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Recently dx'd and nervous about meds
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karoda; posted:
I'm 50 and just dx'd with osteoperosis. Rt. femoral neck is -2.7 and L4 is -2.8. The other tested bones were between -1.7 and -2.3. I've been to many sites to research the meds for this, and I am worried about taking them because of the possible adverse reactions. I have osteoarthritis in 50% of the spine + 4 bone spurs and a double fusion in the neck in addition to a total knee replacement. I live with pain 24/7 because I have major adverse reactions to most pain meds (usually severe vomiting/stomach pain). I have had ulcers in the past and now have heartburn/reflux fairly often.
My osteoperosis isn't caused by menopause (I just had a hysterectomy a few weeks ago and started HRT the next day). I've been taking Vit D for 1.5 yrs due to deficiency.
I've read several of the posts here and really appreciate the medical experts taking their time to answer the questions.
Are there any percentages given for the number of patients who do react to these drugs?
Because I react to so many meds, will I be more likely to react to bisphosphonates?
I've read some real horror stories about people's reactions, and am terrified that taking this will incapacitate me. On the other hand, teaching in an elementary school puts me at risk of being knocked down by a student, so I know I need to do whatever I can to strengthen my bones asap.
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phototaker responded:
I just wanted to let you and other posters know that it might take a little while to get an answer. Weekends are pretty slow. I hope you find the answers you need. I just had my 3rd bone density test taken, and am waiting to hear my results. I was close to osteoporosis. I did a lot of reading on the different medicines, but you have a lot of other issues going on. Be careful, because of your gerd symptoms with Fosamax type medicines. I'll let the experts at this talk to you more. I suggest you start reading as much material as you can get to make your own decisions on what to do, also.

There are also some people who are trying strontium. It's not FDA regulated yet, I don't think. I wanted to wait a year to see the progress that is being made on people who take it, any side effects, etc.

Good luck! I taught 2nd grade for many years, so I know the "fear" you might have of a youngster running into you.
 
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karoda replied to phototaker's response:
Thank you phototaker. I've been doing a lot of research and spoken with the 3 additional family members also recently dx'd. I've reached the conclusion that I'd rather try natural methods (calcium vit D exercise diet) to cure this. As I weigh the benefits vs the risks, I find that the risk of being incapacitated with side effects from bisphosphonates far outweighs the risk of breaking a bone while I work on rebuilding my bones naturally. I don't say this lightly - my father died because of collapsed vertibre in his T-spine. I have no problem with modern medicine either. I just know that I am "extremely chemically sensitive" (according to the nurse who administered a chemical stress test a few years ago).
 
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phototaker replied to karoda's response:
This is such a tough decision to make. I had to really fight with my doctor before he retired about me taking Fosamax. I knew for "me", it wasn't the right choice. I'm also very sensitive to medicines and have a flap that doesn't close right on my Esophagus, allowing food or liquids to come up at times. Right now I have no problem with that, especially since I lost 38 lbs. after my diabetes diagnosis. I'm not on medicine for that either, choosing diet and exercise instead.

I may be making the wrong choice about my bones. It's scary not knowing. I reread my first post to you, and I meant to say that I'm planning to have my 3rd bone density test after my trip coming up soon. My doctor has agreed to that, so I'm making an appt. tomorrow for when I get back. I'm praying that I made the right choice of upping my weight bearing exercise, (dancing, walking, and Zumba),and using more Vitamin D and calcium. I also do swim aerobics for my balance, important for us,too, as not to fall. I don't do any twisty, bending type things, either.

Being that your dad had problems with his bones must weigh on your mind, also. I'm still waiting to hear the results of strontium, a healthier choice of a supplement to take, IF the testing on it shows promise. I didn't want to take it unless it had been tested for a while.

Good luck! I'm looking at training with weights next.
 
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bonebabe replied to karoda's response:
Hi Karoda,

While you're right to take the calcium and Vitamin D, they will not rebuild your bone density. When you reach a certain point, the only proven method is pharmacological intervention.

