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NancyH 12-22-2002 09:35 PM

I've made my decision
After 6 months of taking actonel I started to gain weight(only 4lbs but) which is nuts for me. I've weighed 110lbs for over 2 yrs and then suddenly with no diet changes I'm gaining and losing hair to boot! Can't take it. So I will not take the stuff anymore, will continue with my high clacium diet, calcium supplements, excersise etc. Dr will be furious but who cares? I don't want to find out down the line that this crap is shown to cause cancer in the bone or cause stroke or whatever. Just like the HRT, now you have to decide what is worse. I really do think that excersise(I do 40 minutes every other day)high calcium diet and supplements can keep me from going over the brink. I may be living a pipe dream but I'm going to give it a try for one year. I am moderate osteoporosis in the hip and spine.

lno 12-23-2002 06:54 AM

Good for you!!. I,too, suffer the same symptoms. Please read my post under Maranui "Difference Fosamax & Actonel". I've gained 15 lbs since I started on all this stuff. My hair loss is really bad since I went on the 35 mgs. Actonel 2 mo ago. Talked w/Proctor & Gamble, they can only offer study data, which hair loss & weight gain was reported at only 0.2%. Maybe we ALL should call them & report our findings. I'm happy to know it's not only myself who has these symptoms. I, like you, however, wonder about long term effects of taking this drug!!! I hope I made the right decision 3 wks. ago when I stopped Actonel. Rhumatologist was informed of these side effects and replied, not a factor with the drug!!!. Please, anyone else noticing hair loss/weight gain from either Fosamax or Actonel (they both are derived from the same basic chemical b...something) let either Proctor Gamble or Merck know. HAPPY HOLIDAYS

Jonathan92280 12-23-2002 02:42 PM

I think guts instincts, although unproven, are sometimes the way to go!!! My mom is in a similar boat - she has osteopenia and was berated for not wanting to try Fosamax for prevention (let's forget for just a moment that 3 seperate clinical trials have not shown fracture benefit in women with osteopenia, and very little benefit for women who have not had a fracture). In fact, F.I.T. showed a 1% INCREASE in fractures for women on Fosamax with osteopenia compared to the palcebo group. All in all, it seems safe to say that bisphosphonate drugs are bad choices for prevention, although their benefits are clear if you've had a fracture.

Diet and exercise go a LONG WAY!!! In fact, you can improve your bone density up to 5% in one year by getting enough calcium (1,500 mg a day for postmenopausal women) and weight-bearing exercise, which honestly means STAYING ON YOUR FEET. However, definitely throw in some light weight-training (be careful about not overdoing it though b/c too much weight can cause compression of the spine). And I wouldn't worry either, having low bone density in one site such as the hip does not mean you will crumble in one year. Just stay strong. And if and when you feel a drug may be appropriate, then consider it. Yet if the drug makes you sick and causes some intolerable side effects, then I find no good reason to stay on it. Quality of life matters! And, unlike what most doctors espouse, diet and exercise are not complimentary therapies to a specific drug treatment!! Diet and exercise are and should be the FIRST LINE OF PREVENTION!! Complimentary/alternative medicine means there is not sufficient medical research to justify its use in traditional medicine. There is nothing "alternative" about diet and exercise. They are part of the optimal way of life! THEY COME FIRST!! If their benefit proves to be limited, then you go another route!

I'm not trying to be condescending at all, I'm just being an avid proponent of what you think is right! :)Keep it up!

Bitsy 12-27-2002 08:03 PM

Thanks for the info on the hair loss. Is it alot? I've been losing enough already. What are all your bone density measurements? I'm bad in the spine& osteopenia in the hips.
I go to the Dr on Jan 6th& need to make an educated decision. My Rheum wants to infuse a breast cancer drug not approved for osteoporois on me, once a yr& if the pills have such bad side effects taken once a day or a week,what the heck will that do through IV once a year& how potent is it???? Scarey stuff called Zometa & as i said for breast cancer& bone cancer patients that chemo has ruined their bones. Is it cement??? LOL Sorry, if not for humor I think I'd go crazy.

arkie6 12-28-2002 06:35 AM

Don't forget that bones are made up of much more than just calcium.

