Ellen58
01-25-2002, 11:55 AM
Hello,
I'm new to this board and I'm seeking information
about Actonel BEFORE I start taking it. My doctor pre-
scribed 30 mg. once a week. I had not even heard of
Actonel and would like to know more about its side effects throughout the country...is it causing a lot of
serious problems overall? I would appreciate any com-
ments from those of you who are taking this drug and
from those who are knowledgeable about its overall performance.
Thank you.
I'm new to this board and I'm seeking information
about Actonel BEFORE I start taking it. My doctor pre-
scribed 30 mg. once a week. I had not even heard of
Actonel and would like to know more about its side effects throughout the country...is it causing a lot of
serious problems overall? I would appreciate any com-
ments from those of you who are taking this drug and
from those who are knowledgeable about its overall performance.
Thank you.
Sponsor
bjg
01-25-2002, 01:58 PM
THIS IS WHAT I KNOW ABOUT ACTONEL..IT IS MADE BY PROCT OR & GAMBLE..THEIR TOLL FREE NMBR IS 800-836-0658.IF YOU CALL THEM THEY CAN TELL YOU WHAT THE DOCUMENTED SIDE EFFECTS ARE,OR YOU CAN LOOK THEM UP ON THEIR WEB SITE.I DO KNOW THAT BEFORE YOU START TAKING ACTONEL YOU SHOULD HAVE A BLOOD TEST TO CHECK FOR LOW SERUM CALCIUM..I TOOK IT BRIEFLY THIS PAST SUMMER, AND HAD TO STOP. WHEN I TOOK EITHER FOSAMAX OR ACTONEL I HAD URINARY PROBLEMS,WHICH I REPORTED TO THE MANUFACTURER OF BOTH DRUGS. I HAVE BEEN SEARCHING THE BOARDS TO SEE IF ANY ELSE HAD URINARY PROBLEMS ON EITHER DRUG..BUT HAVE FOUND ONLY A FEW PEOPLE REPORT THAT THEY HAD SIMILAR PROBLEMS...THE SIDE EFFECTS THAT I HAVE SEEN DOCUMENTED IN LITERATURE FOR ACTONEL ARE..UPSET STOMACH,ABDOMINAL PAIN,CONSTIPATION,DIARRHEA,GAS,HEADACHE. MORE SERIOUS SIDE EFFECTS ARE DIFFICULTY SWALLOWING,CHEST PAIN,OR SEVERE HEARTBURN..IF YOU HAVE ANY OF THESE YOU SHOULD STOP TAKING ACTONEL IMMEDIATELY.......GOOD LUCK
Ellen58
01-27-2002, 12:25 PM
Thanks for the response from bjg the Junior Member regarding my request for info about Actonel BEFORE taking it. My doctor did NOT do any bloodwork to check for low serum calcium which does upset me. Also, when I asked him about side effects he said that there are none. Well, I knew better than that. There's always
side effects for someone. I'm disappointed in my doctor. I will postpone taking Actonel until I feel comfortable with doing so. Will also call Proctor & Gamble to get the documented results on side effects.
Isn't it a shame that we can't accept our doctor's word
for things when we are paying them for their advice!
side effects for someone. I'm disappointed in my doctor. I will postpone taking Actonel until I feel comfortable with doing so. Will also call Proctor & Gamble to get the documented results on side effects.
Isn't it a shame that we can't accept our doctor's word
for things when we are paying them for their advice!
bjg
01-27-2002, 06:37 PM
GLAD I COULD HELP..I GUESS THERE ARE 2 DIFFERENT SCHOOLS OF THOUGHT ON TAKING MEDS..I LIKE TO BE INFORMED AND KNOW WHAT I AM PUTTING MYSELF AT RISK FOR SIDE EFFECT WISE.THE DOWN SIDE OF THAT OFCOURSE IS THAT IM SURE THERE ARE TIMES WHEN I DONT TAKE SOMETHING FEARING THE SIDE EFECTS THAT MITE DO ME LOTS OF GOOD....BUT I HAVE A FRIEND WHO GOES TO THE DR..AND WHEN HE TELLS HER TO TAKE A CERTAIN RX ..SHE DOES..AND SHE SAYS SHE DONT ASK AND DONT WANT TO KNOW ABOUT THE POSSIBLE SIDE EFFECTS...SAYS IT MITE SORT OF PSYCHE HER OUT AND SHE COULD BE WORRYING AND NOT TAKING THE DRUG FOR NOTHING..SINCE NOT EVERYONE HAS SIDE EFFECTS...HER THEORY IS WHAT YOU DONT KNOW WONT HURT YOU...GOOD LUCK WITH WHATEVER YOU DECIDE ABOUT THE ACTONEL
NancyH
02-07-2002, 02:00 AM
I've been taking actenol for a year now and so far so good. Actually I played with it on and off as I was scared of the side effects but since I have severe bone loss I stopped playing and got down to business. My Dr said that the side effects were mild compared to the debilitating condition osteo can produce, that scared me to be more serious. I checked it out and found the side effects were sometimes bothersome and eventually fade but not always. I guess trying it is the only way to find out.