I understand and appreciate your reluctance because of your sensitivity. However, your numbers are very low and you have a strong family history in a first degree relative. Your HRT will help, but you need to talk to your doctor.

The medical community agrees that at this point, there is no "natural" proven way to rebuild bone and that the risks of fracture far far outweigh any side effects from the drugs.

What I'm hearing is that you're nervous about gastric side effects. Lots of people have that and with your history, you probably would be one of them. There is a drug called Reclast that is given once a year by a 15 minute IV infusion. It's getting marvelous results and now is quite frequently being given by orthopedics during surgery to repair an osteoporotic hip fracture. You may want to investigate that.

Speaking of hip fractures, the statistics are that one in two women over the age of 50 will have an osteoporotic fracture during her lifetime. Of those, half will die from complications of the fracture within a year of fracturing. At 50, you're young enough to rebound from a fracture, but it could still impact your life significantly. You saw what your father went through.
I can't think of any risk of any osteo med currently available that would be worse than that.

Go to the National Osteoporosis Foundation website, (www.nof.org ) and look at the patient information on medications as well as their official statements about the side effects/risks of those medications.

On a personal note, and this is only my own opinion, if I were in your situation, I would run to get my prescription filled, probably do the Reclast. Which, by the way, comes under your medical insurance, not drug, because it's given in a clinical setting.

Best of luck to you in whatever decision you make.
 
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karoda replied to bonebabe's response:
Thank you Bonebabe for your reply. The stomach issues are definitely a concern, but actually not the biggest one. I'm also really worried about severe bone/joint pain and development of bone spurs (onj fits in there too since I have TMJ). Right now, I'm able to function and work with only a few limitations - and I want that to continue for many more years. From what I've read about these drugs, my chances of being disabled by them is extremely high. This is opposed to about a 23% higher chance of breaking a bone than someone without op (my calculation based on what I've read). I guess I'm also thinking that -2.7 isn't that far into the osteoperosis range (here I'm comparing to my younger sister who's at -4) and that maybe I can turn it around.
I do know this - I have actively searched for positive info on these drugs and for every positive patient comment I read, there are between 20 and 50 strong negatives.
 
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bonebabe replied to karoda's response:
Nobody can make a decision for you. If you really really don't want to do a prescriptio med, you'll find justification not to.

You need to very carefully read information about medications based on proven reliable sites. Much info is given on the web that is tainted or slanted. Also you need to consider people will write of their own horror stories and worst case scenarios, much like hearing more bad news on TV than good.

As for only having -2.7 as opposed to -4, don't think a particular number is a turning point. More people with osteopenia fracture than do people with osteoporosis. That's a fact. A -2.5 diagnosis of osteoporosi is only a randomly picked number for measurement purposes. Being at -2.7 and not far removed from -2.5 doesn't give you any more safety than that of your sister. Being female and having a strong family history of osteoporosis are two things you can't change. You can only look at them as a heads up for your future.

At 50, you have a lot going for you and a long time ahead of you, and I know sometimes it doesn't seem real or serious. I'm not here to convince you of anything one way or the other. You'll do what you want. I'm trying to have you avoid a "V8" moment where you slap your head and say "I wish I'd..."

Just as another piece of information for you, nobody in our osteoporosis center in the hospital where I work has ever heard of bone spurs caused by osteo meds.

I think you need to discard opinions and look at these facts: You're female, You have a strong strong family history, You are postmenopausal, and you will age. All huge risk factors that are not going to change. This is what you need to consider when making your decision. I wish you well, with whatever you decide.
 
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vickielynnh replied to bonebabe's response:
I was on fosomax, evista, for years, bones have really not improved a whole lot, now I'm trying BHRT, Bioidentical Hormone Replacement Therapy! I'm hoping to get results from this. Also, I jog, some lift weights, walk, I really think the key is weigh bearing exercise! Good luck out there to all who suffer from this disease. By the way, really don't trust the drug companies behind these so called drugs for your bones. Doesn't sound like they do much more than doing it the natural way.
 
