Quote from suggi:

Aleta

I went to another endo and guess what. She wants to be more aggressive. Gave me liquid Fosamax which I just know will kill my stomach....the gatritis is really bad even with all the anti acid meds I am on. Seeing my gastro doc Friday. She said if I can't take it she wants to put me on Pamidronate IV every 3 months. I DON'T THINK SO. With my osteoarthritis of the jaw joint and bad healing of last tooth I don't want the osteonecrosis. I still need that other tooth out - upper crowned, root canaled with roots in sinuses and I'm scared of that even. She did say the Evista is just not doing anything though. I still want to get the HRT somewhere. I did post the new drugs I found that have not been approved yet and a couple sound a little better. I hope they are approved soon. Good luck to you and your husband. How is the Fosamax affecting him? Does he have any stomach problems. My husband said I have to at least try a dose but it only comes in the weekly dose in the liquid and I wouldn't want a problem for a week especially since I am also allergic to most drugs. Who knows......and if you don't look out for yourself no one else is going to. I am sure you found that out yourself.

Take care.

Suggi

Hi Suggi, I'm so sorry you have such troublesome complications. From what I've read (and this info was dated Dec. 2004 so it's pretty fresh) osteonecrosis of the jaw occurs in an estimated 1 person per 10,000 taking IV biphosphonates. I don't know if this makes you feel any better about it, but of those who take it, most are being treated for cancer which means they have also had chemotherapy, radiation therapy and/or corticosteroid therapy. They aren't sure what (if any) impact those therapies may have when combined with zolendronate (Zometa) or pamidronate (Aredia). If you're going to have that tooth pulled, you need to do it before getting started on IV biphosphonates.

My husband hasn't had any problems in his 5 years taking Fosamax, although I suspect his dry eyes may be traced back to it. He had good results the first year he took it, but lately his results have been erratic. I'd like to see him go off it completely. He's seeing a new endocrinologist on March 3 to check him out. If he likes him I might go there also. If he recommends Zometa for me I might consider it again, but I need more proof that I have fragile bones. There are plenty of people with low BMD who never get fractures, and people with normal BMD who DO fracture. I'm just not convinced that bone density has anything to do with bone strength.

I don't know anything about the new drugs you posted about below. I feel comfortable taking SERMs because they address both of my health issues in one pill. I just don't know how well it's working yet. I've only been taking Evista for 4 months. Since I'm 49 and peri-menopausal I don't even know if it will work at all, but it's supposedly better than continuing tamoxifen. I'm due for my 2nd DEXA in May. I can't wait to see my new scores.

Wow, Steve! I didn't realize there was THAT much difference between Zometa and Aredia!!

I had a pamidronate (Aredia) infusion at Mayo Clinic in October 2004 for my osteoporosis since I've refused to even consider Fosamax or Actonel due to my Crohn's disease and Miacalcin is virtually useless. The Endocrinologist at Mayo suggested a TWO HOUR infusion every 3-4 months. I did experience a very mild tingling in the lips and at my wrists. Because of that the drip was slowed to a four hour infusion rate.

The next day I did experience the achey joints, chilled to the bones, queasy symptoms for about 10 hours. Since I have a lot of problems with nausea from the Crohn's at times I just popped a Phenergan tablet and slept the day way.

That was it! No other problems.

Aleta, we had an Orthopedic surgeon speak on Osteoporosis and I brought up my pamidronate infusion (Aredia) and he was quite insistent that I could only have gotten it thru a clinical trial. It wasn't worth arguing with him.

Most hospitals have an infusion center. The Remicade infusions for Rheumatoid Arthritis and Crohn's Disease can be done at these infusions centers. As can the pamidronate infusions for osteoporosis. And virtually any doctor can script them to be done at these infusion centers. These are the same centers that do cancer treatment infusions.

Suggie, I also have Crohn's disease. I'm on Pentasa and Imuran for that. I had my first pamidronate (Aredia) infusion in Oct 2004 after I had been on Imuran since April 2003.

Actonel, Fosamax and pamidronate are all bisphosphonates, just different formulations. The pamidronate is less likely to cause problems with the Crohn's because it is given via infusion rather than taken orally. The pamidronate didn't disturb my Crohn's at all. I'm one of the sub set of crohnies more prone to constipation than diarrhea and thus I have a problem taking a calcium supplement which does me no favors in trying to treat the osteoporosis, obviously.

Quote from SteveCal:

I had a zometa infusion about a year ago. It was done at the VA hospital in San Francisco. Unfortunately I was one of the people with bad side effects. Within a day of the infusion I had vomiting, severe pains in my bones, and bad inflammation of the eyes. It lasted about two weeks. My doctor said that she couldn't recommend me getting the infusion again. She reccomends it only one a year. It is a serious drug used for bone cancer treatment and the infusion can only last about ten minutes since it can damage your kidneys.
Maybe because I am male my side effects were different. On my last Cat Scan my bone density increased about ten percent, so it probably did help. My doctor says it stays in you bones for up to five years so I might continue to have improvement.

Good luck -- Steve

Here is his post. It was on the first page of this particular thread. I don't know diddley-squat about Zometra except what he posted. I'm wondering if they just really hit him zap with a huge dosage but that it could have been infused more slowly, in lower dosage and spread out over an infusion every 3-6 months like the pamidronate (Aredia). It sound more like VA was trying to kill him and get him off the books than help him! But maybe that is the way Zometa is supposed to be infused. I'm certainly not interested in learning more about it given I have had success w/the pamidronate as far as tolerance, side effects, etc. The nice thing about an infusion, they are right there with you, if you experience ANY reaction regardless how mild they can STOP the infusion immediately and administer any necessary measures to counteract the reaction or if it is a really mild reaction like mine, just that mild tingling in the lips and at the wrists (so mild I wasn't even sure if it was worth mentioning) they can just slow the infusion rate or maybe add some benadryl or something to the infusion.