Ellen58
02-07-2002, 10:19 AM
Thank you Nancy for sharing your experience. I'm
58 and was told that I have severe osteo also. Hearing
this naturally scares one but I do hate that the Dexa
scan is the only method of measuring this. I have read
that the Dexa does not measure such things as the microarchitecture of one's bones so how do I know that the Dexa results are something that I should take too seriously. One just doesn't really know what course to take. Did your doctor do any bloodwork to check for
low serum calcium before you started taking it? Also how many mg. are you taking?
58 and was told that I have severe osteo also. Hearing
this naturally scares one but I do hate that the Dexa
scan is the only method of measuring this. I have read
that the Dexa does not measure such things as the microarchitecture of one's bones so how do I know that the Dexa results are something that I should take too seriously. One just doesn't really know what course to take. Did your doctor do any bloodwork to check for
low serum calcium before you started taking it? Also how many mg. are you taking?
TCML355
02-08-2002, 11:59 PM
I've been on Actonel for about three weeks now. Have had a little discomfort with stomach pain but, I had an inflamed stomach prior to taking this med. I tried a couple of meds. Fosamax and Miacalcin. Had bad reaction to fosamax. Didn't have a problem with Miacalcin but Dr. felt that this med. does very little and wanted me on Actonel.
I did take a blood test and urine test just last week. To be honest I'm not sure why the Dr. wanted this, but I will get back to you as to the why and the results.
Terri
I did take a blood test and urine test just last week. To be honest I'm not sure why the Dr. wanted this, but I will get back to you as to the why and the results.
Terri
Ellen58
02-09-2002, 02:56 PM
Terri,
Thanks for your reply. How many mg. of Actonel are you taking? I did call the 1-800 # for Proctor & Gamble and talked with a pharmacist just the other day.
She told me that they are studying the 30 mg. dose now.
That made me feel as if I would be a guinea pig if I take that dosage.
I know that some drugs are very helpful to us but
some can cause great damage too. Actonel was FDA approved in 1998, I believe, so to me that's still new and makes me even more concerned about taking it right now. Would like to have more information as to the number of serious side effects it is causing. I took Fosamax twice, a lower dosage the second time, and experienced tightening or squeezing in my chest both times.
I'm in a unique situation too and that's why I'm so concerned about taking this new drug right now. My husband is totally disabled and I am his primary caregiver 24/7. I feel good now with no serious health problems and I don't want to invite trouble to a situation that is already hard. I would like to hear back from you.
Thanks for your reply. How many mg. of Actonel are you taking? I did call the 1-800 # for Proctor & Gamble and talked with a pharmacist just the other day.
She told me that they are studying the 30 mg. dose now.
That made me feel as if I would be a guinea pig if I take that dosage.
I know that some drugs are very helpful to us but
some can cause great damage too. Actonel was FDA approved in 1998, I believe, so to me that's still new and makes me even more concerned about taking it right now. Would like to have more information as to the number of serious side effects it is causing. I took Fosamax twice, a lower dosage the second time, and experienced tightening or squeezing in my chest both times.
I'm in a unique situation too and that's why I'm so concerned about taking this new drug right now. My husband is totally disabled and I am his primary caregiver 24/7. I feel good now with no serious health problems and I don't want to invite trouble to a situation that is already hard. I would like to hear back from you.
TCML355
02-10-2002, 12:21 AM
Hi Ellen,
I am taking 5 mgs. of Actonel daily. After my bad experience with fosamax, which I was taking 70 mgs. a week, I prefer sticking to a lesser amount daily of Actonel and hope that I won't have the stomach problems etc. that I had on fosamax. I agree Actonel is relatively new, but since I have severe osteoporosis feel I have to give it a try. My Dr. said I should get back to him if stomach pain increases and we will try something else. Truthfully the only med. I haven't tried that I know of is Evista.