Over 50% of a bones structure is protein. So make sure you are getting adequate amounts of high quality easily assimilated protein (meat, poultry, fish, eggs, dairy) in your diet.

Then there is magnesium, which is very important in bone health, yet many people don't get enough in their diet and fewer supplement. Good sources of magnesium are dark green leafy vegetables (magnesium forms the core of the green chlorophyll molecule). And if you are going to supplement, chooose a form that is highly absorbable such as magnesium citrate (a chelated form of magnesium) rather than magnesium oxide.

And then there is vitamin D which is vitally important in bone development. No vitamin D and your bones crumble (rickets for example). You can get synthetic vitamin D from fortified milk; however, the best source is that which your body makes from exposure to sunlight. Everyone should shoot for a minimum of 15-30 minutes of direct sun exposure on bare skin every day so that your body can convert cholesterol in the skin into vitamin D. If you can't get this due to climate or other conditions, especially in the winter time, consider another excellent source of natural vitamin D, that being cod liver oil.

And if you are consuming a low-fat diet high in whole grains and/or soy, you may be setting yourself up for mineral deficiencies and poor bone health. The phytic acid / phytates in grains and soy bind with minerals and block their absorption which can lead to deficiencies. So even if you are consuming 1500 mg of calcium per day, you may only be absorbing less than a third of that if you are on a high grain/soy diet. And many minerals require fat for absorption, so if you aren't getting adequate levels of fat in your diet, many of these essential minerals (vit. A, E, and K) just pass right through your digestive system and provide no benefit.


lno 12-28-2002 07:34 AM

After reading all the posts re:side effects of bisphophonates, I've decided to give my body/bones a holiday, as my Rhumo calls it. I'm going to see in a few months if the side effects have decreased and in general, how my body is feeling TO ME!!. After being on both Fosamax & Actonel over 3 yrs., my last DEXA was NO BETTER from the drugs. Very same reading in 2 areas. -2.8. So...what's the use of taking these expensive drugs and wondering if they are going to be the demise of us? I will await further studies and hopefully a more tolerable drug therapy for bone loss, will be available. Sounds like most of us are undecided on what to do the betterment of ourselves. It would seem if we all are reporting these side effects from drug therapy, we should consider the alternative, which would be proper diet and exercise. Both of which are difficult for me now with other health problems. I will do my best, sometimes the more drugs the more problems, who is to know the drug interaction for each person? Like I've stated before, we are all unique, no one of us tolerates meds the same. I, too, have made my decision, no more Actonel 35mgs. for a few months to evaluate & then talk w/Dr to see what the next step may be. On that note I will just say, Happy New Year all, hope it's a good one for us all. GOD BLESS AMERICA

bjg 12-29-2002 06:16 AM

believe me.i dont like taking drugs any more than the rest of you ..but many of us are between a rock and a hard place...put up with the side effects or suffer devastating fractures later for stopping your
bisphophonate just because you didnt regrow said your reading after 3 yrs was the it possible that it kept you from losing more bone....which while not as good as increasing your bone density..its better than continuing to lose as i have been doing.....good luck

NancyH 12-30-2002 09:54 PM

Bitsy, I would research the IV drug before I let any Dr put that into me. I've heard it is very harsh. Just my humble opinion. I know some people have to take some kind of drug as their numbers are very bad but I'd research alot first. I'm moderate osteoporosis in the spine and hips and I'm just going to give this no drug theory a 1 yr try, if after that the bone scan looks worse I'll have to consider something else even if it includes a bio drug.

lno 12-31-2002 06:40 AM

Nancy, My thinking is quite like yours. As stated previously, I'm taking a holiday from drug therapy. IF I notice hair loss & weight gain stopping, I will surely know it's from drugs. I will also consult w/my Rhumo in a couple of months after I evaluate circumstances. I'm not trying to be an alarmist, however, I don't want to cause any further problems to my body. Thanks for all the input both pro and con on this subject. HAPPY NEW YEAR GOD BLESS AMERICA :> )

NancyH 01-01-2003 05:09 PM

Me to. I guess you could call my rebellion a drug holiday to. I don't want to worsen my bone density but gezz I have other medical conditions that I have to deal with also and adding another drug complication isn't worth it to me. Hope all have a happy and drug free as possible 2003.

