracture, other non-traumatic fracture? All of these?

The only osteo medication that actually grows new bone is Forteo. It's made from the parathyroid hormone and is given to people with "really bad osteoporosis." Those who are frail and have a history of fractures.

It's given as a daily injection for two years, then treatment is with a bisphosphanate to strengthen the new bone.

Remember too that no medicine will work if you don't get adequate calcium (1200 mg/day) and Vit D (1000 IU/day.)

I just started prolia in Dec.2011.I'm due for another injection in June. I'm not sure I want to do it .Since the first shot in Dec. my bones ache all the time. I know that's a side affect. I do take calcium and vitamin D. I took actonel for 2yrs.it affected my jaws.

My doctor wanted me to take the Forteo injections but I didn't want to be bothered injecting myself every day, so after reading all the literature on available options I decided I would take the Prolia. I went as far as travelling to the city, filling out the paper work and listen to the nurse-practitioner explain all the side effects that could occur. When she was finished I refused the treatment and walked out. According to my endocrinologist I do have osteoporosis ( I don't know how severe because I don't understand the numbers) and she wants me to take something, but the side effects of all these drugs are terrible. What is one to do? I will discuss it again when I see her in September. I took Fosamax fr about five years and apparently it didn't do much to help.

Hi, I was recently told I have severe osteo. -2.7 on my spine and a -3.1 on my hip. I am small, white, premenopausal(13years),on and off prednisone, autoimmune disease that gives me nutrional deficiencies,and I smoked. I fractured a rib. Thats what sent me in to the doctor. Both of my Drs. want me on fosamax. Almost filled prescription too. So glad I looked into it a little further. I really wanted a live professional person to talk to and validate that these biophosamates are bad.. I mean, I want to trust my Drs . They tell me its perfectly safe. These incidents are rare. Well, I needed to see my dentist , and told him I was diagnosed and I might be starting fosamax. He very bluntly told me not to. He compared bones to tree branches. They are alive and growing. Biophosamates will build dense but dead bone. Thats why they're brittle. He used the word petrified. He said I can build new bones. We all do every day. I need lots of calcium, vitamin D, K, magnesium, potassium, phosphorous, protein,vit.C,zinc,iron,copper, boron,isoflavones,and fluoride to help build bones. Also excercise. He said to run if I can. The more pounding the better. I can't run. Every time I do I end up limping for 6-8 wks. My ankles can't take it right now. But I walk. I'm lifting weights, and hopefully in 2 yrs. or so the DEXA will show my bone mass has increased. I think it'll be a slow process. I'll have to be careful. It felt so good to have someone professional tell me what my gut was telling me was true. Now I'm kinda wanting a new prim. care and rheumatologist! Are they just pushing these drugs?

No, they're not pushing these drugs. The United States practices EBM (Evidence Based Medicine). The drugs have been proven to reduce your risk of fractures. Many people take that to mean that they will either grow new bone or increase your bone density. Sometimes that happens, but the purpose is to stabilize the bone you have. The bisphonates work by slowing down the process by which your body absorbs old bone. As you age the balance between bone building and bone reabsorption gets off balance. The body will absorb more bone than it can build. The drugs like Fosamax/Boniva/Actonel/Reclast give the body a chance to naturally build your bone.

I have to say, unless your dentist is an expert in osteoporosis as our medical director is, his statements are quite frightening.

With scores as low as yours, you definitely DO NOT want to run. The pounding on your spine, while helpful to a person with normal bone density, will cause the tiny struts within the vertebrae to fracture. You do not feel this. When the last one within a vertebra breaks, you suffer a compression fracture. You will feel that and there's no do-over once this happens.

I also would be careful about lifting weights. If they're too heavy or you don't keep your spine straight, you could fracture doing this too.

Being premenopausal and having these scores means that when you go through menopause, you can lose up to 20% of what you now have once your body stops making estrogen. There is no way whatsoever that you can recoup this loss or even improve your present scores without the help of medication.

Isoflavones mimic estrogen. They have been proven to help with bone density BUT only for 2-3 years. Studies have shown that after a few years, the effect on bones stops.

You talk about side effects. Have you ever read the side effects of Tylenol? Prednisone? Statins? Chemo? And yet, people can't live or function without some of these.

I can tell you without qualification that if you have a vertebral fracture, it will change your life and there won't be a thing you can do about it. Compression fractures cause stooped posture which in turn compresses internal organs causing pain. Once you fracture you're twice as likely to fracture again. Your balance is affected and you're prone to more falls causing more fractures. Your clothes don't fit and your sleep is affected because of the pain. Some of our patients who've had several compression fractures sleep in recliners. And if you're sexually active, well, that usually goes by the wayside.

My mother and brother are on Reclast. I can tell you that if I needed an osteo medication, I would run to the nearest pharmacy and fill that prescription. I'm very thankful that we live in a time when these meds are available. There's risk with everything we put into our bodies. Ask someone who's allergic to peanuts - and yet they're natural.

You're way too young to have your life be permanently altered because of a fear of a proven drug. I hope for your sake, that you reconsider your decision.

