I was diagnosed with osteoporosis about 4 years ago........pretty bad T-scores! I started on Actonel immediately. In two years my T-scores improved to the level of osteopenia and I am looking forward to my next scan to see if I've improved even more. I have had four spinal surgeries are therefore am more prone to arthritis and joint pain.
However, I just get up pop down the Actonel with all of my other supplements and take them with whatever I'm drinking, OJ, coffee, DanActive.......doesn't matter.....I'm always standing because I immediately start to make my morning latte, brush my teeth, get ready for the day!
I have NEVER had heartburn or any side effects from Actonel after four years! Of all of my friend on any of these drugs, those on Boniva have switched to Actonel....it's much easier on your stomach than even Fosomax.........but there will always be those who "panic" at the first sign of a little heart burn or some muscle pain (which can be cause from nearly anything)
I say to all of you, pick your poison, osteoporosis or a little heartburn......thankfully I now have neither!
Well, that's cool you can take the Actonel without strictly following the directions, and stil feel good. Everything I've read sounds so - YOU MUST DO THIS OR ELSE. There's hope, then, for those facing these drugs that maybe the challenging side effects aren't universal. Thanks for adding your input- PJH
All I can say is try it.............judge for yourself. DO NOT be afraid of label warnings........use your judgement............do you want to take the risk of osteoporosis or even osteopenia? I could take it and lie down and it wouldn't effect my GI tract.......I think people are too easily brain-washed................DO NOT look for reasons NOT to take it..............think of how you will feel with a broken hip in a few years............I'd rather have a little heart burn.........but fortunately I don't get that and yet I have always had a horrible digestive tract.........tons of endoscopies and colonoscopies.......and Actonel has never changed a thing!
Kathleen, so many times, for those of us with chronic illnesses, it comes down to weighing costs and benefits. If I take this drug, it will make me sick AND it will make me better. How sick do I want to feel? How much better will I get? For breast cancer, it's how much pain do I want to be in every day vs. how much do I want to lower my recurrence risk? For osteoporosis, am I willing to risk fractures to avoid possible serious gastrointestinal issues? Choices, choices... Everyone's experience is their own; everyone has to make their own tough choices, that's for sure. PJH
I've faced the breast cancer decision and opted NOT to receive chemo, since quality is more important to me than quantity of life...........my own personal decision and not right for everyone.
But some GI distress seems so much easier than a hip fracture to deal with........I truly wish you the best in your decision...........a lot of it is mind over matter.........I can talk myself into feeling heartburn.............since I'm an orange juice addict.........GI distress is not life threatening, but a bone fracture can be..............again it's all a matter of personal choice and as I said, quality of life is so much more important to me than quantity of life....................
Best of luck in whatever your decision may be.
Kathleen
I went on the Actonel-75 mg(2 consecutives/month) for 2 months. The first
month, I experienced aching joints. Then the second month, something happened
with my esophagus and also caused severe aching in alot of joints. The esophagus
problem was so severe that 2 weeks later, I am still having problems swallowing
and it feels like my esophagus is caving in. I feel awful, and will never again take
this medication. Nothing seems to help the esophagus and throat pain.(and
no one seems to have a solution)
Thank you for your concern.
My doctor just wants to send me to a specialist but that will take ages and frankly
I am not interested in having an endoscopy because that won't solve the problem.
Plus the outcomes are usually to take proton pump inhibitors, which I have tried in the
past for another problem and it made things worse and gave me heartburn, so I can't take these meds.
As to trying another version of the bisph.- no way I want to be a guinea pig, to see
if some other form might work. I already know that I am extremely sensitive to most
meds. So I know now from this experience, that any other bisph. will probably
produce similar problems. I am just eating less(and actually noticed that
eating nothing all day atleast gives me a bit of relief). And I am trying to make sure not to eat any foods that are acidic and foods that just slide down the throat easily.