Bitsy 01-01-2003 06:01 PM

Thanks for the info, but what have you heard about IV Zometa being harsh? I FINALLY found a site, that said it causes heart pain, like someone's sitting on your chest. Also causes syncope which is fainting. As I have been told I am high risk for a heart attack or stroke (at 47) because of a high homocysteine level, how would I know if the IV drug is causing the heart pain or a true heart attack? I know many people that had heart attacks that their symptoms were not the norm we hear about.The Dr said take a baby aspirin everyday, but I'm bruising so bad& have nose bleeds everyday, so I'm cutting down& will take one every other day.Zometa site also said not to take this drug if taking baby aspirin. Now what?? I find it amazing w/ all the Dr's I've had the last ten yrs from the car accident& them All knowing my menses stopped, all they asked was if I was on HRT. The answer was no. Why did they not tell me to take calcium or the effects it could have on my heart??? I honestly thought my diet was protecting me.
Take Care& Happy New Year to all

NancyH 01-02-2003 07:50 PM

because like me you were still not in the age of suspicion. I went through early menopause relatively at ease(surprised even me)no HRT as I'm high risk for breast cancer, already had one benign tumor removed. No one told me about calcium but I ate lots of yogurt, non fat milk, lots of greens but obviously not enough. Even tho I have other medical conditions in the spine they saw demineralization taking place back in my early 40's and didn't say anything then when I could have really gone to town on calcium rich foods and protein thrown in. I heard that the IV treatment caused chest pain, nausia, dizziness and fainting and personally no more effective than taking the fosamax or actenol and I'm not going there either. I'm 54 now and have a spine of a 70 yr old, I work out everyday on the treadmil at least 40 minutes and do cross training which does help the spine arthritis, hopefully it will do some good for the bones along with the high intake of calcium. It's a persanl decision for you but IMHO it's not for me I'm too chicken. Have a happy New Year and God bless us all.

Bitsy 01-03-2003 07:04 PM

We are alot alike w/ the breast cancer risk/ My Gram had it& last yr mom got it in both breasts. The oncologist says I will probably get it too,but I get mammos& ultrasounds every 8 months.
Back tracking to osteoporosis... I wrote my Rheumatologist wants to use that Zometa once a yr thru IV one me. Well, last night my son was watching TV& saw a ' New Breakthrough ' in Osteo. Yep...It was Zometa, the one FDA approvd for breast, bone& prostate cancers to build thier bones after the chemo ruined them. They had 3 patients interviewed that had no side effects at all & it was announced it wold be FDA approved for osteo at the end of the yr. I realize we don't know the long term affects of this, but theses cancer patients have been taking it a few years. As far as the syncope goes (fainting), they found the dosages were too high& too long& that has been ajustes. So, I may try this. It's 35 mg infused for 15 min& only once a year. Seems better tha taking a pill every day& worry about GI bleeding, reflux, yada,yada. I have to take something& make my decision soon.My spine is really bad& this drug really provents fractures & helps regrow if my son heard correctly. I will ask my Dr Monday to make my final decison.....
Just wanted to let you all know it's going to be FDA approve& the adjustments they have made.
Wish me luck& as always, my prayers go out to all of you.

NancyH 01-03-2003 07:53 PM

Thanks for the update and if ya decide to do so let us know how it goes for ya. I missed that TV segment, but like everything else the more information the more likely the right decision. I've only known 2 people who did this and they said it was awful, we have to consider that not all things work the same on everyone, you may do just fine with it ya know.

Bitsy 01-04-2003 11:12 PM

Gz Nancey
ou had friends that had this& both said it was horrible? did they say what the symptoms were? I feel so wishy washy now. The news had a couple woman that did great & since the other drugs are horrible& u have to take it everyday or once a week, I felt once a year seemed better. I will tie my Doc down w/ my 5,000 Questions til I feel comfortable. LOL
He's a good talker so I have to trust him& I really need something, even if it's crazy glue/ LOL
Will keep you posted on what he says. He's considered one of the best Rheumo's in the US, so I'm sure he knows alot. I mentioned the new Forteo & he balked at that one& it's a newly approved FDA osteo drug. I heard it causes bone cancer in rats. Now, according to most, I'm no rat (lol), so maybe I'll ask again why he doesn't like that one.

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