23rd October 2006
Hi Annieve: I had almost the same side effects on Actonel, and due to other med probs I had to stop and start it several times. The first time I was on it for a little over a year, I had the stomach and bone pain reactions. I remained on it because it didn't know what else to do. However for me the bone pain went away within several days of stopping it, the stomach probs didn't, but I have other things causing that, so I can't say it was the Actonel alone that did it.
The type of pain that I had was an out of the blue horrific stapping pains that were extremely startling, but they always went away 'each time' after a few minutes and then would return several times every hour, as long as I remained on it.
I'm no longer taking it, and am on Forteo with NO probs. but unlike you the Actonel pain went away days after stopping it. I also have periodontal disease, and didn't want to push my luck with the possibility of osteonecrosis of the jaw, even though I felt that eventuality was very slight. ONJ can be looked up and you'll see that "most" people got it from iv infused fosamax, boniva, aredia, etc which is the same class of drug as actonel and it occured mainly in cancer/steriod/chemo use patients. I have been told that Actonel if suppose to be the easiet on your system, but take that with a grain of salt, since we are all different. Luckily I had most of my dental work done years before I started it. Major stomach/swallowing problems among other things, like bone pain are listed on Actonel's rx insert, so these probs are well known and mentioned by the drug co.
Both Miacalcin nasal spray and Forteo are other options for drugs that aren't bisphosphonates, which you might be able to tolerate. The Forteo I'm using has already shown improvements when they checked me after 4 mos use, I'm now at 6 mos. If you get to a med that you can tolerate, you don't have to wait for a dexa to see if it's working. Just ask the doc to do a urine NTX test (n-telopeptide) which can check on various bone markers that may be creating bone turnover.
One more thing there are many post's on this board about this very topic, so you might want to read the threads, because everyone has similar and different stories. You may have to go back a couple of pages or more to read them all, but I think this has been discussed all the way back to the oldest threads you'll find on this board several years ago.
Good Luck with this, I know how you feel...
The type of pain that I had was an out of the blue horrific stapping pains that were extremely startling, but they always went away 'each time' after a few minutes and then would return several times every hour, as long as I remained on it.
I'm no longer taking it, and am on Forteo with NO probs. but unlike you the Actonel pain went away days after stopping it. I also have periodontal disease, and didn't want to push my luck with the possibility of osteonecrosis of the jaw, even though I felt that eventuality was very slight. ONJ can be looked up and you'll see that "most" people got it from iv infused fosamax, boniva, aredia, etc which is the same class of drug as actonel and it occured mainly in cancer/steriod/chemo use patients. I have been told that Actonel if suppose to be the easiet on your system, but take that with a grain of salt, since we are all different. Luckily I had most of my dental work done years before I started it. Major stomach/swallowing problems among other things, like bone pain are listed on Actonel's rx insert, so these probs are well known and mentioned by the drug co.
Both Miacalcin nasal spray and Forteo are other options for drugs that aren't bisphosphonates, which you might be able to tolerate. The Forteo I'm using has already shown improvements when they checked me after 4 mos use, I'm now at 6 mos. If you get to a med that you can tolerate, you don't have to wait for a dexa to see if it's working. Just ask the doc to do a urine NTX test (n-telopeptide) which can check on various bone markers that may be creating bone turnover.
One more thing there are many post's on this board about this very topic, so you might want to read the threads, because everyone has similar and different stories. You may have to go back a couple of pages or more to read them all, but I think this has been discussed all the way back to the oldest threads you'll find on this board several years ago.
Good Luck with this, I know how you feel...