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Osteoporosis Message Board

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I am new to the group so let me introduce myself. I am a 66 y/0 retired nurse who is finding herself at the mercy of a lot of new drs. for a variety of disorders. I am currently under the care of an internist, GYN, surgeon and urologist. So I am always juggling instructions and making sure all know what the other is doing. I recently had a rather strange experience with Actonel. 5 weeks into Actonel therapy I developed severe left shoulder pain which left my shoulder even to tender to touch for about 24 hrs. I was advised by the GYN's office that this was not uncommon and was probably and isolated incident. Then this past week, 10 weeks into Actonel therapy, I developed a raging fever >103, terrible headache, and bone rattling chills. No nausea or vomiting but I did develop diarrhea over the last couple of days. It felt like the flu but not quite. The fever would subside during the day and then spike again late in the afternoon, accompanied by the chills. The headache was persistent throughout. When I notified the GYN's office, his nurse was not surprised and had him return my call. His reaction was to not take a dose for a couple of weeks and then rechallenge. I told him I would not do that again, Has anyone else experienced this misery? Thanks for being there.
Good gosh, it sounds like the cure is worse than the disease! Have you been diagnosed with osteoporosis or osteopenia? I wouldn't take any of those meds and if you do your research, you won't either! Be very careful when you go to the doctor. It seems all they want to do is give us a pill and then another pill to treat the effects of the first. Hope you're feeling better.
I haven't taken Actonel but I did take Fosamax. I didn't notice any bone pain or flu like symptoms but as the first pill went down and hit my digestive tract it was burning. i took two more 7 day pills and then quit. I'm staying away from bisphosphonates for treatment, there's too many side effects.

At least the bone pain went away. From what I've read here some patients are living with chronic symptoms even after stopping the bisphosphonate medications. I hope the fever/chills goes away also. I'm sure more people will chime in about this medication.

I'm not allowed to mention specific websites. Just do a search within any search engine using ''side effects of bisphosphonates''. Yours were among some of the side effects mentioned, along with a ''sin fin'' of others.

Bisphosphonates are known to stay in one's system years after stopping, especially Fosamax.

Do your research and I hope you will reach a decision. Don't expect the doctors to back you up on stopping Actonel, they probably won't as they're used to prescribing what the drug company reps plug them.

And yes, I'm SURE others will probably add to this thread.


hi Shamrock54 bisphosphonates work by preventing additional bone loss
this makes them look denser (not stronger) on the dexa machine but bisphosphonates also prevent the creation of new bone and one of the many side effects of bisphosphonates is 'osteonecrosis' which literally means bone death since without new bone being made old bone dies
I believe this side effect takes many years of use of bisphosphonates

I think its criminal that doctors continue to prescribe these dangerous drugs inspite of the known side effects and inspite of the fact that the pharmaceutical companies are actually being sued over 'osteonecrosis '
there is a lot of data on the devastating side effects of these dangerous drugs....tell your doctor to get an education
Everyone doesn't get side effects from Actonel. I have been on Actonel for 6 years and havn't had any.
I was diagnosed originally with osteopenia in the 90's when the dexa scans first came to the hospital where I worked. They put me on Fosamax and it caused hives which the pharmacist said was not a s/e listed in the literature. Of course, I was taking it every day. Then I moved here in 2001 and my internist thought I would benefit from Evista which I tolerated without a problem. This year, however, my internist thought I would benefit from a GYN consult d/t fibrocystic breast disease. I won't even go to that cesspool. But the GYN, who was told of my reaction to Fosamax, added the Actenol to the Evista. A new dexa scan revealed further bone density loss in my spine. What a mess. Thanks for your response. The Drs. don't seem to want to discuss the s/e, his suggestion was to lay off for a few weeks then rechallenge. Don't think so.....
Winston, I am glad this is a drug that works for you. Of course not all respond the same way to a medication. I came here to find answers I could not get from my Dr. who thought this old nurse was just over reacting. Thanks for your input.
Ostopenia is not a disease and in my opinion you should not have been medicated. They tried to get me started on bisphosphonates and I refused. I no longer do their DEXA scans or any other routine diagnostic tests. They are a means to further medicate us and keep the pharma profits rolling. I don't think we're any healthier than the previous generation, probably worse, in spite of all the tests and drugs they foist upon us. Of course, that's just my opinion :)
This is such an interesting debate to me. I find myself right at the beginning of being asked to take one of these bisphosphonates. I don't know what to do either. I'm fairly young to have such bad osteoporosis, and afraid that I will make the wrong choice also. I am headed for kyphoplasty for my first vertebral fracture within the next week. My surgeon told me that if my primary care dr. had been more aggressive I would not be in his hands. My endo told me that if my primary care dr. had let me take HRT I would not have a frax. All that's water under the bridge now. So how NOT to make another mistake? I don't know either. I'm with the consensus that thinks these drugs will be taken off the market soon, and what's left to replace them? I also learned some interesting things about the calcium level debate over the last two months as well. Not what you might think! My calcium level is FINE and always has been, yet I've got really bad scores and thin bones. I get kidney stones in a heartbeat if I overdo calcium but it turns out that lack of calcium is really not the cause of my problems. SO you neva know!
I'm interested to hear if anyone has gone on estrogen four years after menopause and had good results (better scores)?
Hello everyone..this is too good a discussion not to jump into. I took actenol a couple of months before deciding that is was not the path i wanted to take. Both men and women with osteo have been lead to believe that the now available drugs are the best treatment for less than perfect bones. For those who have had no problems, i hope that continues and that you see the gains your hoping for. Personally, i think the risk outweigh any benefits they may produce. I'd like to say a few things that i've learned the past few years...this is a big one...just because you have less than perfect bones it doesn't mean that you WILL fracture something in the future, it just means you have a higher risk. Just because you have less than perfect bones it doesn't mean that you can't do all the things you did before, you are the same person you've always been, you just need to be sensible. Just because your dr. wants you take these drugs doesn't mean you have too, you can do your own research and decide what's best for you. Drs. do what the drug companies recommend, which isn't always what's best for the people taking the drugs. Just because these are the only drugs now available it doesn't mean there aren't other options. Some of us are taking strontium citrate. I believe in the future (when/if it gets FDA approval) that it will become the better choice for rebuilding real bone, not casted old bone like the ones do now. I've taken the OTC strontium citrate and have had no side effects other than improved density.

I too am always puzzled when drs. prescribe the drugs for those with osteopenia. Osteopenia is a wake up call to make life changes to prevent the progression into osteoporosis. Taking a drug for a condition that doesn't exist yet seems a bit drastic to me when exercise, supplement and good diet can make improvements. take care...phyllis
Thanks to all of you for your input regarding the actenol. I am finally starting to feel better after 8 days of misery. It is certainly a crap shoot when you start a new drug and have such a colorful history of drug allergies.

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