Reclast?

Options
conniehar
conniehar Member Posts: 954
edited June 2016 in Bone Health and Bone Loss

I have been dx'd with osteopenia. I have had 2 scans and my bones showed thinning.  I am on Tamoxifen but only have 3 months left - then I will be switched to Arimidex.  I am 44.   Endo is suggesting Reclast.   I was looking for some ladies with some experience with this drug.  I started googling around the internet and am freaked out by all the horror stories - people dying, etc.  Any info would be helpful!  Thanks!

· Share on FacebookShare on Twitter
«134567

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2012

    I also have a dx of osteopenia.  I had been taking Fosamax for many, many years but started to have issues with side effects, mainly reflux.  My gastroenterologist suggested that I look into changing meds.  Both my endocrinologist and my oncologist suggested Reclast infusions, once yearly.  I've had two infusions now, a year apart, and each one was pretty much a nonevent, with absolutely no side effects whatsoever.  I can't confirm results yet since I'm not scheduled for my two-year Dexa scan until November, but I'm hopeful that this med will have improved my stats.  I don't know if everyone reacts in the same way to this medication, but I can definitely confirm that it was a piece of cake for me.  The hardest thing about it was having the infusion delivered at the cancer center.  It felt very strange being back there again (I'm six years out from active treatment now).  On the plus side, though, it was lovely getting to visit with the nurses again at the center.  They've always been wonderful!  Hope your experience is as easy as mine was if you elect to try Reclast!

    · Share on FacebookShare on Twitter
  • blackjack
    blackjack Member Posts: 1,010
    edited August 2012

    HI Connie,

    How are you and the kids?. I am back in school and having a hell of a start ....new everything aaarrggg. Any way I just had the infusion 2 weeks ago at my onc's office. I had to drink lots of fluid the day before and the day of infusion. They infused me over 45 min and then gave me a bolus of fluid for 10 min after the infusion.  I took Tylenol after I was done to help with the side affects. The next couple of days I did have bone pain but took pain med every 4 hr so I was ok. You still need to take calcium / vit D for two weeks daily afterwards to help the Reclast. My osteoporosis is bad , plus I had a fx rib in May so I needed it. Now I have a stress fx in my leg from running. I had that before the infusion. So I hope the Reclast will help the fx. 

    If you want to chat about it pm me. You will do fine...just need to drink lots of water before and after.

    Sad that summer is almost over and fall will be here. Boating season will be over in no time.

    Take care

    BJ

    · Share on FacebookShare on Twitter
  • conniehar
    conniehar Member Posts: 954
    edited August 2012

    Thanks for the replies ladies.  Google really isn't a good friend when you are looking up medical info!  Scary stuff out there.  I am sure I will be fine!

    BJ - good to hear from you.   I check the IL thread often but it has just gotten to big for me to keep up with!   Kids are doing well and went back to school yesterday!  That's good for us moms but not so good for you!   We have had a good summer on the boat.    Sorry to hear about your rib!   Hope to see you at Xmas time if not sooner!

    · Share on FacebookShare on Twitter
  • suemed8749
    suemed8749 Member Posts: 1,151
    edited August 2012

    Hi Connie - I've gotten Reclast for osteopenia for 3 years now. I don't even notice any side effects when I have the infusion. I worry about jaw necrosis, but I had 3 crowns replaced this summer (and one root canal redone), and all seems to be well.

    Stay informed but stay wary of Dr. Google. I had myself diagnosed with a detached retina week, but the eye doctor said I only had a little normal hardening of the vitreous jelly. We do tend to look for the worst after a cancer diagnosis, don't we?

    · Share on FacebookShare on Twitter
  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited August 2012

    I've been on Femara for 4 years and have developed some osteoporosis in spite of Fosavance and daily cal/mag and VitD3 supplements.  My doc suggested either Reclast or Prolia.  Natch, I went to Dr. Google and was horrified by some of the comments made by patients.

    Then I talked to some women (including my older sister) about Prolia, and also asked my doc if any of his patients had complained about SEs.  The answers in all cases were negative, so I had my first Prolia shot over a month ago, and no SEs!

    This doesn't answer your questions about Reclast (!) but I did wish to say that it's probably a good idea to NOT do too much googlingWink. 