Will keep in touch,
Terri
I am taking 5 mgs. of Actonel daily. After my bad experience with fosamax, which I was taking 70 mgs. a week, I prefer sticking to a lesser amount daily of Actonel and hope that I won't have the stomach problems etc. that I had on fosamax. I agree Actonel is relatively new, but since I have severe osteoporosis feel I have to give it a try. My Dr. said I should get back to him if stomach pain increases and we will try something else. Truthfully the only med. I haven't tried that I know of is Evista.
Will keep in touch,
Terri
NancyH
02-17-2002, 10:46 PM
Ellen58. Yes my Dr did check for low serum calcium, they do that to see if there is other reasons for the bone loss and how your body uses calcium. Mine was fine. I take 30mg once a week and believe me I am very paranoid of drugs or results of tests. I asked for my results and took them to an independant radiologist/rhumatologist and tests were as bad as the Dr said. I have been taking actenol for a short time so the side effects haven't manifested yet, I also have pernicious anemia which gives me severe stomach problems and I always assume anything new will upset the balance. You will find that there is always a margin of error but rarely in bone scans and as for bone structure it is very easy to see the difference, the radiologist pointed out to me normal versus bone abnormality.
Ellen58
02-18-2002, 10:27 AM
Nancy,
Thanks for your reply. Sounds like you're like I am in regard to taking a new drug. I'm still undecided as what to do about taking the 30 mg. dose of Actonel once a week. I may be damned if I do and I may be damned if I don't. Scary, isn't it? Please post if you have any problems and if I decide to take it I will post also.
Thanks again,
Ellen
Thanks for your reply. Sounds like you're like I am in regard to taking a new drug. I'm still undecided as what to do about taking the 30 mg. dose of Actonel once a week. I may be damned if I do and I may be damned if I don't. Scary, isn't it? Please post if you have any problems and if I decide to take it I will post also.
Thanks again,
Ellen
NancyH
03-11-2002, 09:57 PM
Sorry it took so long to get back but I had a new grandchild so been busy with the new arrival. Anyway my Dr did do the serum level and other blood workup before he prescribed anything. Have you decided to start taking it yet? I also eat a high calcium diet and exercise 5 times a week on the treadmill.
Ellen58
03-12-2002, 10:47 AM
Hi Nancy,
Congratulations on the new grandchild! Is it a boy or a girl and is this the first one? Our adult child is 27 and not married so we don't have any grandchildren.
I have not started taking the Actonel yet. I do wonder from time to time if I am doing the right thing or not. I take calcium supplements and exercise four times a week. I'm 58 but worry about taking it for the rest of my life which I assume would be the case. I sometimes think that a problem with the esophagus would
be as bad for me as the osteo. Sure wish I could see into the future, don't you? Then we'd know for sure what to do!! My husband is totally disabled and has been now for a little over three years. That makes these decisions even harder for me.
Thanks for responding to my previous post. Let me hear from you again.
Congratulations on the new grandchild! Is it a boy or a girl and is this the first one? Our adult child is 27 and not married so we don't have any grandchildren.
I have not started taking the Actonel yet. I do wonder from time to time if I am doing the right thing or not. I take calcium supplements and exercise four times a week. I'm 58 but worry about taking it for the rest of my life which I assume would be the case. I sometimes think that a problem with the esophagus would
be as bad for me as the osteo. Sure wish I could see into the future, don't you? Then we'd know for sure what to do!! My husband is totally disabled and has been now for a little over three years. That makes these decisions even harder for me.
Thanks for responding to my previous post. Let me hear from you again.
NancyH
03-18-2002, 02:57 AM
Hi Ellen58, our newest was a boy, this is my 4th grandchild(I also have 4 step grandchildren)and hopefully the last. My daughter and husband 6yr old and the new baby live with us right now, it is so trying but also rewarding in some ways. I just turned 54 and I still get wishy washy with my actenol, I'm always thinking I can slow the process down with a high clacium intake so sometimes I miss a dose. Mine is most severe in the hips and lumbar and thorasic. I figure that exercise and nutrition has to help as much as the drugs(IMHO)but then I hate to take pills. I even drink my vit/min whenever I can. I guess with your hubby being disabled you may wish to look at the alternative to NOT taking care of this. As osteo progresses you may suffer from minor hairline fractures of the vertebrae and NOT even know it, everyone gets a backache now and then right? Most of them you won't even feel. If you get enough of those fractures your back will start to develope that widows hump on the upper back(you've seen little old ladies with that right?)I forgot the medical term for it tho. From there it gets even more debilatating, my grandmother lived in a fetal position from the age of 63 to 66 before she died, everytime she moved she broke a bone. So how well can you care for hubby from a wheelchair or the bed? Something to think about ok?
