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Old 02-25-2005, 06:08 PM   #1
pweg
Newbie
(female)
 
Join Date: Feb 2005
Posts: 2
Question Areida or Zometa???

Hello,

I'm wondering if anyone can share with me their experiences in the infusions of Zometa or Areida. Can you explain your dosage level, duration of infusion, how many infusions you have had, side effects, and if your bone density has improved.

I understand these drugs are not FDA approved for the treatment of osteoporosis yet, so any experiences would be helpful.
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Old 02-25-2005, 08:52 PM   #2
CrohnieToo
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(female)
 
Join Date: May 2003
Location: Michigan, USA
Posts: 523
Re: Areida or Zometa???

I've had one infusion of Aredia (pamidronate). It was 60 mg started at a 2 hour drip rate. I experienced some very mild tingling in my lips and wrists, so mild I wasn't sure whether to even bother mentioning them to the nurse or not. My drip was slowed to a 4 hour rate. We were out of town at the time and finished the infusion about 9:30 PM.

The next morning we left for home about 8:30 AM. We stopped at 10:30 AM for some breakfast and on leaving the restaurant I developed a very deep chill, some transient joint aches and a queasy stomach. I could not get warm no how. This lasted about 10 hours. My husband was concerned so he took me straight to ER when we got home. ER could find no cause and assumed that I had a "viral syndrome" since I had been away from home amongst hundreds of strangers from all over.

I since learned that there was the "possibility" that what I experienced was a reaction to the pamidronate infusion. Since I can't (won't) "do" Actonel or Fosamax due to Crohn's disease I don't have many optons for treating my osteoporosis. I would 'do' pamidronate again w/o hesitation despite that possible "reaction" or "side effects". I'd just pop a phenergan and sleep the day away.

My Endo seems to be showing a preference for my starting Forteo instead of the pamidronate WHEN she is satisfied w/my PTH and vitamin D 25 hydroxy levels. She's been treating me for a year now with 100,000 IU of vitamin D 1 x weekly for osteomalacia. "I" am getting impatient to start either the Forteo or restart the pamidronate. I have an appointment on the first of March and we shall hash it out then.
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Old 02-26-2005, 02:32 PM   #3
suggi
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Join Date: Sep 2003
Posts: 332
Re: Areida or Zometa???

Hey Crohnietoo
I was given samples of liquid Fosamax that the endo doc swore would not bother me.......I amafraid to take it. I keep looking at the bottle. She said I could start on 1/2 bottle to try it but I am still scared. I not only have Crohn's but also gastritis, esophagitis and acid reflux. The Evista isn't helping, I went down 3% on it via bone density test. I am still on it at this point but have recently (over the last couple of weeks) gotten a painful foot and pains in my right leg. The NP (never can see the PCP) said it wasn't the Evista (no blood clot) by feeling the leg and foot? - thought you would need an ultrasound and to go back on the Evista as I had stopped it. If I can't take this I am out of drugs for osteo. Any suggestions?????? Thanks.

Suggi
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Old 02-26-2005, 03:55 PM   #4
lindajo
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Join Date: Feb 2005
Posts: 5
Re: osteoporosis

The best thing to do for osteoporosis is eat dark green veggies, like spinach and broccoli, yogurt, acidophilus milk, which tastes like "normal" milk, a moderate amount of meat, and good exercise. Progesterone cream, rubbed into the skin twice a day, has been proven to increase bone density and carries no risks. I like the Emerita brand. Natural progesterone doesn't have the side effects that synthetic progestin does, which is real progesterone that the drug companies changed molecularly so they could patent it and make big money on it, which they can't do with a natural product. Start slow on the cream to minimize the breast tenderness and, if you still have a uterus, some cramping, like one would have before a period. These minor problems only happen when you first begin using it. I've been using it for years and have great results. Dr. John Lee says progesterone cream is the only known product that will help your body build real, living bone.

Fosamax and it's sister drugs do not build living bone. It is a poison acid in the same class as soap scum remover. It kills the osteoclasts that normally scrub away old, dead bone cells to make way for the osteoblasts to follow and fill in with new, living bone cells. So, Fosamax allows the dead bone to build up instead of being removed. That looks great on a scan, but after several years, this bone is very weak because it is layer upon layer of dead stuff.

My aunt began taking Fosamax 2 years ago. The first problems she noticed were that she was gagging on her food, food no longer tasted good. She had stomach and abdominal pain. Her eyes began deteriorating and her joints began hurting so she could barely write anymore and getting up in the morning became difficult. Then she began falling down with these seizure-like episodes that left her temporarily disoriented. That's when I began researching the drug.

Since then, a dear friend of mine in Seattle began falling down with these seizures and her joints hurt so badly she was walking with a cane and she had all the other problems my aunt had, too. I asked her if she were taking Fosamax. She said "Yes!" She quit and I'm happy to say, the seizures quit and her joints feel better. She no longer needs the cane. She is so happy I told her to get off it. Since then, my sisters and I have discovered 8 people that all had these same symptoms and were all on Fosamax. The ones who quit stopped having the problems.

Unfortunately, my aunt quit for a short time, but her daughter said she had to take it because she had to follow her doctor's orders. The doctor says that if the seizures were caused by Fosamax the FDA would have warned people that it was a possible side effect. But like her, most doctors have not connected the symptoms with the drug. They refuse to believe that Merck, who also marketed Vioxx without enough testing, could put Fosamax on the market without enough testing. But they are making billions on these very expensive products, and wouldn't admit anything unless forced to. They wouldn't have withdrawn Vioxx if they hadn't seen the handwriting on the wall. Two scientists in Berne, Switzerland did a test on Vioxx and discovered the link between it and death by stroke and heart attack. It is estimated that between 27 and 29 thousand people died from it just here in the US, and perhaps 100,000 wordwide.

Please don't use Fosamax or anything related to it! Lindajo
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Old 02-26-2005, 04:56 PM   #5
suggi
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Join Date: Sep 2003
Posts: 332
Re: Areida or Zometa???

Lindajo
I saw your post re Fosamax. Wow... Can you use progesterone cream if you had breast cancer (DCIS) and had a mastectomy? I am not allowed to take HRT any more since then and that is when my bone density went way down. I wasn't on anything for more than a year after the operation and went down 33%. Then another 3% on the Evista this past year. The HRT had kept my bones stable even though they had me on high doses of Prednisone for my Crohn's at the time. I have not had any steroids since 2002. I'd love to try the cream but don't know who to ask. I bet any amount of money that the surgeon would say no as she did when I asked if I could go back on HRT last month at my last surgeon check up. She won't even let me take soy. However, I found out doctors do not know as much as they think they do and I have had a lot of doubts about a lot of things I have been told by various doctors---gastro, surgeon, endo, etc. Please let me know your thoughts about this. Perhaps it is only the estrogen that is the problem and not the progesterone, esp. the natural kind.
Thanks much for your help.

Suggi
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