    · Share on FacebookShare on Twitter
  • conniehar
    conniehar Member Posts: 954
    edited August 2012

    Thanks for the additional replies ladies!  Glad everyone has had positive experiences!

    · Share on FacebookShare on Twitter
  • dobie
    dobie Member Posts: 424
    edited September 2012

    Started anastrozole 3 months ago and baseline Dexa scan showed osteoporosis in spine.  Consulted endocrinologist and decided on Reclast since it also may have some anti-cancer properties.  Had my first infusion 2 weeks ago and had virtually NO SEs.  Maybe some increased achyness for a day or two for which I took some Tylenol. I have heard that there are more side effects with the first infusion and less with subsequent so I consider myself home free.   Just about anything has the potential for side effects but serious ones are extremely rare, but where is the drama in that?!  The dramatic is always so much more fun!! LOL.

    · Share on FacebookShare on Twitter
  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited September 2012

    Saw my MO for the first time on December 30th, 3 weeks after my BMX. She prescribed Anastrozole, but since I was still having significant pain from surgery, she said she'd wait a few months to start. And since I've had osteopenia since 2007, it was her plan to put me on one of the bisphonates (probably Fosamax) as well. (Which made me crazy thinking about it....I didn't want the AI, I didn't want any bone-builders!)

    But by the time I was getting my fills, I'd entered the Kaiser weight management program, which is a basically a medically-supervised fast for four months. The MO said that she didn't want me to start the Anastrozole because if I had side effects, we wouldn't know if they were from the fast or the medication.

    So fast forward to this morning. It's been almost a year since my dx, and 9 months since my BMX, and 2 weeks since exchange. I'm in the "Transition" phase of the diet, and back to partial regular food, and partial Optifast products. I get 1115 calories a day. So far, I've lost 54 pounds and 63 inches, and have been exercising like I used to 30 years ago.

    I met with the MO, and all she did was tell me to start taking the Anastrozole. I asked about further testing, and she said bloodwork every 3 months, as well as an exam every 3 months. No SEs? I can go to 6 month intervals.

    As for other meds, she said I could take fish oil, calcium, and Vitamin D, but NO multi-vitamins because recent studies have shown that anti-oxidants can actually cause growth in cancer cells.

    DH and I got out the door, when I realized she hadn't mentioned anything about the bone-builders!!!! I wanted to yell "RUN!" in case she suddenly remembered and tried to stop me from leaving. Undecided

    Then I got to thinking that perhaps the weight loss and exercise made it less crucial that I take them? The osteopenia has remained stable for the last five years.

    Who knows. I take my first Anastrozole tonight.

    · Share on FacebookShare on Twitter
  • suemed8749
    suemed8749 Member Posts: 1,151
    edited September 2012

    Wow, Blessings, good for you! No, WONDERFUL for you! You have really taken radical action to improve your health, and it sounds like you have had and will continue to have great results. You go, girl!

    · Share on FacebookShare on Twitter
  • conniehar
    conniehar Member Posts: 954
    edited September 2012

    Great to hear your good news Blessings!   What a great improvement!

    I am waiting on my bloodwork and if that comes back ok, I guess I will be moving forward with the Reclast. 

    · Share on FacebookShare on Twitter
  • newbe6
    newbe6 Member Posts: 44
    edited October 2012

    I had one reclast infusion for osteopenia in May 2011. The side effects immediately following the infusion were severe, diarrhea, disorientation, and fainting. Those side effects only lasted for about three hours.

    However, about six months later I had a dental problem involving a cracked tooth that had already been treated with a root canal and one root extraction years earlier. This tooth could not be saved, and would be my only lost tooth. I thought that there would be no serious complications, and I could get a implant. My dentist told me I was not eligible for a bridge, because of adjacent route canals. So I would have an implant. I went to the oral surgeon and he was very reluctant because of just one reclast infusion. His own wife is a breast cancer survivor and he is very opposed to reclast due to the risk of osteonecrosis of the jaw. I went for a consult with a second oral surgeon, who was like-minded. Nonetheless. I am going to proceed with the implant, but I am worried about osteonecrosis of the job. The greatest risk of osteonecrosis of the jaw occurs with unexpected invasive dental procedures, such as extractions and implants. I would recommend oral bisphosphonates over infusions if you have a choice. They pose a much lower risk for osteonecrosis

    · Share on FacebookShare on Twitter
  • conniehar
    conniehar Member Posts: 954
    edited January 2013

    Hi Ladies -

    I just wanted to come back on this thread and let everyone know that I finally had the Reclast infusion about a month ago.  It is probably too soon to speak of lasting effects, but so far, so good.  I had about 4 days of flu like symptoms and have felt completely fine ever since.   I was however really freaked out right after the infusion and I really hope i don't have to have another one of these.

