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    Old 01-05-2003, 07:08 AM   #16
    lno
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    Bitsy: Since you have an upcoming appt. w/your Rhumo, possibly you could ask some of the ????'s we all are asking each other. Like, is Fosamax or Actonel the cause of hair loss and weight gain? Along with your much needed answers to the once a year drug. I, myself, would consider much more testing on this one. After all, if you get one shot which is to last for one year, who is to know the side effects during that year. Good one to ask huh? If he/she assures you the studies have all been done and it's safe, you must make your decision whether to try it or not and move forward, not looking for those side effects & know that it will help build bone. The one that caused cancer in rats is awful. My thinking is: if Actonel 35mgs. is causing my hair loss and weight gain, WHAT else if it causing that I, now, cannot see???? Good luck and please report back to us all. :O:

     
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    Old 01-08-2003, 07:17 AM   #17
    lno
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    Thanks Bitsy for responding w/your Dr. appt update. Thanks so much for asking re: weight gain/hair loss. Now, what is the cause of this hair loss? Others have reported it while taking Fosamax & Actonel?????My Rhumo also said it was not the drug. Possibly they don't really know this IS a side effect, after all we who take it know what is happening to our bodies. Anyway, thanks for the input. Now, on your behalf, good luck w/your I.V. Sounds like "they" have it figured out on the correct amount to give!!! Let us all know how you do on it. Did you ask your MD re: side effects, other than renal? I don't want to sound negative re: side effects, however, it seems a lot of times side effects are worse than the disease itself. I, myself, must decide what to do as far as going back on ANY meds or just nothing???????Quandry I'm in!!! Good luck to you and remember, go with a positive attitude that the I.V. WILL work & visualize as it's going into your vein of it building your bones and being strong. Let us know.

     
    Old 01-09-2003, 10:37 AM   #18
    twi9gy
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    Regarding the bone building medications...In June '02 I was told I needed to take Evista. I had hx of hiatal hernia & often took over counter medication for indigestion.The directions for Evista are similar to Fosomax...take in the a.m. & don't lay down, ect. I followed instructions & about 4 days noticed terrible post nasal drainage, with severe sore throat, etc. In 7 days I had my first of several esophageal spasms over a couple of months. I stopped the Evista at the first spasm. This followed by severe indigestion & acid reflux over several months (which led to more complications). Anyone else have this experience?

     
    Old 01-10-2003, 05:13 AM   #19
    bjg
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    i have been on evista since may..i did not see any instructions that said i needed to take it and wait 30 min before lying down...where did you find that? other than hairloss i seem to be having no side effects..and i have pretty much decided the hair loss isnt related to the evista..because i stopped it for a month and the hair loss continued.my thyroid tests are normal..i know that menopause can cause hairloss...the drop in estrogen causes the hair follicles to shrink and the hair to fall out....

     
    Old 01-12-2003, 05:45 PM   #20
    NancyH
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    Well I lost one of the lbs I'd gained with actenol and I stopped it on 12/20, have not noticed anymore hairloss since then either. My rheumy did tell me that I should not stop as the osteo is pretty bad in the hips and that is not a good place for it. He admitted that thinning hair and slight weight gain is possible and common and it does even out after a long period of time taking it. Bitsey that was only 2 friends so it isn't much of a comparison as I don' know anyone else who had it done. It would be interesting to know how it works for you as my Dr has mentioned the IV treatment to, boy it costs mega bucks equal to my hubby and his bypass surgery gezzz ya think? Let us know.

     
    Old 01-12-2003, 07:27 PM   #21
    Bitsy
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    Iam waiting for aapproved by my ins. co & had to postpone treatment til I get the ok, But will let you all know
    Health!!

     
    Old 01-13-2003, 05:45 AM   #22
    lno
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    Well, Nancy, I, too, have been off Actonel since 12/09/02, and this past week is the first time I've noticed not near as much hair loss when combing or washing my hair. Also, I feel less bloated, have not weighed in as I'm going nuts watching the scale go up up up up!!! Ya, my Rhumo also told me NOT to stop taking it, or I would have to try something else. ARE YOU KIDDING???? I've TRIED enough. If and when a SAFE drug is there for consumption, I'll try it. I'd rather go w/a broken hip than the ugly things that can happen w/long term drug usage. Show me & I'll believe. Like I've stated before on these boards, everyone is different. Maybe some are having no trouble at all w/Fosamax or Actonel. I did, I refuse to let someone who does not have to take it tell me to take the darn thing. smiley face. Have a good week. GOD BLESS AMERICA

     
    Old 01-13-2003, 08:30 PM   #23
    Bitsy
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    H
    I tend to agree w/you about safe drugs.
    After researces all themeds, FDA approved& not, thy are all too scarey. I went to see my internest today& he said'why take something that ca caue more problems then what u may get>> fractures. He wants me to do the calcium thing, exercise& redo the DXA in 6 months. These drugs have so many side effects, it's freaky/ I got the pamphlet from Novartis today on how many in the studies got each side effect& it was HIGH!! All of them!! Durng studies, they lost over 40 patients from renal failure. Weigh the risks against the benefits? I know what I want to do. (Wait 6 mos.) Hope you all are well& do god.
    Good Luck

     
    Old 01-15-2003, 09:17 PM   #24
    NancyH
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    Hey, when my rheumy said to not stop the actenol because my hips are pretty thin, I didn't say I wouldn't stop it just in my head I said I'm not going to take it anymore. Let him think I'm being a cooperative patient for now. I figure with taking mega high calcium foods and supplements is better than taking a drug whose long term effects are really not that well known right?

