Are you taking Reclast for osteoporosis?
Two years ago I was diagnosed with pretty bad osteoporosis because of the prednisone I was on for my autoimmune disease. I started taking Fosamax (a bisphosphonate) and had no problems. Today, the endocrinologist suggested that I switch to Reclast for 3 yearly infusions. Has anyone else taken this drug? What side effects have you had?
Thanks
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There is no report on PE and Reclast. I reported my case to FDA and asked my doctor to file an official report with drug lot number. I will try to tell Novartis myself because my doctor did not want to report to our hospital pharmacy.
My first infusion ran about 50 minutes, so for the 2nd and third infusion,I asked the nurse to run it the same.
I took reclast a year ago and I am due for bone density test next week. The first 72 hours were filled with chills, sweating flu like symptoms. I lost 5 lbs in 3 days. The remainder of the year were filled with severe headaches, muscle aches, sore throat, lots of hair shedding luckily not enough for others to notice. It was recommended that I have an infusion once a year. I swear I will never take this infusion again. I will let you know where I was before reclast and new results at end of month. I honestly don't know what's next because I am afraid now of all of these drugs.
My endocrinologist said she checked the two drug databases and then the medical literature, and found nothing relating Reclast with pulmonary emboli. She said she also talked with two other endocrinologists and none of them knew of any such report. However the lack of a cause for pulmonary emboli led to a consultation with a hematologist who found a Phase IV clinical trial that studied, among other endpoints, the frequency of deep vein thrombosis and Reclast. So there is definitely a link between this osteoporosis drug and clotting problems. At this point, 5 wks after my Reclast infusion, the pulmonary emboli are my only sequelae from this drug (whole body migrating pains and double vision have ended), but I am being monitored carefully now for possible development of pulmonary hypertension, which would mean permanent damage. I am short of breath when I exercise and my oxygen saturation goes plummeting down (assuming the pulse oximeter is accurate; I returned the $20 unit I bought first to Amazon because it was blatantly wrong even in measuring my pulse, but my $40 unit doesn't work unless my hands are warm, so I also have to monitor the qualitative "perceived effort." I have already told my endocrinologist that I have no intention of ever taking an osteoporosis drug again; the known side effects are already scary and now it is clear that there are very serious unknown (to the doctors) adverse reactions.
So sorry for your experience. Seems we start out healthier before taking some of these bone drugs.
I have osteoporosis, but otherwise healthy. This is a scary situation.
So sorry to hear your awful and frightening story. I am (reluctantly) on Prolia. To tell you the truth I find all of the osteoporosis meds scary.
I hope all of these issues (the Reclast collateral damage) resolve quickly. We are like guinea pigs.
I take Reclast every two to three years. I have no side effects that I know of. I am currently waiting for an MRI of my jaw due to possible TMJ and radiating pain from my jaw. I think it’s likely I have arthritis there but I will ask about the jaw problem that some people get..
I had my third infusion and no problems.
Do you take nothing in between the Reclast doses? That is, do you take Reclast, skip 1 - 2 years and then take the next dose with no other osteoporosis drugs in the interim?
Reclast with breaks is what I am hoping for after I finish Tymlos. @mpeters have you done a bone-growing drug before Reclast?