Actonel side effects

My 94 year old mom was put on Actonel about 18 months ago, something that I had resisted for a long time, and finally did consent. Could not believe that at her age it would offer much help.

The known side effects are beyond belief. Here a while back, I quit having her take the med. I thought I was noticing eating and swallowing issues. I did mention this on numerous occasions with her MD, not just the Actonel as a possible problem, but my observations. I was totally 'shined on' by the MD, and he attributed 'these symptoms' to a jillion other reasons. None of which I was willing to accept.

Finally, after much prodding on my part, a test, a wrong one at that, was done-----And YES, my mom had serious swallowing issues. Ones that are indeed, life threatening.

We are dealing with these problems, via much retraining. Still in my heart, and what my good judgement tells me, Actonel may well have been the culprit in this whole horror tale.

Anyone else have similar experiences? These bone meds really scare me, and I, for one, will NOT take them.

Would love some input from others. Thanks.

Nanc

My 60 year-old mother took Actonel for only 7 weeks and her esophagus completely closed so that she could not longer eat OR DRINK!!! She has now been diagnosed with esophageal and stomach cancer and must have a surgery to have both areas of cancer therein removed and a new stomach fashioned out of what remains. Her life will NEVER be the same again.

Has anyone else had a similar experience?

I have been taking Actonel for two years. In October last year I thought I had laryngitis. I was given antibiotics twice in November and then in December. It didn't cure instead I started feeling lump/ball in my throat. This feeling is still there. I went for private consultancy. They put a camera in my throat. i told my GP and the ENT consultant that I'm on Actonal 35mg. but they didn't pay any attention. i was told Its stress and I need to have speech thrappy as I started having difficulty in speaking.Now I have developed pain in my throat. I was told by consultant I should take any homeopathic its good for throat( Consultant). Now I'm 100% sure its Actonel and I have stopped it yesterday and now want to see the GP to do further tests bout the damage been done.I'm a teacher. I'm in continous pain now. My neck glands feel like inflammed. Is there any doctor in the forum who can suggest me any self help.

Well, now over two months have passed from when my mom's problems first were addressed.

One, I have 'eliminated' any bone meds from what she takes. My choice, and her new doctor simply 'has gone along with me.'

Two, Mom spent 6 weeks in skilled nursing and via work with a speech therapist and a lot of 'coaching' by me, my mom has been retrained to swallow.

Three, probably I will never know for certain, but my mom is now 100% better, is regaining weight, and things are looking good.

And a 4th, in the very beginning of all of this, I noted that her voice had a nasal tone to it, best way I could describe it. Additionally, she, too, was treated with antibiotics for 'a possible cold.' Now, I no longer note 'this troubling sound' of her voice.

I still, and yet, have had no 'professional' that would address my 'way of thinking.' Don't know why, as I feel that I have had valid concerns, as well, as input when it comes 'to success.' One so has to be advocate for oneself and loved ones. If noone else will 'think,' then I find that it all falls on me and my good judgement.

Nanc wrote:

My 94 year old mom was put on Actonel about 18 months ago, something that I had resisted for a long time, and finally did consent. Could not believe that at her age it would offer much help.
The known side effects are beyond belief. Here a while back, I quit having her take the med. I thought I was noticing eating and swallowing issues. I did mention this on numerous occasions with her MD, not just the Actonel as a possible problem, but my observations. I was totally 'shined on' by the MD, and he attributed 'these symptoms' to a jillion other reasons. None of which I was willing to accept.
Finally, after much prodding on my part, a test, a wrong one at that, was done-----And YES, my mom had serious swallowing issues. Ones that are indeed, life threatening.
We are dealing with these problems, via much retraining. Still in my heart, and what my good judgement tells me, Actonel may well have been the culprit in this whole horror tale.
Anyone else have similar experiences? These bone meds really scare me, and I, for one, will NOT take them.
Would love some input from others. Thanks.
Nanc

my mom is 76, and was put on Actonel in Dec/Jan....she went through with a root canal..and was put on a "super anti biotic" with all physicians knowing she was on Actonel...now because of the interaction...she has bone cancer!!!

Nasty drugs.....thanks for the heads up on the throat issues.I have been gleaning the internet and it seems this is a well diagnosed side effect!

Everyone....do your own finding and seeking..before allowing chemical drugs enter our bodies ....all for the financial success of the big drug companies!!!
I will be seeking Homeopathic and Naturopathic consideration on all levels.