    Happy New Year!

    · Share on FacebookShare on Twitter
  • hopedreams
    hopedreams Member Posts: 85
    edited March 2014

    Hi Connie.. Please read up on the latest findings on reclast..fosomax & a few others.. They experts are finding them dangerous.. I am not writing this to scare U in any way...Just that I have osteoporosis & fell on  a cracked sidewalk back in July 2013..& fractured my hip... OUCH !!   now have a rod & pins in femur.. and I had to do research on Forteo.. which Dr. suggested for me.. But now changed his mind..He is a metabolic expert & also an orthopedic surgeon..But the  good news is..I had what they call the "HERNIGOU  PROCEDURE"  for a non union bone in hip. back in Dec  2013 .and now my bone is growing !!  so good news with that..just educate yourself on reclast  etc..so U are  informed ..good luck  ~Hope **** also the oral pills are also very dangerous..in fact they cause hip fractures..w/o even falling..also  jaw bone serious problems

    · Share on FacebookShare on Twitter
  • Golden01
    Golden01 Member Posts: 916
    edited March 2014

    My MO is recommending Reclast for me. I have osteopenia and am on Tamoxifen now but will be switching to an AI this summer. Will do my research and look forward to hearing of experiences from others. Need to see the dentist before starting. He is recommending infusions twice a year. 

    · Share on FacebookShare on Twitter
  • LG51
    LG51 Member Posts: 2
    edited March 2014

    I have had 2 infusions of Reclast over the past 2 years with no side effects. My last dexa scan showed improvement from osteoporosis to osteopenia.

    · Share on FacebookShare on Twitter
  • Golden01
    Golden01 Member Posts: 916
    edited March 2014

    http://annonc.oxfordjournals.org/content/24/2/398....

    This may have been posted before because it is from last year. My MO recommended Reclast as he feels it has the most solid research related to decreased risk of recurrence. He is not as convinced that all the biophosphonates (Fosamax, etc., work exactly like the Reclast). Not sure what I think and have been slow getting my blood work done and dental appointment to be ready for Reclast if I decide to take it. 

    · Share on FacebookShare on Twitter
  • Golden01
    Golden01 Member Posts: 916
    edited March 2014

    Here's another study, even older but with more women,  that didn't show the benefit from Reclast in terms of recurrence. Take a look though at the charts further back in the article. Looks like for women like me (postmenopausal more than five years) there may have been some benefit. What do you think? These decisions can be hard. 

    http://www.nejm.org/doi/pdf/10.1056/NEJMoa1105195

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited March 2014

    My doc, who has been involved with some of these studies on zometa/reclast and recurrence/bone mets, says that so far the studies show benefit for women who were already menopausal when DXed. Because I was not, he doesn't think that the possible benefit outweighs the drawbacks. 

    My onc, OTOH, is all itchy to put me on Prolia, but I suspect it is partly because it is a moeny-maker for the docs (not being a big pharma conspiracy nut here, the company that makes it has an unusual distribution system and has been busted for bribing doctors).

    · Share on FacebookShare on Twitter
  • fran72
    fran72 Member Posts: 1
    edited March 2014

    Hi,

    It has been 3 years since I finished chemo/radiation for my breast cancer. I am on tamoxifen and was told by doc that she recommends zometa IV twice a year for prevention of cancer reoccurrence.  I never heard of this!  It was a shock to think I need an IV again that could make me not feel well and to be given in the chemo room where I was so sick.  My first treatment is in sept.  I have osteopenia and post menopausal. Is this a new treatment?

    · Share on FacebookShare on Twitter
  • doxie
    doxie Member Posts: 1,455
    edited March 2014

    Welcome to bc.org, fran72.

    Zometa is used to build bone density.  There are studies, pro and con, as to it's protection against BC getting into the bones.  The research is now showing protection in post menopausal women, but not pre.  If it wasn't being used for treating your osteopenia, I doubt she would be suggesting it as long as you have no mets to your bones.  

