[gerryann]

After receiving the expected DX of osteoporosis, I was give a script for Actonel...the once a month one. I haven't filled it yet. I started researching it...and boy-oh-boy....it sounds like it comes with some really nasty side effects, so much so that I don't know if I'm gonna fill it. I'm wondering if any of you have taken it...taking it now, and how the side effects have been for you? .....or, are you taking another one of these osteoporosis drugs and are willing to share your experience?

[kaydee]

Actonel was prescribed for me a couple of years ago. I took it for about 3 months and developed severe stomach & low back pain. I stopped taking the drug. We are never sure what is the right thing to do since the side affects can be as damaging. For the most part my philosophy is if I can avoid certain prescriptions I will do so. Good luck with your decision.

[maddie101]

I have been on actonei and fosomax. No problems. With either. Now I take the one time per year reclast by iv infusion. My bone. Mass has Actualy increased slightly.

[LynnDeb]

I cant tolerate either of these meds, have taken the Prolia shots 2x last yr. the bone scan improved slightly

[LynnDeb]

Originally Posted by gerryann

After receiving the expected DX of osteoporosis, I was give a script for Actonel...the once a month one. I haven't filled it yet. I started researching it...and boy-oh-boy....it sounds like it comes with some really nasty side effects, so much so that I don't know if I'm gonna fill it. I'm wondering if any of you have taken it...taking it now, and how the side effects have been for you? .....or, are you taking another one of these osteoporosis drugs and are willing to share your experience?

I had nausea, diarrhea, drank plenty of water and worked standing most of the day, etc and it affected my teeth too

[juneroses]

There's an Osteoporosis Support Group that meets on the 4th Monday of each month at Laurel Manor. Purpose is to educate and share info. Jean Gaull leads.

Jean also teaches "Living with Osteopenia/Osteoporosis" at the Lifelong Learning College. I've seen catalogs at a Regional Rec Center. You can also find it online at:

The Villages Lifelong Learning College enrichment classes for adults.

The course is listed in the "Health and Wellness" section. When I downloaded the catalog, it was on page 31. This is the description:

Begin by becoming informed about this silent disease. Upon
completion of this course you will be able to make an informed
decision when consulting with your doctor. The topics covered
are: Osteoporosis drugs on the market and their side effects; the
role of diet and exercise as an alternative to drugs; proper walking
techniques as a weight bearing exercise; interpretation of the
FRAX and DEXA scan tests; participate in back strengthening
exercises accredited by the Florida Physical Therapy Assoc. to
correct posture and prevent Kyphosis (curvature of the Thoracic
spine). The class will have the opportunity to experience the Low
Intensity Vibration therapy on a Marodyne LIV device. This is a
non-invasive treatment, approved by OSHA and proven in
scientific studies to safely increase bone density.


June

[skyguy79]

Originally Posted by gerryann

After receiving the expected DX of osteoporosis, I was give a script for Actonel...the once a month one. I haven't filled it yet. I started researching it...and boy-oh-boy....it sounds like it comes with some really nasty side effects, so much so that I don't know if I'm gonna fill it. I'm wondering if any of you have taken it...taking it now, and how the side effects have been for you? .....or, are you taking another one of these osteoporosis drugs and are willing to share your experience?

I was Dx'd with osteopenia more than 5 years ago and was originally prescribed Boniva. A little over 3 years ago my doctor replaced the Boniva with Actonel stating it to be a better treatment.

As for side effects, I cannot say that I've had any that I've been able to directly associate with the Actonel. When you're on multiple medications, side effects can be hard to recognize and associate with any individual meds you're taking.

When I read the words I've highlighted in your post, I get the feeling that you're not viewing the side effects as being a possibility, but rather an inevitability. If my feeling is correct, then I would have to disagree with that view. While it's important to realize that all medications (prescription or otherwise) have side effects, it's also important to realize that this doesn't mean that you will definitely have side effects. Side effects listed or given on instructions are generally determined by statistical data on past experiences with the meds, and they're provided for us so we will know what we should be looking for.

It's also important to know that doctors make determinations (or at least they should) on meds they prescribe as to whether the risks out weigh the benefit. If they do outweigh the benefits, then the doctor should not be prescribing it. Before deciding whether or not to take the med, I would discuss my concerns with my doctor asking their view on the risks vs. the benefit first.

[mfp509]

I was on Actonel yrs ago and stopped it on my own and I'm glad I did. The last two bone density scans I had still show osteopenia and two separate Dr's just said keep taking calcium and vitamin D3 - no hurry to prescribe Fosamax or anything else.
My sister had been prescribed Fosamax or Actonel when her scan showed osteopenia. A year ago when she went to Boston for back surgery they took her right off of it - said that after taking it for a while it seems to reverse itself and starts breaking down the bone. They found osteoporosis in her back, so apparently it didn't prevent osteoporosis for her.
This week, a friend of mine went to the dentist with an infected tooth (root canal not possible because tooth is fractured). When they found out she was on Fosamax, they would not extract it until she is off the Fosamax for 3 months. Apparently there is something with the healing or some infection that can set in and it is not reverseable so they don't want to take the risk. So she is on an antibiotic and painkillers and still pretty uncomfortable.
I'm sure it is not only Fosamax but other similar meds including Actonel. I'm staying away from it - calcium and vitamin D3 for me. Do some research.

[Bonnevie]

would definitely discuss with doctor the risk to benefit ratio of taking the drug, i.e. how severe is your condition. If I could get away with not taking it, I would.

[gerryann]

I appreciate all of the info. It's helping me make a decision. Drs office was no help whatsoever. Sure is difficult finding healthcare where they care at all.

[NotGolfer]

I don't take this drug though I do have the dxt of osteopenia. As an aside to that...doctor's don't have a full knowledge of medications. What they know is what the drug suppliers tell them. I would do more homework on this...we ALL need to be our own advocates and not take everything we're told at face value with our health-care issues.

[Bonnevie]

also, so much of medicine now is driven by algorithms. these are basically charts that say when a lab result is thus, treatment should be such. it doesn't allow for individual variables. But, say your doctor didn't prescribe it for you and you fell and broke a hip. Theoretically he could be liable for not following the general course of treatment. That is medicine today. It's good you are researching this.

[cbv0211]

I was on Fosamax for about 3 months. One day I could hardly get up off of the couch because of the muscle pain I was experiencing. I stopped taking the drug and will not take a replacement drug. Go to the Osteoporosis support group at Laurel Manor -- they are a wealth of information and support.

[gerryann]

Originally Posted by cbv0211

I was on Fosamax for about 3 months. One day I could hardly get up off of the couch because of the muscle pain I was experiencing. I stopped taking the drug and will not take a replacement drug. Go to the Osteoporosis support group at Laurel Manor -- they are a wealth of information and support.

Thanks, I am hoping to get to the next support group. It seems like the next step for me to take.

[YouNeverKnow]

Originally Posted by LynnDeb

I cant tolerate either of these meds, have taken the Prolia shots 2x last yr. the bone scan improved slightly

Has anyone else taken Prolia with positive results?
I was on Actenol for 9 years and went on a 3 year drug holiday from it. My most recent bone scan showed a 6 percent decline in bone density so the doctor wants me to go on Prolia. Like everyone else I'm worried about side effects but don't want my bone density to continue to decline!