I have moderate Osteoporosis . It is probably caused by an early hysterectomy plus chemotherapy for breast cancer forcing an early menopause. Three years ago I was diagnosed with Osteoporosis and was initialy put on evista . Within weeks I was getting such bad leg cramps every night the doc took me off pills immediately and I was put on fosamax. After a while I noticed my hair was falling out quite badly and it worried me every time I washed my hair as I would have to sweep up the bathroom floor but I put it down to lack of hormones due to all my previous treatment. Around the same time I supposedly contracted an ear virus that gave me intermittent dizzy spells. This went after a while but returned every few months, also I had blurred vision. As my eysight was not A1 anyway I put this down to age deterioration. I took fosamax for about 18 months and then as I was getting a lot of heartburn my doc thought that I would be better on actonel. I started taking it about 12 months ago. My hair loss still continued but I had grown accustomed to having a permanent 'bad hair day' and constant vaccuming the bathroom floor. I was still getting the dizzy spells but added to these I was also getting heart palpitations, sometimes bad enough to stop me in my tracks plus my eyesight was still blurred. All this got me down so much that I first went to have my eyes tested and was told that it was due to age deterioration and would get worse until I was about 65 and then it would probably stay the same. I also complained to my doc who was fed up with having me as a constant patient ,about the palpitations and the dizzy spells. ( I have never got around to complaining about the hair loss) . She was so obviously annoyed with seeing me that she sent me first to a hearing specialist , who in turn sent me for a brain scan as he thought it could be a tumour behing my ear. Of course nothing showed up and he also gave me the old thingy about age deterioration. I went for a heart test also and there was nothing to show on this side either. I think I ended up feeling that I was wasting valuable medical time that could be given to the really sick. My doctor in the meantime was so fed up with me that we had a few angry words as she said that 'of course it was all my menopause' and I would just have to put up with it. Then one day I found this page and started reading about other ways of helping this disease rather than taking pills. Six weeks ago I decided to stop taking and osteoporosis pills and within one month my hair loss has completely stopped and my hair is a lot healthier looking. I havent had any more dizzy spells or heart palpitations and my hearing is a lot better. I have noticed within the last week that my eyesight is rapidly improving. I am amazed that just taking these pills could have caused me to have such an uncomfortable life . I havent told my doctor yet that I have stopped taking the pills as I know she will not agree with me on the side effects I was suffering but I feel that I have to take matters into my own hands. The only thing is , will I suffer in the long run. I am trying to adjust my diet and would appreciate any help on this matter. I have increased my calcium intake with food but I dont want to take any calcium pills. Some of you seem to be into the green veg juice , are there any recipes out there you could share. I have started walking more than I was doing before. I forgot to mention that at the end of my list of side effects was a bloated stomach and some weight gain. My stomach is going down and so is my weight but very slowly. Sorry to list so much but no-one else seems to have mentioned most of the side effects that I was having and I was wondering if maybe people are having these side effects but like me just dont realise and think that they are just part of life. By the way I am 55 which made me 52 when I was diagnosed.
i think it is a good idea to report any side effects that you have that are not listed on the drug literature to the drug co that manufactures the drug..they cant work to eliminate the problem unless we tell them what we are encountering......if you have not tried os cal maybe you should think about it..i take 2 tablets daily because its hard to get enough calcium food..just be sure to drink lots of water..i am also on evista..because actonel and fosamax caused me urinary problems..i am not thrilled with the idea of having to take any drug.....i fear the blood clot thing..but so far the only real side effect i seem to have is very vivid distrubing dreams..which is not a known side effect but one that i did report to lily..but with osteopenia or osteoperosis i think it is sometimes too easy for us to chose not to take the meds..because at this point for lots of us we are asymptomatic...however..remember that left un or under treated we will most likely suffer debilitating fractures..
I also have lost 12 lbs in a short time. It seems as if a small amt of food fills me& I can't eat more. I read that osteo causes your stomach to shrink& you get this feeling of fullness.It has something to do w/ the thoracic area if i recall correctly. I now eat many small meals.
