Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

Why would I ask about Evenity? Just curious to know why you ask.

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@windyshores

@bmrus I second the idea that it helps to know about all the medication choices before seeing the doctor!
Here is a brief outline:

antiresorptives: bone density increases because bone turnover is suppressed
Prolia (denosumab)- injection monthly
Bisphosphonates (Fosamax/alendronate, Reclast/zoledronic acid); Fosamax is oral, Reclast is infusion usually annually

anabolics (Parathyroid analogs)- daily injections- build new bone
Forteo (teriparatide) 20mcg
Tymlos (abaloparatide) 80mcg (adjustable dosing with pen)

both anabolic
Evenity (rosozumab) anabolic (first months) and anti-resorptive - monthly injections (two shots)

For more severe DEXA scores or fractures, we want to start with a Tymlos, Forteo or Evenity because the anti-resorptives make the bone builders less effective if used afterwards

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Very informative, thank you. I now have an appointment, even though it is not until late November, I'm eager to see what the dr says and the plan he suggests.

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you might think one caused the other. But maybe not. Contact the doctor who ordered the Reclast to be sure. good luck.

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After my 3rd infusion of Reclast I experienced sudden neck, shoulder, back bone pain and a level of fatigue that changed my normal active life for 6 months. The pain ended as suddenly as it started. I took a 2 year break from treatment and now need to restart. There is no acknowledgement that this terrible life changing experience had anything to do with Reclast. I understand exactly what I felt. I’m told I should take some Tylenol if I feel some discomfort. As I’m reading here about Reclast Support Groups it makes me angry to see so many patients ignored. There does not seem to be any authorized data collection. I didn’t think there are will be any answers to the side effects until the patent runs out. Doctors can only work with empirical data. And no one is taking with information seriously.

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@newenglandseasons

After my 3rd infusion of Reclast I experienced sudden neck, shoulder, back bone pain and a level of fatigue that changed my normal active life for 6 months. The pain ended as suddenly as it started. I took a 2 year break from treatment and now need to restart. There is no acknowledgement that this terrible life changing experience had anything to do with Reclast. I understand exactly what I felt. I’m told I should take some Tylenol if I feel some discomfort. As I’m reading here about Reclast Support Groups it makes me angry to see so many patients ignored. There does not seem to be any authorized data collection. I didn’t think there are will be any answers to the side effects until the patent runs out. Doctors can only work with empirical data. And no one is taking with information seriously.

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Drugs.com lists these side effects for Reclast:
"Very common (10% or more): Bone pain (55%), myalgia (23%), arthralgia (21%), back pain (15%), and limb pain (14%)
Common (1% to 10%): Myalgia, arthralgia, generalized pain, pain in extremity."

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Thank you. Drug.com is a big Pharma data base. There are no mentions to the longevity of experiencing life-changing bone pain for many months. The only data is on the blogs of human patients suffering. With no acknowledgement from the pharmacology community. Therefore, physicians cannot treat.

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@lkhender

@bmrus you're very smart! I wish I'd researched prior to my infusions. I've had 2 now.. Mild side effects the 1st time but much worse this time. I notified my endocrinologist & she said "Reclast doesn't cause those symptoms." I'm done with the Reclast and done with that doc.

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That is all they can say. So many patients with pain side effects and no acknowledgment from the doctor.

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My Reclast experience for me very severe.
I apparently had a skin reaction of severe burning sensation of neck,
Chest and arms. I was infused the first year and did not notice the reaction so I took 2 more infusions and had this reaction the docs did not connect the 2 things back then
Skin and medicine they probably would today. So I stopped Reclast immediately once I determined the situation.
Because of osteoporosis, my doc started me on Prolia. We’ll see. It’s been 3-4 years.

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@verdine

My Reclast experience for me very severe.
I apparently had a skin reaction of severe burning sensation of neck,
Chest and arms. I was infused the first year and did not notice the reaction so I took 2 more infusions and had this reaction the docs did not connect the 2 things back then
Skin and medicine they probably would today. So I stopped Reclast immediately once I determined the situation.
Because of osteoporosis, my doc started me on Prolia. We’ll see. It’s been 3-4 years.

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Further, I was my own advocate facing this terrible skin burning . But when you have osteoporosis and you want to get stronger bones, you are willing to consider these drugs.
It is necessary to be your own advocate.

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Hello, my endocrinologist has recommended that I start Reclast after finishing up with EVENITY. I have had 7 shots with EVENITY so far.
It would be helpful to hear if there are some people that have had Reclast without side effects assuming there are people without them. This forum is very helpful, however it would be beneficial to hear success stories to provide balanced view.

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