Hi Surryia, dont take it again! see my recent post to Nancy! I had the sameGet ball feeling in my throat and when I pressed the area where your bra sits at the front of my breast bone, it was so sore and tender. I have gotten rid of the ball feeling with omeprazole which controls the acid in the stomach so therefore no reflux. I cant eat certain foods now - no citrus and chocolate gives me such discomfort I wont touch it again. High fat foods and acidic foods are no longer an option. I have to be monitored now every three months probably with endoscopes to make sure I am clear of any nasties. My condition is that the top of my stomach has come thru my oesophagus and the acid has changed that part of my o to the same as the lining in my stomach. At this point the lining of the O becomes unstable and in a small percentage can change to cancer! I will never take another actonel tab again! You just know when something is not agreeing with you, trouble is no one listens to you! Good luck

Surryia wrote:

I have been taking Actonel for two years. In October last year I thought I had laryngitis. I was given antibiotics twice in November and then in December. It didn't cure instead I started feeling lump/ball in my throat. This feeling is still there. I went for private consultancy. They put a camera in my throat. i told my GP and the ENT consultant that I'm on Actonal 35mg. but they didn't pay any attention. i was told Its stress and I need to have speech thrappy as I started having difficulty in speaking.Now I have developed pain in my throat. I was told by consultant I should take any homeopathic its good for throat( Consultant). Now I'm 100% sure its Actonel and I have stopped it yesterday and now want to see the GP to do further tests bout the damage been done.I'm a teacher. I'm in continous pain now. My neck glands feel like inflammed. Is there any doctor in the forum who can suggest me any self help.

Thank you all on your postings. My mom was taking Actonel for 6 month and now she is coughing for the last 6 weeks. She has sore throat and can't speak two sentences without coughing.
If she stops now how long from your experience it will take for her to get better? And should we run other tests to check if this drug affected her stomach and esophagus?
Sincerely, Tanya

I am a 63. Several time in the past my doctor prescribed Actonel or similar medication and I found that I could not tolerate it at all with my "sensitive" stomach. In March 2005, she insisted that I could tolerate the new weekly Actonel and because I now have osteoporosis, I must overcome my resistance to taking drugs because I needed it. After only one one-week Actonel I experience a severe sore throat, heart palpitations and restricted breathing and noticed that I was unsteadying on my feet. I reported the side effects to my doctor who advised me to continue the Actonel anyway as the advantage outweighed the risks. Three days later, I fell and broke my wrist. I continued the Actonel for three weeks and quit because my sore throat and breathing was becoming worse. I suggest to the physiotherapist caring for my wrist that I thought that Actonel had made me unsteady on my feet and may have contributed to my falling. She said that I was not the first patient to tell her that. I made the same suggestion to the orthopedic surgeon who did not dismiss the idea and asked me why ever I would take "that".

My symptoms continue. My doctor treated me for “silent” reflux and post-nasal drip which aggravated the symptoms. I’ve had a chest ex-ray for Pneumonia and tested for the presence of Phylorbacteria. In February 2006, I went to emerge with an acute asthmas attack – many breathing tests later show that I am not asthmatic but my breathing remains compromised. I had a test for Barrett’s esophagus last week – negative. I have a scheduled throat ultrasound, a lung CAT scan and 24 hour PH monitoring pending. Meanwhile, by the end of day, my throat is too sore to talk or eat so I take Tylenol and fall into bed (although, I hate taking drugs!).

Does anyone have a medical diagnosis for the damage caused by Actonel?– and the cure?
Thanks,
Bev

Has anyone tried fortical?

Fortical sounds like the best way to start. I am 53 and just diagnosed with osteopenia. I did some research and learned that Fortical (Calcitonin Salmon) is the most natural, safest way to protect my bones from further detioration. I am fearful about going on Fosamax or boniva now because I could be on it for the rest of my life...could be 20- 30+ years...who knows what the long term effects could be. That stuff stays in the bone forever...nothing can get rid of it...It acts like Thompson's Waterseal coating the bone, can cause hypermineralization...interfer es with natural bone remodeling, unlike calcitonin that the body makes...The calcitonin in Fortical is about 40%+ more potent.

Thanks for the suggestion, I hope it helps. I think I'll remain a test-case for not taking prophylactic medication. Who can predict future health? My chiropractor/acupuncturist has found that my throat, chest, neck and ribs are in severe chronic spasm. After 18 months of pain and worry, her treatments are relieving the symptoms. I still have a CAT scan and throat ultrasound pending to determine if Actonel cause a medical condition.
best of luck,
Bev

Why did my address change to York Mills, Canada?

i have 32 year old woman who had a complete hysteroctomy 3 years ago. i was put on actonel a few months ago because a bone scan showed osteopenia.when i started takeing it i called my obgyn and told him i was haveing horrible heartburn.i was told continue takeing it because the risks were far worse if i did not.now i am being treated for gi bleeds.what are we supposed to do?

