Anyone taking Actonel for osteopenia?

crazy4carrots

Anyone taking Actonel for osteopenia?

crazy4carrots

Just had my checkup with the onc and, while everything else is A-OK, my bone density showed a slight increase in osteopenia from a year ago.  (Yes, I'm on Femara!).

She's recommending Actonel, but I told her I wanted to do a bit more research first, so I'm asking the best research subjects I can find -- YOU!

Are any of you on it, and for how long, and have you had any SE's?  And, most importantly, has it prevented further osteopenia, or osteoporosis?

Thanks in advance for your responses.

Linda

Sig

Hi Linda,

I am also taking actonel since last november due to osteopenia. So far I cannot say that it is giving me any SE, as I do not have any news SE's since starting actonel. I too take femara with limited SE's. I will find out on my next BMD Scan if actonel has prevented further osteopenia which is next november as I did not get a BMD Scan since I started actonel. Would love to heard also from women who already had a scan post actonel treatment.

Sig

crazy4carrots

Thanks for your response Sig.  Glad to hear no se's.  Are you taking it once a week?  That's the dose my onc suggested.

My older sister has been on fosamax for a few years and she says she's not having any noticeable se's either, and her bones are in good shape.

Sig

yes I am taking the once-a-week pill (35 mg). I hope it will increase my bone density or at least stable.

cbm

Hi, Linda; I have been taking Actonel monthly since 2006 or 2007 for osteopenia--I have a borderline hip that qualified me.  I was taking it on two sequential days each month and they discontinued that dose.  I switched to one day a month, last month.

I've never had any side effects that I know of. My osteopenia appears to be the same as it was in 2007 based on my bone density test last month.

cbm

Keenie

Hi,

I've been Actonel for 18 months and now take it monthly for two days in a row.  It does make me feel a bit yucky, but it's certainly manageable.  My last bone density scan in Feb 09 showed that my bones are now those of a 70 year old - an improvement of 10 years in one year of meds.  :-)

Hope you find the same success.

Christine 

crazy4carrots

Thanks for all your replies!  I've taken it for 3 weeks and so far, no s/e's.  However, I have to put a post-it note on the med cabinet mirror to remind me (that is, if I remember the post-it note!!!).  My short-term memory has gone right down the tubes since chemo last year, and currently femara.

GramE

I am 63.  took Evista daily and Actonel once a week because both Mom (age 96) and sis (age 57) have osteoporosis.   DEXA scans showed osteopenia, but never got worse.   Last DEXA was May 2009 and still no change or "decline".

I stopped both when chemo began last June, 2008.  Onco said is you take either, you must stop one month before any invasive procedure, surgery, biopsy, dental work.  So I quit altogether.  

Tx w/herceptin was done July 2009 and  I asked about going back on pills or Once a year infusion of Zometa.   She thought Zometa was perfect for me, cause it is also used for bone mets, although Ido not have.   I had the infusion last week and no side effects.  

This eliminates having to go off pills if need surgery or such and forgetting to take it and the cost of co pay and forgetting to refill.    

faisan

I started taking Actonel because when I started Arimidex, I broke a shoulder and 2 months later, a wrist. I was sent for a bone density test and diagnosed with osteopenia. I have taken Actonel now for about 6 years. A recent bone density test showed that my lower back was notably better, and my hip was very slightly worse. I have never noticed any side effects from the Actonel.

lago

My onc is putting me on Zometa once I start Arimidex. I have slight osteopenia. My mom has osteoporosis, I'm white, small boned and used to smoke. I do exercise but as you can see I still have osteopenia at age 49.

She said the other positive thing about Zometa is studies show that it can reduce bone mets. I'm sure in time Actonel as well as other bisphosphonates will prove to do the same.

crazy4carrots

My last dexa scan showed improvement in one area and slight deterioration in another.  So GP switched me to Fosavance (40mg plus 5600IU VItamin D3) once a week.

However......I've been reading a bit about osteopenia and how the "measurements" were decided upon.  Turns out they came about thanks to pharma companies wanting to sell a new product to "prevent osteoporosis" and needed a panel of docs to decide on some guideline measurements.  Before we knew it, every woman over the age of 50 was advised to have bone density tested and if levels fell even slightly below these "guidelines" then -- poof -- drugs like actonel were prescribed.  Even IF there was no history or other mitigating factors!

I have a gut feeling that exercise daily, Vitamin D and a very healthy diet is the safer way to go.  I'm not really comfortable taking Fosavance -- not enough long-term studies have been done.

Just my thoughts on this issue!

lago

"I have a gut feeling that exercise daily, Vitamin D and a very healthy diet is the safer way to go."

That didn't work for me. I was doing all that but again I'm like the poster gal to get it with my family history, size, race etc. I have read others just like me did the right things but it wasn't enough. I'm not saying it won't work for you just consider all the other factors that might put you in a high risk group… making exercise, diet, vit D, calcuim not enough to keep the problem at bay.

You can always try the natural route. If it doesn't work then consider the meds.

crazy4carrots

Well, I did say it was my gut feeling!  I'll keep taking the Fosavance until my next dexa scan in May, and we'll see then if things have improved and then decide.  I guess I'm just leery of drug companies these days.  But lago, in your case with a history of osteo etc., it makes good sense to take every precaution.  I've seen so many patients with severe osteoporosis and I feel so badly for them.  It's painful and terribly debilitating, not to mention disastrous when a broken hip results in pneumonia.

Sig

I started actonel in Nov 08 - Feb 2010 and was also doing daily weight bearing exercise (jogging, weight lifting), calcium, vitamin d and I still loss 5.6% of bone density, I was devastated as I was doing everything I could to improve my bone density and it did not work for me. So my doctor switched me to fosavance (insurance did not pay for it, so they approved alendronate with vitamin D 1000 IU separated, was told it is the same thing). Will find out on my next bone density next march if it did made a difference, I still do daily exercise. My doctor wants me to be on the drug for one year prior to do another bone density. I have no family history of osteosporosis and I am on femara since nov 2007

sig