Reclast side effects

@njx58 I would be concerned about -3.3 especially doing triathalons but perhaps his bone quality is good. McCormick did Forteo then Fosamax and then "holistic approaches" (title of his first book. He is also not female or post- menopausal and perhaps you know more about "male menopause."

My goal is to follow the same path. I am in a similar situation as McCormick (although I haven't had a new DEXA yet, so I am hoping to be under -3.0 at that point.) I go to the gym and I run, so I feel good. My hope is to just keep my bones good enough without having to be on meds for years. I'll know more over the next three months when I have my Echolight and DEXA scans. My six-month P1NP wasn't exciting but I feel like it's not telling the whole story. We will see...

I read these posts and it just makes me sick. Everybody has a different idea about how to deal with their deteriorating bones. Yes, some have been helped by Reclast and other bone drugs, but many have been harmed. There is no definitive protocol. The only protocol is a drug salesman coming into the doctor's office and saying "Here, try this." I agree with Windyshores, "We are all basically experiments." More in depth research has to be done before they infuse another unsuspecting patient. I've been dealing with these side effects for a year and a half. I worry most about the 80 year olds. They don't have time to deal with the side effects of a drug that was supposed to help them.

@njx58 I assume you are hoping to be "over" -3.0 not under 🙂 My P1NP's are all disappointing yet my DEXA showed dramatic gains. Hope that's true for you!

@dingus since you quoted me, I just want to make sure that my comment is not misinterpreted. Protocols change and some of us make our own protocols (a positive in my book) and research is ongoing. So yes we are all experiments in a sense but I did not mean that is a totally negative thing: the main thing is that people know they can work with a doctor on customizing their path.

I would reverse what you said and say that "Yes, some have been harmed by Reclast and other bone drugs, but many have been helped." I fear that too much negativity will dissuade people from trying medications which can be literally life-saving and certainly life quality- saving for many. I say this as someone who, yes, has side effects, but has also experienced the long term misery of fractures.

Doctors and drug companies do a lot of good. My kid has been on insulin since age 4 and would have died 30 years ago without it. Anti-epileptics have saved her from seizures. My other kid has asthma. Drugs go through a lot of trials but yes post-marketing use shows the real up and downsides.

They did not know that bisphosphonates could cause jaw necrosis or atypical femur fractures when it was first approved. They did not know that Prolia has such a vicious rebound. They did not know that Evenity was anabolic only in the first months. On the other side, they were not sure if Forteo and Tymlos could cause osteosarcoma, and neither has.

Any medication that is relatively new is still being tested, basically. Does that mean a drug salesman is in control? No. Does that mean we should take calcium and Vitamin D and avoid meds with scores below -3.0, no.

I think what would help a lot is if doctors learned more about side effects so they could listen empathetically and work to make protocols flexible. Right now pharmacists know more, but the local pharmacist doesn't deal with most bone drugs at all.

I am always concerned for lurkers and for all those who come on here feeling terrified of drugs. I was too. I want others to feel motivated to try before fracturing like I did. I cannot even lift a bottle of seltzer without pain. That said some of us have sensitivities and comorbidities and truly cannot take certain drugs. For anyone new, with bad scores, I hope you will at least try.
Most people do fine on Reclast or whatever drug you choose, and don't post on forums. I post here because I fractured!

Windyshores, We're probably on the same wave length. But when I call a doctor and say I think I'm having side effects from Reclast, I think they should try to find out if it is from the Reclast. That would go right along with your belief that there is research being done along the way. None of them suggested I come in for an exam. Can't do research if you don't examine the patients who are having problems with the drug.

@dingus I agree we are probably on the same wave length. I don't think doctors have any way to know if a side effect is from Reclast other than googling just as we do (and some of them don't do that!). An exam won't answer that either. I am fortunate to have a doctor who cooperates with my sensitivities but even he said "I have never heard of that" when I described a side effect. I think that doctors' tendency is to wish and hope that a drug will be tolerated (and work) out of concern for the health issue and view it as up to us to decide if it is not possible to continue. My doc actually said that: "It is up to you to decide if the side effect is so bad that you need to stop."

I am having a neuro issue right now involving facial pain and numbness. It could be autoimmune (I have two autoimmune disorders), it could be an acoustic neuroma, it could be from my neck stenosis, it could be from paraneoplastic syndrome (I had that before with cancer and it might signal more) and yes it could be from Reclast.

So many of us have complex situations. I am so overwhelmed trying to figure out which doctor to help- so far none have- so I am not a Pollyanna about limitations of doctors! I am meeting with PCP about a strategy. Perhaps we all need to evaluate each side effect one by one and by process of elimination, get to Reclast as the culprit. I don't see how any endo can say that without us going to a lot of other specialists unfortunately.

@dingus
this ongoing conversation with windyshores is quite helpful.
She has some excellent doctors. Many of us haven't tried that, yet. And it alters prespective. I also think that the drug manufacturers play a heavy hand with some physicians. The FDA is playing a part, I think, approving medications prematurely and at our peril.
I would also say that we trust our doctors incorrectly. We should try to understand that they actually don't know. We can read the same reports that they are reading and make as much sense of the reports as they can. For the most part, they are not reading the reports. They are looking at guidlines provided by
It is harder the older we are partially because we (some of us) didn't grow up with the ability to research--the internet. I remember being denied the package insert by a pharmacist and refusing the medication without it. I even had a PDR but wanted the latest version from the manufacturer. Many of us grew up trusting that the doctor would know.
I say trust your physician to give you the best care that they are capable of but recognize that it may not be good enough.

Honestly, treating osteoporosis is a specialty in itself, but finding good doctors who do that is not easy.

@genlty exactly and well put: our doctors don't know. Mine says that all the time. They don't know how some of the drugs work, they don't know how bone markers play into treatment, they don't know what to do long term, and they aren't as aware of side effects as we assume- in any specialty. The key is to find doctors who will work with us. I prefer a doctor who says "I don't know" to be honest, vs one who pretends or has incorrect info.