Oddly enough, I have just discovered that chewing gum seems to ease the discomfort
in the esophagus, but that I know is not the best thing to do, plus chewing leads
to worse headaches for me, so I am trying to chew gum, only when desperate!
I just wanted to point on Dr. Gonter's post on dealing with the side effects of oral bisphosphonates: Tolerating Bisphosphonates - When Do You Go from Oral to IV?
Hi All: I just thought I would add some thoughts here and hope you don't mind.
Mary when I needed to have a tooth extracted, my dentist wouldn't do it without a release from my PCP, because I took actonel. Shortly after getting that release the dentist decided he didn't want to do the extraction and sent me to a oral surgeon. I went through all of this after I finished taking actonel so you aren't alone with this type of thing. I had the tooth extracted and didn't develop any problems, but had I still been on actonel, the oral surgeon would have waited to do the extraction.
Kathleen, I would be hard pressed to find a Dr that hasn't heard of ONJ-this topic comes up whether I go to an Endo, Rheumy, or Internist and they bring it up not me since I'm not taking any bisphosphonates right now. The drug co's have been listing this on the package insert for several years and it's the oral surgeons, dentist, and other clinicians that are taking it seriously. Even though the incidence of ONJ is really small in patients given the oral dosage of bisphosphonates, and higher in cancer patients who recieved the stronger iv dosing, they still have to be cautious.
I'm really glad you are able to take actonel the way you do, but if it was me I would worry about the absorption problems that food, juices and coffee causes with bisphosphonates. The reasoning for coming up with the food, beverage and postural restrictions were based on the studies done where only 50% of the active ingredient was available for absorption, after study participants consumed food, juices, coffee, or laid down shortly after admin. You must be one of the lucky ones and I'm really glad your scores have improved so much!!
Bisphosphonates have the tendency to start dissolving in the mouth, throat, esophagus and pharynx, which explains the need to stay upright and take it on an empty stomach, and why they can cause ulceration problems in these areas.
I took actonel because additional frax's scared me more than the drug, and luckily I only had minor side effects that went away when I was finished with it. I've had 7 spinal fusions and 6 fraxs so I know what you mean about the pain of arthritis and broken bones.
There is a patent pending on the use of a chelating substance that could be added to the bisphosphonates, that would enable the pill to be taken with or without food or any kind of beverage and also with calcium. If the patent is accepted by the drug co's it would make the medication much easier to take plus it should elliminate the GI/esophagus probs that this med causes. The pill would be taken orally, but a chelated additive or delayed release capsule (enteric coated) would allow the pill to reach the lower intestines, and stay there for a period of time before it would start to dissolve, eliminating the dissolving further up the intestinal tract.
Hopefully this technology will be implemented, in the near future, by the manufacturers of bisphosphonates since, as it stands, these gastro intestinal/food restriction problems are one of the main reasons patients stop taking these meds.
Great Blog PJ...
I disagree that drugs are the only answer. Dr. Naidu has developed OsteoDenx, a bio-replenishment product, which is proven clinically to dramatically increase bone mass safely, naturally and effectively with absolutely no side effects. Your body used to make this element but no longer produces as much as you age. It is sold exclusively through a Japanese company called Nikken. You can buy it at www.nikken.com/pusey.
Your bones are a storehouse calcium which all your organs need. If you trap the calcium in the bones you are depriving the rest of your body of Calcium. This is dangerous.
I was prescribed alendronic acid tablets which I took for about four years. Since taking the tablets I have broken a metatarsal, had a tooth extracted because bone was shearing off it; the place did not heal for about two or three months and I could feel the bone with my tongue. It did gradually heal. I have had quite a lot of heartburn, though more in the neck area than lower. I have had damage to my larynx, caused by reflux, and cannot sing for very long (singing is one of my favourite activities). And just over a week ago I've developed lots of floaters in my right eye. I had an emergency appointment at aspecialist eye clinic with quite thorough tests and I've been told the retina has not become detached and there aren't any blood clots but to get in touch straight away if I get any more of the little lightning flashes.
