Discussions that mention pamidronate

Osteoporosis board

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.
Thanks, Suggi, but, unfortunately, it wasn't. Didn't see the Endo, just her PA who couldn't answer many of my questions. They did do a blood draw. Yippee. If they had sent me a script for it they could have had my results at my appointment. The PA did say I was due for another bone scan. Told her I "knew" that and intended to have one done. She really stressed that they would like to do the scan at their office. I explained that all my scans have been done locally and my understanding was that was best, same equipment, etc. for evaluating any changes, etc. We see-sawed back and forth a bit whilst I made up my mind. With some misgivings I agreed to the scan being done during this appointment and the PA agreed she would both give me a copy of the results and sit with me and explain them.

Yeah, well, interestingly, whilst all my previous scans have been done on the LEFT hip and the lumbar area, plus LEFT wrist and LEFT heel, this clinic does them on the RIGHT hip and RIGHT wrist. Pardon my skepticism but I couldn't help thinking how interesting that was ... like WHY they would do the opposite side??? I have my suspicions why. Maybe it is just that I'm not used to working with a specialist. Its always just been my family doctor except for the last 5-6 years or so.

Anyway, the long and short of it is, we've lost ground, supposedly my overall risk factor has increased -4%. But we are still to continue as we have been. Now where in the heck is the sense in that? So, we haven't hit the PTH level and vitamin D level goals to start Forteo. So if we aren't ready to do the Forteo to increase bone growth, why in the devil don't we do the pamidronate infusion to at least slow bone loss? I realize Eli Lilly says that utilizing the bisphosphonates first slows down the efficacy of the Forteo. But, hey, we're losing ground with just the vitamin D therapy so why not DO something?? Besides which, Eli Lilly has a bit of a vested interest. How much do you rely on their info? How big a grain of salt to you take with it?

That is where the Preos studies should be interesting. There is at least one clinical trial somewhere in the SE, the Carolinas, or the like, of Preos in addition to, I think, Actonel, maybe its Fosamax. I'd like to see the results of that study!!!! I know Preos and Forteo aren't totally similar but close enough in my book for this.

Sorry for mumbling and grumbling. I'm just out of sorts and not at all sure I want to continue w/this Endo. Sorely tempted to just go back to my family doctor and say, okay Doc, its just you and I. Let's get with the program!!!!