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Osteoporosis Message Board


Osteoporosis Board Index


Hi everyone!

I'm looking for some advice about osteoporosis treatment, particularly Reclast.

I'm a 31-year-old woman with vascular Ehlers-Danlos syndrome with severe hypermobility crossover. I have osteopenia and osteoporosis, but have never broken a bone (well, except for a toe by stubbing it on a doorjamb). I also take estrogen HRT after losing my entire reproductive system 10 years ago due to a very complicated hysterectomy and appendectomy (internal incisions kept breaking open, wouldn't heal, and created abscesses). I've been taking Fosamax and Citracal for the past 8 years. Unfortunately, my DEXA scans have been worsening over the past few years. I do not know the numbers, but I do know that my vitamin levels, especially vitamin D, were found to be "very low" and I'm taking supplements to correct this. My doctor has recommended and set up an appointment for a Reclast infusion.

I am terrified to have the infusion. I don't want to do it.

I have extreme fear over taking new medicines after having a life-threatening and very scary reaction to something given to me IV before foot reconstruction surgery 11 years ago.

I've also heard not-so-good things about Reclast: pain, feeling sick, little or no improvement, and people saying they wish they never had it done. I also recently found out that my upper right jawbone is so thin that the roots of my teeth protrude into my sinus cavity, and it seems jawbone loss is a bigger risk with Reclast than it is with other medicines in the same class.

I don't know how to tell my doctor all of this without sounding like a weirdo, even though she's always been very nice. I don't want her to dismiss me for not wanting to take her advice. I'm just getting a really bad gut feeling about going through with taking the medicine.

If anyone has any advice or experience (positive or negative), I'd love to hear it.
My experience with Reclast has been nothing but problems. In 2013 I received the first dose of Reclast. I woke up the next morning and 3 of my fingernails were lifted off of the nailbed. In 2014, I developed osteonecrosis of my left lower jaw. I ended up losing 3 teeth. Because I have recurring bone being exposed in my jaw I am not a candidate for implants. This is also very painful. This year I thought I was in the clear because my doctor said she would not order Reclast due to the osteonecrosis of my jaw. On April 4th of this year I was standing while ironing a shirt. Suddenly there was a pop noise coming from the top of my leg and I could feel my femur moving over. I am thinking this is insane. People don't fracture their leg just standing in one place. Then I found out they do and it was due to my using Reclast the previous 2 years. My femur fracture completely in 2 pieces in the trochanter neck of my femur. This is the strongest point of a person's femur. The trauma surgeon told me it is almost impossible to break your leg where my leg broke. I then found out it is a rare side effect of Reclast but it usually will occur in the 3rd year after starting Reclast. This doctor had asked me how long I was taking bisphosphonates and I am like how did he know I took that medicine. I had never told anyone in the ER. Then he told me about it being a side effect of Reclast. I now have a rod that starts in my hip and goes to my knee with 4 screws to keep it in place. I am now on Forteo for osteoporosis. I really recommend you ask your doctor if you can use this drug instead. It works completely different than Reclast. I hope this helps you make a decision.





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