I've already refused to take any more alendronic acid a couple of months ago.
Comments?
Judith, everything you mention, except the boroken metatarsal and eye problems, can probably be connected to the Fosamax. Did your dentist know you were taking it? If so, s/he should have been extra-careful with your dental work, and should have let you know it might heal more slowly than normal.
Bisphosphonates come with a large range of tough side effects; balancing their usefulness in combating osteoporosis definitely needs to be balanced against those tough side effects. I hope you're finally beginning to feel better, now that you've been off it for a few months... Good luck - PJH
I have looked up research by the American Dental Association. They have found that bisphosphonate/alendronate/alendronic acid/Fosamax increases bone density but it causes the bones to be more brittle. Bisphosphonate prevents old bone cells being lost as quickly so it thickens the bones but this does not allow new bone cells to form when they should. You are left with brittle bones, This can actually cause fractures.
I think it is much better to take a really good quality calcium supplement which also contains manganes, zinc, vitamin K etc as well as vitamin D. These additional minerals and vitamins help the calcium to be absorbed by the bone cells.
Bisphosphonate is closely related to the yellow phosphorous that caused the awful "phossy jaw" suffered by the match girls from about 1850 until 1906 in the UK - when it was banned. "Phossy jaw" is another name for osteonecrosis of the jaw ONJ also known as bone death.
Everyone: Please read the book by Gillian Sanson: The Myth of Osteoporosis. You don't have to accept everything in it, but please be open to the implications of the vast research material she is exposing. Having done my own research from several sources, I have come to believe that we do NOT need or want bisphosphonates, ever. The pharmaceutical companies are making billions pushing dangerous drugs with less proven effectiveness than their ads imply, when countless statistics show clearly that many controllable factors are MORE significant in reducing fractures. Do your own research and make your own decision. Don't be bullied by your doctor (mine was completely open to hearing about this, it turned out. It was new information to him, and he's taking it seriously), or by anyone else. And be wary of anyone who tells you to ignore label warnings... Be well.
Thanks, Linda. I think eventually bisphosphonates will come to be seen as a barbaric way of trating osteoporosis. Until then, they do seem to help many of those who take them, as far as bone loss - though at what cost, we don't know. I appreciate the information you've offered here; and I hope many readers take you up on your challenge to do the research, read the books, discuss with the doctor, and take charge of their health. PJH
Featuring Content From:
By using this service, you accept our Terms of Use. Please read them. The consumer health information on is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions. You should promptly seek professional medical care if you have any concern about your health, and you should always consult your physician before starting a fitness regimen. Copyright © 2013 Remedy Health Media, LLC. All Rights Reserved.
Common Questions About Gaucher Disease 
Six Facts About Gaucher Disease 
Top Food Sources for Calcium 
I needed a tooth pulled but because I was on Actenol I had to go on a actenol vacation 3 months before pulling the tooth and 3 months after the pullling because it could cause bone death and you could lose your jaw....I have osteopenia but will not go back on this dangerous medicine.....Mary
I had a major fall that resulted in the need for two teeth being extracted! Neither my oral surgeon (who is also an MD) nor my Internist EVER TOLD ME TO GO OFF OF ACTONEL!
Actonel has saved me from osteoporosis and the "horrible hump" I've NEVER heard of it causeing bone death in my life, nor has any physician mentioned this to me...........I've worked in healthcare all of my life........and going off Actonel for the extraction of one tooth for six months seems a bit of overkill!
I'd look for a new oral surgeon! That's the problem with the FDA........if you read closely enough ANY drug can cause death...................
Kathleen..Please read more about the dangers of bone death which is called BRON-J..It had surfaced in 2004 and it is being looked at now because of the side effects if you have a tooth pulled.implants, and root canals...It is real...
I went to a very good oral surgeon and he called my PCP and my dentist and they all agreed to take an actenol vacation......Mary