Garden of Life has a product call Bone Strength. I is raw calcium and another pill with other important minerals for bone strength. They guarantee it will increase bone density and if it does not will pay your cost for both the before and after scans. I took actonel for a year and started asking questions after I started hearing about femur fracture with those drugs. No one would discuss it with me. All I kept hearing was 'it's safe, it's safe'. I stopped taking it and follow a safer course of action for myself.

The Garden of Life product contains strontium. In the U.S. the software used in DXA testing measures only calcium in the body. Taking strontium will artificially elevate your test numbers, making your bones look stronger than they are. That's why the company can promise your bone density will increase with their product or your money back.

It also is advertised for people experiencing bone loss as a natural part of aging. (bone loss is not necessarily a natural part of aging) They are very careful in not saying anything about people already diagnosed with osteoporosis.

As for raw calcium? What? Calcium is a mineral. Calcium is calcium. There is no good, bad or better. It's simply a matter of what your body best tolerates.

As I've said many many times before, once your T-scores reach a certain on their own or combined with other risk factors present, there is NO natural way to rebuild bone. You have to have a proven prescription drug and weigh the benefits against the risks. As you do with all courses of treatment.

Thanks for that information. I went to the site and I see that there are a lot of products that say Bone Strength. Which one are you referring to exactly? Could you post the links? I'm in need of this stuff now my doctor wants me to go on Actonel and I'm terrified of the stuff.

Has anyone else had any side effects from taking Prolia?

I had an injection of Prolia which is supposed to rebuild the bone. It lasts for 6 months and has a half life of 4 weeks, meaning that every 4 weeks, any side effects are cut in half. The side effects are only slightly higher in those taking Prolia, but they can be severe, causing hospitalization according to the medical literature.

I have heard horror stories from 2 other women on another site. All of their complaints are known to be side effects of taking Prolia. The one was hospitalized one week later and had to call 911 with chest pains, urination, and rash. The rash spread all over her body. Then she had pain in her lower back, bladder, and had urinary infection which is still bothering her more than a month later.

Since my injection 2.5 weeks ago, I have extreme skin irritation, especially to my face which is a problem since I have extreme sleep apnea and need the CPAP mask clamped onto my face all night. Plus I have jaw pain which is getting worse and worse which may be from another side effect which can occur "spontaneously" called jaw necrosis, meaning the jaw bone deteriorating.

Still another woman said that she has experienced bone, joint and muscle pain, vertigo, sores in my mouth, weakness and dead feeling in my legs, exhaustion, and itching all over her body.

Please let us know if you or someone you know has been on this medication.

I'm only familiar with a couple of our patients who take Prolia. It is not given cavalierly. Our medical director (who is an osteoporosis expert and on many osteoporosis boards) has not even given it to any of her rheumatology patients. She states unequivocally that it is not to be given unless all other osteo meds have been tried without success.

With the patients who are on it - I've not heard any complaints. That doesn't mean there are any and we only see them every year or so, but people love to complain, so I'm pretty confident they would've found a way to let us know.

I'm sorry you're having these problems and hope they resolve soon or you find another med that will strengthen your bones and that you can more easily tolerate.

Yes, my doctor's office said that they weren't getting complaints. I read the side effects in those taking Prolia vs. the placebo. The side effects were only slightly higher in those taking the Prolia.

But if you're having the side effects, it can be severe. The extensive instructions say that side effects can be severe enough to need hospitalization as I illustrated above. In addition to my face feeling like it's on fire, sores on the inside and outside of my mouth, my skin is now getting big red welts that have lasted at least a week after wearing two different medical patches. These are imperative to my medical health. Also the slightest nick on my skin has created a dark red ring around it, My forearms are beet red.

The jaw pain, first time ever, scares me the most. The instructions say that the jaw necrosis can occur "spontaneously".

Why was I given Prolia? I was taken off Fosamax after vomiting it up and having voice and swallowing problems afterwards. I have acid reflux. I took it for the past 7 years. My nephrologist said no to Reclast due to my kidney failure and had only approved the lowest dose of Fosamax. Haven't looked into Forteo--maybe not an option with my kidney failure. Don't know why that one wasn't suggested by my endocrinologist. I am on estrogen patches, but since my Prolia 3 weeks ago, (maybe no connection), I suddenly have an extremely dry vagina that hurts to sit up or down. So no estrogen on board right now to help prevent the bone loss. And I've had a major stroke, but not from blood clots. Estrogen increases the risk of strokes by 33%.

At 60 years old, I have very bad osteoporosis that the doctors think could break my back. That can lead to hospitalization, lasting disability, pain and also death. So I'm aware of the risks from osteoporosis, but this Prolia scares me and I'm in major discomfort with it.

Don't really know what to do. Any suggestions that anyone has are appreciated.

Not sure why your nephrologist wouldn't let you do Reclast, and yet, you were on Fosamax for year. They're both bisphosphonates.

Talk to him about the Forteo. It's a different type drug. My uncle took it and he only had one kidney - having had cancer in the other. Sometimes the risks of complications from the osteoporosis (like you have) are worse than the possible side effects of a medication. We don't know the outcome of a certain medication on our system until we take it, but we do know the outcome of certain diseased if we don't do something.

I wish you the best possible outcome from whatever you do.