Ellen58
03-18-2002, 09:37 AM
Hi Nancy,
It was good to hear from you again. You certainly do have a full house with two children and two other adults but I'm sure it has its good and bad aspects. I still can't decide about the Actonel. I do back strengthening exercises and although osteo runs in my family, not one of them had any problems with it. That sure was a sad situation with your grandmother. I just don't know what to do. I don't like the thoughts of taking such a potent med. for many years and yet the thoughts of possibly being debilitated are scary too.
Ellen
P.S. I don't recall having a backache in a lonnnggg time.
It was good to hear from you again. You certainly do have a full house with two children and two other adults but I'm sure it has its good and bad aspects. I still can't decide about the Actonel. I do back strengthening exercises and although osteo runs in my family, not one of them had any problems with it. That sure was a sad situation with your grandmother. I just don't know what to do. I don't like the thoughts of taking such a potent med. for many years and yet the thoughts of possibly being debilitated are scary too.
Ellen
P.S. I don't recall having a backache in a lonnnggg time.
NancyH
03-19-2002, 01:03 AM
Ellen58, you are as paranoid as I am about meds, I thought I was the only person in the world who stuck her nose up in the air when it came to taking meds. I also have anxiety disorder and it is a challenge to take my anxiety pill (xanax) and I take it only when very necessary or at night. I wouldn't take it for the first year just kept telling the Dr I was, but I got a real bad panic attack and in desperation took the pill, relief and never any side effects so to me it is a safe drug, I've taken the same dose for over 10 yrs, I'm more psychologically dependant than physical I'm sure. I also give myself b-12 shots every two weeks and that was a must since I have pernicious anemia, I am now plagued with neuropathy and short term memory problems from this disease not getting caught in time. So I to hate the fact of long term drugs, unfortunately if I wasn't getting the b-12 injections I'd end up in the mental insti with dementia (which is the end result)so there are times I've had to concede to the medical profession. You just keep reading everything on osteo pro and con. It's your decision and who knows maybe in time you'll decide it's not such a bad pill to swallow when you consider the alternative. My grandmother was a frail woman anyway and in the back of my brain(I still have some of it left I think Lol)I tell myself that this is the 21 century and the technology and the information hiway there is all kinds of ways to care for one self. I mean, who am I to talk, the one who skips the pill on days I think I've consumed enough calcium by my diet only? Heck, my hubby has had 3 heart attacks and one quadruple bypass, do you think he has changed anything? Nada, he hates drugs and he still smokes, what can be done? Nothing, he wants to live his life doing what he likes to do and no drug is going to get in his way. This is an engineer who thinks things out to their logical conclusion. Whether he stops smoking or not, he is going to die from heart disease so enjoy while you can as he says and he is doing just that.
Ellen58
03-20-2002, 10:53 AM
Hi Nancy,
My husband had quadruple bypass surgery in October, 1998 and two strokes followed leaving him as he is today...totally disabled. He can't walk or use his left hand/arm but his speech wasn't affected and neither was his thinking. It has been a helluva 3+ years.
I do take a small dosage of Paxil, an antidepressant, to help prevent severe depression from my caregiving role. I also take glucosomine chondroitin for my arthritis, calcium supplements and
a multi-vitamin daily. I too concede to the medical profession at times because medications sometimes are helpful. It just seems to me that Actonel (and Fosamax) are such potent drugs. I can't help but wonder what years of taking either of them will do to someone. I think it boils down to deciding which of the two risks I want to take...severe osteo or esophagus problems. Neither one sounds exciting. I also look at my family history and none of them had problems with their osteo but I do realize that I could be the unlucky one. Oh, these decisions! I really don't know what to do in this case. Just wish that Actonel had been on the market longer. Sure hope that my back exercises are helping...probably should add some abdominal ones as well.