    I've had one infusion and had intense bone/joint pain the next day.  Nothing remarkable after that.  I've been able to keep my bone density stable so have avoided another infusion.  

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited March 2014

    conniehar I just got back from the Rheumatologist. I officially have osteoporosis. She told me that typically they do start women with osteopenia who are on the AIs on some kind of bone building drug. I wish my onc sent me sooner. Now I am told I am not allowed to use weights over my head over 5lbs, no more crunches, sit ups or anything to bend my spine forward! I'm pissed. My Rheumaetologist is starting me on Fosamax. She said it was out longer and they know the results (and SE). If I do have acid reflux issue or if the Fosamax doesn't work then we'll look at some of the injectibles. 

    BTW I'm not happy right now. I really need core exercises. Not supposed to do planks because of the implants.

    · Share on FacebookShare on Twitter
  • doxie
    doxie Member Posts: 1,455
    edited April 2014

    logo, 

    I'd be ticked off too.  But I'd also sneak in heavier weights and crunches if I was already doing them.  I only take doctor's advice in pieces.  Sometimes they look at us as an average patient.  You come into this fit.  Most women don't.  I'll send you the email I send my mom recently.  It has suggestions for exercises.  

    · Share on FacebookShare on Twitter
  • hopedreams
    hopedreams Member Posts: 85
    edited April 2014

    PLEASE...READ ABOUT FOSOMAX..THEY ARE BEING SUED BY MANY MANY WOMEN.. IT'S A HORRIBLE DRUG.. ITS A CLASS ACTION LAW SUIT..CAUSES BONE PROBLEMS IN YOUR JAW..AND ALSO CAUSES FEMUR FRACTURES. I REFUSED IT MANY YRS AGO..THEN RECLAST WAS RECOMMENDED..I REFUSED THAT ALSO..TOOOOO MANY SIDE AFFECTS..NOT WORTH IT..JUST MAKE SURE U TAKE ENOUGH CALCIUM CITRATE..AND A GOOD DOSE OF VITAMIN D 3..ALL I ASK IS FOR U TO DO YOUR OWN  RESEARCH..AND U WILL UNDERSTAND WHERE I AM COMING FROM..I DO NOT MEAN TO SCARE U..BUT IT'S ALL TRUE.. GOOD LUCK..~HOPE

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited April 2014

    hopedreams I am already doing calcium... actually my doctor today today me to reduce it. Vitamin D3 and D too. I was informed about the jaw  and femur issues. The risk is higher for those who are on it for longer periods of time. My reumatologist only expects me to be on it for 1-2 years. All the bone building drugs have these risks including Fosamax... the pill that we are trying first.

    Doxie the concern is that the spine will break because it is not as strong. She showed me a model that looked very much like the illustration below. You can see how the osteoporatic spine would be more at risk for breaking if it were bending or had more weight on it. :

    image

    I can always use bands to strengthen my back. But I really need to find challenging exercises for my core that doesn't use the chest muscles much (planks are out).

    · Share on FacebookShare on Twitter
  • Ariom
    Ariom Member Posts: 6,197
    edited April 2014

    Glad to have found this thread.

    I just took my first Actonel tablet yesterday. I have Rheumatoid arthritis and have had the same -3 reading for Osteoporosis for 12 years. I had an infusion of Reclast, years ago and it made me feel like I was 100 years old, it kicked in my arthritis and I felt like I had a bad flu for weeks. I refused to have it again and since then my doctors have been pushing for either Prolia or the tablet bone builders. I just hate the thought of any of them. I have always taken vit D and Calsium, but I have been on Steroids for about 17 years.  Anyway, I took the tablet yesterday, stomach issues started within an hour of taking it, diarrhea, and reflux, sore bones during the night. It feels like a damned if you do, damned if you don't situation.  