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runningmom10 responded:
I, like you am 50. I was on Actonel for 5-8 years and it did nothing for me. I am a runner and experienced several stress fractures before being referred to an Endocrynologist. My specialist put me on Forteo injections (daily). I have been doing this for 2 weeks now and any side effects that I encountered are beginning to diminish. This is a hormone injection that has a proven record of building bone. You may want to ask your doctor about this treatment. I am counting on its success! And -- I am still running.
 
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chia6000 replied to runningmom10's response:
Karoda,
I know EXACTLY how you feel...After doing Actonel and having bad G.I effects, gave up and did not take anything for a few years. Then I had some microfractures occur and I knew it was time to seriously undig my head out of the sand.. :) Analyzed scrutinized, worried about all the medication options I had and now I am doing "Forteo". So I start that tomorrow. Seemed to me that it was a pretty effective way to combat bone loss without dealing with stomach issues to boot. I am expecting muscle soreness, but since I understand what will cause it (fluctuating blood calcium levels), it makes me less scared. I hope you make the right decision for you and are happy with it.
 
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runningmom10 replied to chia6000's response:
Chia6000,
I also quit actonel -- the latest reports really scared me. I also was very nervous about the injections and the side effects (dizziness, muscle aches, joint pain, etc.). But I can honestly say after 2 weeks, that I have not noticed very much, other than the fact that I sleep better at night after taking it. My knees hurt a little while running during the first week, but that has stopped. I also am not racing like I used to. I have put that on hold until I see results. I am just running for my health and well being and not getting crazy with distance.
Good luck to you on beginning the Forteo. I did alot of research on it, and my doctor said it was the only thing left for me to do. Give it a chance and let me know how you are doing.
 
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bonebabe replied to runningmom10's response:
Glad you're tolerating the Forteo well. It truly is a miraculous drug. It is the only osteo med out there that will grow new bone. When you complete the treatment you'll go on a bisphosphonate to strengthen the new bone.

One other thing your doctor may or may not have mentioned to you - running. If your spine density is low, the running will pound the vertebrae and can cause the tiny honeycomb bone within the vertebrae to fracture. You won't feel this until the last one within the casing fractures. Then your bones collapse against each other. This is a compression fracture.

Also runners typically sweat a lot. Calcium is excreted in the sweat. We've only seen one runner in the nearly 4000 patients we see each year who had normal bone density - and his spine was so filled with arthritis a diagnosis wasn't possible. Just some more info for you to consider when making choices about your bone health.
 
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phototaker replied to bonebabe's response:
Bonebabe...I sweat a lot in any exercise I'm doing, especially when I do an hour of zumba five times a week. I'm so surprised to read what you said, that calcium is excreted in sweat. Does that mean I have to consume more calcium or take a higher dose of calcium?
 
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bonebabe replied to phototaker's response:
We see it more in runners than any other population. But, if you're sweating for a solid hour 5 nights a week, you could be losing calcium through the sweat. Taking a higher dose of calcium that's greater than 500 mg won't be absorbed. If you don't have a history of kidney stones, ask your doctor if it would be OK to take and extra calcium supplement at bedtime on the days that you zumba.
 
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marybones replied to phototaker's response:
this is the first time I have ever joined in any discussion group.
I discovered I had osteoporosis a year and a half ago. My scores were so bad my doctor gave me an ammonia shot so I wouldn't cough too hard. I was put on generic Fosamax because I have no health insurance and it's very inexpensive. I want to change because of all the negative reports I have heard about this med, but my choices are very limited. My latest test shows I have gotten alittle worse, and if I am approved for a prescription drug program I am going to switch to Boniva. It's tough making these life altering decisions but I don't think the natural way will do the trick for me. I really wish there was a natural alternative..... Luck and health to all...


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