Has anyone used risedronate (Actonel) for bone loss?

dizzybuff38

Has anyone used risedronate (Actonel) for bone loss?

dizzybuff38

I have just rcvd my qtrly copy of the English Crohn's Assocn newsletter with a very interesting article on bone loss by Dr. Hash Kriel, a research fellow at the Bristol Royal Infirmary. His research was dedicated to Crohn's patients who have used steroids and suffered bone loss, some for as little as 8 weeks. I was on steroids for 30 yrs, now on weekly injections of methotrexate and doing well, except for the bone problems.

My interest is twofold - obviously the long term effects on my bones of steroids, but particularly being on Arimidex for 4 years, when my bone density has significantly decreased - I had two spontaneous fractures in both feet in 2007, just by standing up, and am worried about a hip fracture as I have osteoarthritis in both hips, hands and feet, and dx osteopenic. I am currently taking alendronic acid orally, weekly and twice daily Calcichew/Vit.D.

My bc surgeon was concerned at my 5 yrly review in Jan 2008 about continuing with Arimidex and further bone loss/fractures, but wants me to continue due to lymph node spread. He referred me to a Professor of Endocrinology, who was supposed to have a specific interest in the side effects of Arimidex and bone loss, but he has now referred me to an Oncologist. (I was, unbelievably, discharged by my Onc after finishing FEC chemo and 25 rads in2004 - he has since retired and I don't have an Onc.) I was stage and grade 2, 2 cm IDC with associated intermediate DCIS, 3/18+ lymph nodes, WLE and total axillary resection. ER+, HER2-, PR not done.

The results of this research report treatment with risedronate for Crohn's/steroid patients has been very encouraging and I am wondering if any US bc patients with bone density loss have taken this particular bisphosphonate. I saw my gasto last week as I have 2 strictures in my small intestine and he is referring me to a gastro Oncologist.  None of my doctors seem to talk to each other, and with concurrent diseases, often feel as if I am falling between the cracks.

I would really appreciate any insight/advice/experience as I don't know anywhere else to post my questions.

Thank you for listening.

Liz, Cornwall, England.

TenderIsOurMight

Hi Liz,



I took Actonel for osteopenia. I was switched to it by a gastroenterologist as it is felt to be easier going on the stomach lining. I had no problems with it: just the usual no laying down for a period of time etc...My stomach did seem to be less acidic, reflux prone with it than with the former bisphosphonate. During the time I was on Actonel, I was also on Arimidex, and while I continued to have osteopenia, I did not progress to frank osteoporosis.



So it sounds somewhat similar to your situation baring your long history of the steroids. I wish there was a medicine that would help you regain your bone, yet currently I know of none. Keep your eyes open for Denosumab, which is not a bisphosphonate by action, but may be helping bone maintenance problems in breast cancer patients if it passes phase III trials currently under way. My only other thought would be to ask if you might be a candidate for intermittent IV Zometa therapy. It is a strong bisphosphonate and since you have the long steroid use, you might ask your new oncologist if he/she would consider its use to ensure maximal bone stability, at least trying it for a year or so, backed up too with urine studies to ensure no excessive bone protein by products are present suggesting bone loss. Many oncologists/bone specialists obtain such urine studies, and if the bone proteins are there, ask the patient to come in for the IV Zometa (4 mg IV per infusion I believe).



It does seem you are being passed around the doctor group. Hopefully you are being passed up the ladder, to she or he deemed most knowledgeable for your specific needs. Certainly the gastrooncologist sounds reasonable to help guide you with the intestinal strictures, the Crohn's disease and the need for a bisphosphonate. And you do need a great oncologist for your breast history, to counsel you regarding extended use of an AI, such as Arimidex which many oncologists are beginning to turn to also in patient's with positive node ER+ breast cancer history. So good for you for keeping these appointments. As I recall it's a bit of a trek in from your home, by boat and land and back. I hope they offer you timely appointments to allow you to rest along the way and back.



Should you wish to read about bone loss discussion by hormone savvy oncologist, you might search under Peter E. Goss, at Mass General. I believe he discusses his view that it's ok to keep on with the AI, and use a bisphosphonate, that most don't progress to frank osteoporosis, and when the AI is stopped, bone loss becomes less. Also Ian Smith, MD, is an oncologist who comments on this.



Please post anytime you wish. We're happy to share with you.



Take care,

Tender

Pharmmom

Yes I use Actonel.  I used to use Fosamax but it bothered my stomach to much.  FYI anyone who uses Fosamax it now is available in a generic.

mrsb

I have used Actonel for the past 2 years and have been taking Femara for almost 5 years. My bone desnity has shown no futher loss and indeed some improvemnt in the 2nd year of Actonel. I did have a poblems on dosage but  am doing well on once a day versus once a week. Mrs B