    · Share on FacebookShare on Twitter
  • hopedreams
    hopedreams Member Posts: 85
    edited April 2014

    TRY PHYSICAL THERAPY..TO BUILD CORE MUSCLES..I AM NOW DOING THAT..MY MUSCLES ARE "MUSH"  DUE TO NEVER DOING ANY EXERCISES OVER THE YRS..I ALSO HAVE BEEN ON PREDNISONE FOR MANY YRS..FOR CROHN'S DISEASE..ALSO WAS DX WITH OSTEOPOROSIS ABOUT 2 YRS AGO..THAT IS WHY MY FEMOR/HIP BONE DID NOT HEAL AFTER I FELL & FRACTURED IT THIS PAST JULY..BUT I HAD "HERNIGOU PROCEDURE" IN DEC 2013 AND MY BONE IS NOW GROWING..!! SO FAR SO GOOD..! I HAVE BEEN SEEING A METABOLIC SPECIALIST & ALSO HE IS AN ORTH SURGEON..IN NYC..  ONLY 3 DRS IN THE USA..DO THIS AMAZING PROCEDURE..& HE IS ONE OF THEM.. I AM NOW WALKING AGAIN..!!! THANKS TO THIS DR.. AND GOD!!  I WOULD NEVER TAKE ANY OF THOSE PILLS OR RECLAST.. THE MEDICINE *** THAT CAN BUILD BONES IS CALLED.".FORTEO"..IT'S AN INJECTION THAT U WOULD BE GIVING TO YOURSELF.MY. DR DOES NOT WANT ME TAKING THAT EITHER..SINCE I HAVE A RARE ON GOING SKIN CANCER..GOOD LUCK TO ALL OF U WILLING TO TAKE THESE POISEN PILLS & RECLASTG..  [ IF I DIDNT FALL ON A CRACKED SIDEWALK..I AM SURE I WOULDNT HAVE FRACTURED ANY BONES..!! ]

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited April 2014

    hopedreams I'm not in bad shape... I just want to stay in good shape. I have been doing all the exercise, supplements and eating the right foods to get calcium but it's just not enough with my family history, frame combined with cancer treatment (chemo now Anastrozole). If I do not take one of these drugs to stop it I will be in big trouble when I get old. I was diagnosed with osteoporosis at age 52 (this past fall). That's young.

    If I break my spine I could be in deep shit.

    · Share on FacebookShare on Twitter
  • mdg
    mdg Member Posts: 3,571
    edited April 2014

    I was diagnosed with severe osteopenia last year at age 47 with a t score of -2.4.  I am a fitness instructor and eat healthy.  It was a shock.  My MO sent me to an endocrinologist to treat this.  I have been on Atelvia for a year and just got a repeat decade scan.  T score is now -2.0 so I had a 5% increase in bone density in a year.    My endo said that Atelvia has the least side effects for the stomach as I have GI issues.  I have had no issue with my stomach at all with it.  I still take calcium and vit D.  My MO won't switch me to an AI be because of my bones.  I am still on tamoxifen for now even though I had ovaries out and am post menopausal.

    · Share on FacebookShare on Twitter
  • Momine
    Momine Member Posts: 7,859
    edited April 2014

    I just came back from the orthopedist, where I had gone to discuss my scoliosis and osteopenia on the spine. My hips are fine, but my spine is at -2 after 2 years on an AI (I was already -1.6, when I started the AI).

    He was not jumping to give me bone builders. He first wants to test my D, calcium and phosphorus levels. He also wants me to get a urine test to see how much calcium ends up there. He wants to rule out any metabolic issues, which I have been trying to tell my onc to do for a year now. Then he is sending me on to an osteoporosis specialist, with whom I will decide how to manage this.

    · Share on FacebookShare on Twitter
  • lago
    lago Member Posts: 17,186
    edited April 2014

    momine I had all those tests too (endocrinologist ordered to rule out other stuff). Still not sure if I have celiac disease but the test did indicate I could and maybe that's why the sudden drop when I was stable. Will be seeing a gastroenterologist on Monday. I wish I had started the drug earlier before I got osteoporosis. I've had osteopnia since before diagnosis. Chemo really made me drop and the 3 years on the AI is making it worse + chemopause and maybe celiac. My spine is the biggest problem.

    What scars me about the spine is I did loose .5" in height in one year! Curving can eventually effect your breathing... and if you have scoliosis that makes it even more of an issue. I know an elderly woman that was so hunched over her lungs were getting crushed due to her scoliosis. She had 2 8 hour surgeries to straighten out her spine. She is breathing  just fine now. Do not let your spine get that bad. Be sure they address this now! Even her surgeon didn't understand why they didn't address this earlier.

    PM me if you want to chat more.

    · Share on FacebookShare on Twitter

Categories