My situation sounds a great deal like yours. I have a lot of the same symptoms caused from both Fosamax and Actonel (35mg wkly). I took Fosamax for 2-1/2 yrs, started having problems w/throat & Rhumatologist wanted me to try Actonel daily. Then it became availabe in a wkly 30mgs., now 35 mgs. Well, from the start I told him I was gaining a lot of weight, laughed at me and said age, metabolism, etc. Also noticed my hair was thinning a lot, started having a lot of IBS type symptoms, diahhrea. Now after taking this Actonel 35mgs. my hair is REALLY falling out & my weight is up from 110 to 125, of course I'm a small framed person w/thin bones & have only weighed 100-110 for many years, had four kids & never weighed this much. My question for input is something that is haunting me. If I do not take this "stuff" for bone building, will I be sorry in 5-10 years (I'm 65 now, don't feel it or act it ho ho) after I break a hip? Or, will the FDA or AMA come out w/updated studies and say "GET OFF ANY BONE BUILDING MEDS", they are causing A thru Z problems w/liver/kidney function, heart etc????? I would probably feel more safe taking the 1500 mgs. calcium & try to get more exercise. I used to walk daily & ate all the right foods & did all the right things & still I am osteoperatic very bad!!!. My mother had it also, so genetics play the biggest role, I believe. I still try to eat healthy (somewhat, I love sweets). So, at any rate, just wanted to give my 2 cents worth on this subject, I'm seeing the symptoms of hair loss, weight gain, no energy, increased heart arrythymias (I already take beta blockers for heart PAC's & PVC's) & jut generally not feeling like myself. Any input or suggestions appreciated. What can we offer eachother? The Dr's are telling us we need to build bones & it's up to each of us to do what WE feel best for ourselves. Look what happened w/HRT, now everyone who took it for a few years are probably switching to Fosamax or Acontel. What a deal huh? Are you as confused as I am?
Thanks to all of you on this thread for expressing your experiences with Osteoporosis tratment. Since I've just stopped taking Fosamax all of your comments are of particular interest to me.
I took Fosamax for 13 weeks because my doctor recommended that I should be on one of the drugs. I have osteopenia in my femur, T -1.3 and after my DEXA Scan my ob-gyn called and talked like this was just awful. My spine is good +1.04. I am 55.
While on Fosamax I was having a lot of the symptoms you all are talking about here - heartburn mostly and some pin prickly feelings in my eyes with blurred vision. I've been off of the once weekly Fosamax (70Mg) for 4 weeks and my vision has certainly improved, but I'm having to take antacids to resolve my sporatic heartburn problem still. I've lost some weight also which I really don't think is good because I'm thin and tall (risk factors of osteoporosis.) I have read several times from various doctors on the net that my numbers are not bad enough to treat with drugs like Fosamax, Actonel or Evista. Does anyone have any insights on this issue?
Right now I'm still trying to decide what to do. I have walked 4 miles per day for 14 years and take Calcium (I do not take estrogen, however.) I think, I'm better off treating bone loss with a natural approach rather than burning my insides out with Fosamax. But I'm also another one who is not wanting to be sorry later in life. Tough decision!
Am looking for more response to my post re:hair loss and weight gain. I have had hair loss since starting Fosamax & this a.m. after showering, the tub had a ring only IT WAS MY HAIR, I was so shocked. Hair loss seems much worse since going on Actonel 35mgs. wkly. for about 8 weeks now. Fosamax is made by Merck & Co, Inc. Actonel by Proctor/Gamble. It's the b..something chemical in all this Fosamax,Actonel, Dedrinate stuff that gives the side effects. The primary one is, of course, esophagel problems, heart burn, stomach burning etc. Mine seems to be hair/weight. I recently had a blood work-up, no thyroid problem so what else can I blame this this incidence on,if not the bone building agent in Fosamax & Actonel? Anyone else with similiar symptoms, please reply. Each of us are unique and what bothers one may not another. Any resonse appreciated. Thanks
i am seeing some hairloss myself..i thought it was caused by the evista i take for my osteopenia..but stopping the evista for a month didnt stop the hairloss..i have been to my internist and a dermatologist...i am told that hair loss in post menopausal women is common...caused by the drop in estrogen production...it somehow causes the hair follicle to shrink which allows it to fall out ...the dr suggested that i try rogaine.....i am going to an endocronologist in a couple of weeks for a third opinion.. i have just had blood work done and it was all ok..i may consider rogaine myself if the hair loss continues...
When I first wrote this article I had only recently stopped Actonel. I am still improving in myself and I can now see where my hair is growing back and getting thicker. None of my other symptoms ( side effects) have returned so I am still convinced they were caused by these drugs. I went before Christmas to my female doctor , who in many ways was sympathetic but very non commital. I explained to her why I did not want to continue on these medications . She said to me that it is the patients right to refuse medication even if it was beneficial. I told her all my side effects and she only kept saying ' well it could be' but I dont think she was convinced. She said that probably diet could help slow the loss but only very slightly but it would not prevent bone loss. She also said that calcium supplements were not beneficial in a big way . Walking she said was the only thing that had been a proven success but still in a small way. The outcome was that she said that I would still continue to lose bone if I didnt take any medications. We agreed eventualy that I would continue as I am at the present ,( trying to eat a reasonable amount of calcium plus adequate walking ) until I have my next bone scan in about 14 months time and see what my level is then.