     
    Old 01-16-2003, 06:34 AM   #25
    lno
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    I'm with you on that one Nancy. It makes no difference to Dr's IF you take a drug or not. They can offer it to you, however, if you say no, there is nothing they can say or do. It's, after all, your body and you have the choice NOT to take it.I had one MD say that very thing to me re: HRT) I have no problem taking drugs that are necessary to sustain life, (i.e.) blood pressure meds, etc. BUT a drug with all the side effects and those not known yet.....I say....no, I'll wait & see. It could be, I'll have a fracture, whose to say the fracture is worse than the side effects of Actonel/Fosamax???? I'm still not taking the Actonel, been off 2 months & feel better in general. Probably, knowing I'm not causing harm to my body. My DEXA showed no improvement anyway the last time, so who knows how much bone is being built?? Good health to all. GOD BLESS AMERICA

     
    Old 01-26-2003, 10:30 AM   #26
    rosarobin
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    Bitsy, Nancy & Jacki......... I just want to say "ME TOO!"

     
    Old 01-27-2003, 10:09 PM   #27
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    Hey girls, I'm still not taking the actenol and I lost 2nd of the 4 lbs I'v gained. As for the hair loss it seems to be nothing right now. The Dr thinks I'm taking them again and will keep it that way for now just to see if my way works better than the drug company. Lots of calcium, magnesium, vit D, Protein and good sound exercise while crossing my fingers! Hope all of ya are well.

     
    Old 01-28-2003, 06:10 AM   #28
    lno
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    Glad to hear from you Nancy, as I, too, am NOT presently taking the Actonel. I hope I'm not putting myself at risk of a fracture. Yet, in another way, I feel better physically & mentally as the symptoms of hair loss is almost nothing & my weight could be better, but, I'm not able to exercise as before due to a lung obstuction problem ( asthma like since a bout w/bronchitis). So I'm limited to walking & I should be doing a lot more. Anyway, my Rhumo still thinks I'm taking the Actonel, at least I've not informed him I'm not, & will continue just as I am. Taking around 1500-1800 mgs of calcium, D,E,C,& a multi daily. If that doesn't do the trick, I'll try something else. No one in my family took these drugs as they were not available & no one broke a hip, wrist or anything else. Not to say I couldn't, as for now, I'm off Actonel & feeling better. Keep me posted on how you're doing N. Good luck to Rose & Bitsy & all who question the effects of taking these drugs. What about you Bitsy, did you decide not to get the injection? Have a good week. GOD BLESS AMERICA

     
    Old 02-09-2003, 07:41 AM   #29
    lno
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    Well, I'm eating crow!!!! After being off Actonel for a couple of months, I had the need to visit my MD for an unrelated problem. Informed her I was off Actonel due to the extreme hair loss and weight gain. She insisted hair loss was NOT a side effect from Actonel or Fosomax. AND, that I needed to take it as long as it was not causing any gastro problems due to my -2.8 T score. So, that kinda frightened me back into taking one this week. So I've been off 2 months, noted less hair loss however, no weight loss. That must be me or from the IBS I also suffer from. It's possible the hair loss was due to the dry winter & hair color/perm. I'm only guessing, but, I am going to give the Actonel 4 weeks & see if I note worsening of the side effects I thought it was producing. I'm convinced bisphosphonates do, in fact, cause the hair loss in some people. However, the bone building it provides is also noted by this crow eater so, needless to say, I'm back on it for awhile anyway. Any response from Nancy or anyone who takes Actonel is appreciated. FOR OUR SAKE, GOD BLESS AMERICA.

     
    Old 02-09-2003, 05:24 PM   #30
    Bitsy
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    HI
    I just wanted let you all know that I am waiting for approval fom my insurance company...STILL!!
    I am still very aprehensive about a drug that has to be infused & how strong it may be to my system. If the others cause so many side effects, what will this Infused non approved drug do?
    Needless to say, I am scared of the fragile bones, but even more afraid of the effects of these meds available to us. At one point I had decided to take Forteo injections (everyday) just to build my bones faster til I heard it caused a rare form of bone cancer in rats. I'm no rat, but in the studies they only recieved it thru a small injection in the skin, micro amounts. We have to inject it into the thigh or stomach. (ouch)... So, that made me decide not to.
    That drug does work fast I hear. People who take it double their bone mas in 8-12 months. But because it makes the cells grow so fast, it makes me wonder if ,like cancer, the cells will get out of hand& continue growing like cancer does. I'm already at high risk for breast cancer , but worrying about bon cancer too? I think not. I'd like to tr that nasal spray, but hear it doesn't help in the hips. But..Iam osteopenic in the hips & osteoporic in the spine,etc.
    I'm woneing if th calcium,D,magnesium& excercise will do it for me in my hips.
    My Dad broke his hip (unrelated to osteo) months ago& it's so sad to see how he walks& the pain he's still in from those rods&pins & he's got good bones. I wonder when they insert the pins into soft bones what that will do. Geez, I've never been so wishy washy& indecisive in my entire life. This is just so stressful. Even the calcium is awful for me. What a great spport sytem we have here. Keep posting. You all tell it like it really is & although our Dr's may give us what's available, it's not them that have to take it.
    Luck to all,Peace & God Bless

     
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