Well, my problem is not quite as severe as those described above but serious for me. I took Fosomax for 3 years and suffered from constant gas - I was burping every 10-15 seconds for about 2 years and I try not to exaggerate. I timed it. So I quit the Fosomax and it lessened a great deal; when I quit dairy it went away completely. Then I tried Boniva and had the same side effect, so I moved on to Actonel and had 2 days of burping. SO now I'm looking for something else.

Elaine Adler wrote:

Well, my problem is not quite as severe as those described above but serious for me. I took Fosomax for 3 years and suffered from constant gas - I was burping every 10-15 seconds for about 2 years and I try not to exaggerate. I timed it. So I quit the Fosomax and it lessened a great deal; when I quit dairy it went away completely. Then I tried Boniva and had the same side effect, so I moved on to Actonel and had 2 days of burping. SO now I'm looking for something else.

Elaine - no wonder as fosamax, actonel & boniva are all the same class of drugs called biphosphonates. This class has been linked to some serious side effects like this jaw death thing. For other side effects pls check also www.askapatient.com
Thats why I suggest that you change the class of drugs and go to the calcitonins (like fortical)

I have been taking Actonel for 7 weeks, and the past couple of weeks having been experiencing severe muscle and joint pain. I won't take it again. I am seeking a homeopathic remedy.

I was fortunate enough to be part of the Actonel double-blind study a dozen or so years ago and be in the "treated" group. The bone density of the treatment group improved so much that the study was prematurely terminated when Fosamax was FDA approved. For me the most annoying part of the regimen was that I had to get up early every day and drink all that water before going to work. It seems to me that anyone who has bad side effects should stop taking it. I'm curious about this jaw death side effect? When did this come about? I sounds awful. At the same time, hip fracture can be deadly. Is jaw death something new, a result of the weekly regimen instead of daily as before? As for extremely elderly folks, I've been on it more than 12 years, but would not recommend it to my 93 year old mother - even when she was 80. Risk vs. benefit seems too great.

bev wrote:

Has anyone tried fortical?
Fortical sounds like the best way to start. I am 53 and just diagnosed with osteopenia. I did some research and learned that Fortical (Calcitonin Salmon) is the most natural, safest way to protect my bones from further detioration. I am fearful about going on Fosamax or boniva now because I could be on it for the rest of my life...could be 20- 30+ years...who knows what the long term effects could be. That stuff stays in the bone forever...nothing can get rid of it...It acts like Thompson's Waterseal coating the bone, can cause hypermineralization...interfer es with natural bone remodeling, unlike calcitonin that the body makes...The calcitonin in Fortical is about 40%+ more potent.

Have you been on the Fortical for long time and please can you tell me if you are having any side effects. Thanks Alis

Nanc wrote:

My 94 year old mom was put on Actonel about 18 months ago, something that I had resisted for a long time, and finally did consent. Could not believe that at her age it would offer much help.
The known side effects are beyond belief. Here a while back, I quit having her take the med. I thought I was noticing eating and swallowing issues. I did mention this on numerous occasions with her MD, not just the Actonel as a possible problem, but my observations. I was totally 'shined on' by the MD, and he attributed 'these symptoms' to a jillion other reasons. None of which I was willing to accept.
Finally, after much prodding on my part, a test, a wrong one at that, was done-----And YES, my mom had serious swallowing issues. Ones that are indeed, life threatening.
We are dealing with these problems, via much retraining. Still in my heart, and what my good judgement tells me, Actonel may well have been the culprit in this whole horror tale.
Anyone else have similar experiences? These bone meds really scare me, and I, for one, will NOT take them.
Would love some input from others. Thanks.
Nanc

I wonder if your mom is suffering from Osteonecrosis of the Jaw (ONJ) or "dead jaw."

Here is some information: http://www.schmidtandclark.com/Actonel/

For those looking for a Homepathic have you considered looking into a "Bone Formula" such as Country Life's Bone Density Factors; Jarrow's Bone-up ; Solaray's Bone Tone or Ethical Nutrient's Bone Builder or an Ioninc form of Calcium and Magnesium? There are many good formulas from several of the major vitamin companies!Many Health care professionals can also get things like Metagenics bone builders.

Alis wrote:

<quoted text> Have you been on the Fortical for long time and please can you tell me if you are having any side effects. Thanks Alis

I am on fortical for about 6month. My doctor recommended it after having severe side effects while on actonel. Told him that I want a safe drug. He told me that I won't have any troubles as (even though fortical is new on the market) the active ingredient has a safety record of 30years. Meanwhile I did a little research and found out that fortical is just an improved version of miacalcin. Therefore just check out askapatient.com and serach for miacalcin .. hope this helps!