Maranui: I have two doctors with whom I consult regarding my osteopenia treatment (my ob-gyn and endocrinologist.) They often give me conflicting advise and I think that some of these issues are impossible to address because there is so much doctors and the general public DO NOT know regarding osteo drugs because they are still so new. I know my body and if I have a new symptom (of which I DID with Fosamax treatment) then I have to pay attention to it. I think I know my body better than anyone else.
I had about 5 pounds of water weight gain which quickly went away when I stopped Fosamax. I did not have significant hair loss that I could tell because I usually go through spells of loss (usually in the fall months) then it stops. I was the most bothered by heartburn as I stated in one of my earlier posts. It is slowly resolving since I abstained drug therapy. And then these strange sensations with my eyes and blurred vision. I am trying to combat bone loss with diet and exercise and supplements and I think I'll be much better off for it but time will tell. For me the jury is still out whether I'll try another type of therapy or not. I think I will wait until my next DEXA in April before I make the decision.
I'm in the same boat as everyone else on this board; osteopenia; refuse to take drugs; prefer the natural route with good food & exercise, yadda, yadda yadda! What irks me is that the medical (& pharmaceutal) community are telling us that the process of getting older is like some sort of disease and that we have to "treat it"! I had a lot of hair loss when I started menopause in my 50s and I wasn't taking ANY drugs at the time; so it might be part of the menopause process. However, I would also suspect whatever drug you might have taken to possibly have caused the loss. Now in my mid-60s and my hair still has its natural color and thick again! I've chosen to let nature take its course, with the help of exercise, no junk food, no drugs, taking calcium supplements and a cheerful outlook on life (sometimes that's hard to do LOL).
I'm only 35 & I have osteoporosis in all areas
due to anoerxia(for 15 years) & genetics(my
grandma & aunts all had dowagers humps).
My gyn wanted me to go on Actonel but after
reading all these posts, I thank God I didn't.
(I'm already on drugs for ocd/hyponchondria!)
No fractures yet but I feel like a ticking
time bomb! What to do besides exercise, calcium,
eating better, ect. Is there any hope out there??
Perhaps if enough people complained to the pharmacuetical cos & dtrs, maybe they could develope
safer drugs...if there is such a thing??
Osteo is going to be a gigantic problem in the very near future with more & more elderly. Rallies,
marches, congress, AARP...people everywhere should
speak up!! All the pharmacists & dtrs tell you is
"follow directions" & that "one out of a thousand
people have problems..."
From reading these posts, it seems more like 1 out of 2
Best of luck & God bless you all!
Have you read or thought about the oseo drug that you spray in your nose? It's Cal something salmon. It's easier on your system& helps, esp. w/ pain from fractures. It' a big help in areas of bone loss. They are not sure of the hips though.Walk 5 hrs a week or more. But...check into that drug&if u can't get the correct name,LMK& I will try to find it.
I recently got my dexa scan results, I'm a -1 ostoepenia in the spine, and hip area is normal I'm 49 years old, and in menopause 2 years now. My doctor gave me Actonel, just gave it too me, and basically shoved me out of her office. I tried to tell her, that if it says, MAY CAUSE, stomach pain or heartburn, in me IT WILL. I used to have an ulcer and since then can't even take Advil ibuprofin etc. It just tears my stomach up for days!!!!! After researching this drug, I have decided NOT to take it. I don't think there is enough known about it's long term effects, and I believe I'm not bad enough to need it yet? I mean I'm only at a -1 in spine and my hip was normal? My beliefs are the pharmacutical companies push these drugs on the doctors, and doctors push them on patients. I eat well, walk 2 miles a day, and lift weights and take calcium. I guess I am at risk somewere down the line, I'm 5'1" weigh 120 pounds, but am otherwise healthy. I am going to look into herbal alternatives for sure. My doctor was SHOCKED to learn that I took black cohosh for menopause hot flashes and other herbs for keeping my mood under control during menopause!!! She insisted I have an ultrasound to see what the lining of my uterus was like, since black cohosh was linked to uterine bleeding. To her surprise I was fine!!! I feel so bad for all of you taking this drug, and all the illness, and bad side effects you've had. But I'm convinced more now than ever, to NOT take it. I wish you all well, any comments?
Ostepenia worries me but maybe micalciton salmon may be the answer for u. It's more gentle, sm. side fects. Be careful w/ the weights, they do something to the enzymes in your heart.
Good Luck. I just hate to see osteopenia progress to osteoporosis for you/ I wish I was good as you. I am -2.70 spine& -2.3 osteopenia in the hips& am agonizig over what to take. I'm going to my 1st osto support group tomorrow& hoping to learn more