One more thing, my doctor encouraged me to take Fosamax several years ago which I did but had to stop taking because I had tightening in my chest. When I was in his office the other day and he was talking about the Actonel, he and his nurse told me that there were a lot of problems with Fosamax. Think they said it was causing a lot of burning sensation (can't remember for sure right now) but anyway I got the impression that now Actonel was THE drug to be taking and that Fosamax had not worked that well overall. He told me the other day that I would thank him someday for the Actonel but that was the exact same thing he told me when he recommended Fosamax!
Then my gynecologist wants me to take hormones...doesn't really pressure me but mentions it everytime I go in. BUT I won't agree to that either at this time. I have an aunt and a friend who were taking them and they both have breast cancer. In fact, my aunt's cancer has recently spread to her liver and she will most likely die from this in the not too distant future. Think it just boils down to making a decision for or against taking drugs and being willing to take whatever happens either way.
Gee, I didn't mean for this to be so lengthy but I enjoy corresponding with you. Hope you are having many pleasant moments.
Ellen
My husband had quadruple bypass surgery in October, 1998 and two strokes followed leaving him as he is today...totally disabled. He can't walk or use his left hand/arm but his speech wasn't affected and neither was his thinking. It has been a helluva 3+ years.
I do take a small dosage of Paxil, an antidepressant, to help prevent severe depression from my caregiving role. I also take glucosomine chondroitin for my arthritis, calcium supplements and
a multi-vitamin daily. I too concede to the medical profession at times because medications sometimes are helpful. It just seems to me that Actonel (and Fosamax) are such potent drugs. I can't help but wonder what years of taking either of them will do to someone. I think it boils down to deciding which of the two risks I want to take...severe osteo or esophagus problems. Neither one sounds exciting. I also look at my family history and none of them had problems with their osteo but I do realize that I could be the unlucky one. Oh, these decisions! I really don't know what to do in this case. Just wish that Actonel had been on the market longer. Sure hope that my back exercises are helping...probably should add some abdominal ones as well.
One more thing, my doctor encouraged me to take Fosamax several years ago which I did but had to stop taking because I had tightening in my chest. When I was in his office the other day and he was talking about the Actonel, he and his nurse told me that there were a lot of problems with Fosamax. Think they said it was causing a lot of burning sensation (can't remember for sure right now) but anyway I got the impression that now Actonel was THE drug to be taking and that Fosamax had not worked that well overall. He told me the other day that I would thank him someday for the Actonel but that was the exact same thing he told me when he recommended Fosamax!
Then my gynecologist wants me to take hormones...doesn't really pressure me but mentions it everytime I go in. BUT I won't agree to that either at this time. I have an aunt and a friend who were taking them and they both have breast cancer. In fact, my aunt's cancer has recently spread to her liver and she will most likely die from this in the not too distant future. Think it just boils down to making a decision for or against taking drugs and being willing to take whatever happens either way.
Gee, I didn't mean for this to be so lengthy but I enjoy corresponding with you. Hope you are having many pleasant moments.
Ellen
NancyH
03-21-2002, 02:36 AM
Hey Ellen I refused HRT also, in '96 I had a precancerous tumor removed from my left breast(a lump the size of a apricot that both Drs and myself could not feel with the hand)it was deep in the chest wall. I alwasy felt that those hormones had too many side effects I didn't want to deal with. I also felt I could go through menopause without it and I was lucky to have been able to do so. Then I kept getting this letter from the hospital that did the surgery about my possiblly starting on tamoxafin(sp)as I am a high risk for breast cancer and I just kept thinking what if they discover that this drug has even more dangerous side effects so I would never answer them, well I'm glad I didn't, look at the hoopla going on with it now. So I do know where your head is at with drugs(same place as mine)My osteo Dr wanted me to get on celebrex or vioxx for the arthritis in my spine but I kept putting him off(felt I could live with it)and sure enough heart attacks associated with both these drugs. I figure if the drug has been on the market at least 10 yrs, we know a little more about what it can or cannot do and I'm more apt to try it. the drug companies want our Drs to give out these new drug samples and prescriptions convincing our Drs they work better than the older ones when in reality most of the time it is more money in their pockets(drug co)and some of those old tried and true ones work even better than the new ones. Drs fall prey to being the pharmacueticl co salesmen as they know very little about drugs themselves. Boy can I ramble to, we are alike there as well. I probably am wishy washy with my actenol for the same reason, "what if a year down the read they find actenol causes bone tumors or something" Always in the back of my mind....