Reclast side effects

From something else, I gathered that FDA had 5 business days to respond. Helene may throw a monkey wrench in that if FDA staff are affected.

Thanks to everyone who responded to my post. I will consider all suggestions. I was talking to an attorney friend of mine and she said that there is a class action law suit against Reclast. But what I need is a doctor who can help me through these side effects. I'm going to take awfultruth's advice and see if I can find one on medifind.com. Wish me luck. They might all be hiding from the lawsuit. Every doctor I've asked about it so far (and there have been several) have the same answer, "No. Not the Reclast."

You can google law suits. Some of them are old. I don't think they will win but it's good to put companies on notice. Reclast does help a lot of people and some of us are harmed.

@dingus can you tackle each side effect one by one? I am dizzy a lot. And have pain. And some GI effects. My tinnitus is worse. I am trying to deal with each while deciding whether to continue.

I don't post often about my reactions because I am so sensitive and I don't want to discourage others from trying meds. At the same time we need a place to share and vent, especially when doctors don't listen to our side effect stories.

Windyshores, Trying to get this out to you and I just lost a couple of paragraphs. Trying again. I want to say first of all that I hadn't read anything regarding Reclast side effects when I started experiencing these pains etc. I had the infusion in February of 2023. The day after, I woke up with major pain in my shoulders. I've never had shoulder pain. It got better over the next couple of weeks. Then I started having excruciating pain in my right foot when I went from a sitting to a standing position. I called my PCP and told her I needed an x-ray because I thought my foot was broken. The x-ray showed nothing. Since then, the shoulder pain has subsided but the foot pain has come back about three times. It lasts about a week each time. Other side effects that I've had since the Reclast infusion are weak legs, swelling in feet, pain in legs, and toes (toe pain so bad I sometimes cannot sleep) numbness in my right leg, dizziness (serious dizziness) cold sweats, unable to regulate my body temperature, headaches. These all come and go. Thank goodness they don't all come at the same time. I've talked to several doctors of different persuasions, but no one can give me a good answer as to why I'm having these side effects (Of course, I'm convinced it's the Reclast due to the sequence of events), or, more importantly, how to fix the problems. It stays in your body for five years. Is this what I have to look forward to for the next three and a half years?? WindyShores or anyone, let me know if you have any questions.

@dingus I do not remember this whole thread so if what I'm going to say is a repeat please excuse me. I just want to suggest that you not put all your eggs in the Reclast basket. But to leave open at least a small possibility that it could be something else going on and that something else could be important to know about. I'm not doubting your symptoms and the sequence of events certainly points to Reclast but sometimes we can be mislead by the sequence of events.

Example: my wife has had 2 knee surgeries and a torn hamstring that she never fully recovered from, all in her left leg. When she started having more weakness in her left leg we assumed it was related to all the past trauma in that leg. She started seeing orthopedic doctors and sports chiropractors and doing physical therapy and other body work. Nothing helped and she started having more trouble coordinating movement in that leg. Finally the PT said to her "this is not right, your muscles are stronger and you are not improving, you need to see a neurologist". Well, she had Parkinson's. Within a minute of walking into the neurologists office he said "it looks like you have Parkinson's but we'll do tests to confirm that". None of the orthopedic docs or the chiropractors had even thought of this. Nor had we. We were all mislead by the prior traumas to her leg into thinking that the previous physical traumas to her leg were the cause of the current issues.
Just in case anyone thinks I'm suggesting you have Parkinson's or some other terrible disease - I'm not suggesting that. Only offering this as an example of how we all can be mislead including the doctors. Best of luck to you in finding a solution

@dingus it might help to know the half life of Reclast is 146 hours.
https://www.ncbi.nlm.nih.gov/books/NBK585053/
So it is basically out of your system in a couple of weeks.

The effects can last years and I recently read that it is slowly released from the bones.

I don't think anyone knows how long side effects last and surely it is individual. I know my doctor doesn't. I hope there are posts on this forum that help you anticipate that.

One question I have is whether there an immune/autoimmune/allergy component for those of us who suffer side effects. I had a 20% dose, twice, and have quite a few myself. They do same to fade or at least change over time.

In the meantime we can only tackle each side effect one at a time.

I was at the cardiologist Monday and when I handed the Nurse Practitioner my list of meds, she asked what ‘Reclast’ was.
I told her. She googled it right in front of me and said, “Wow.”
She then did a pretty deep dive to see if my bradycardia was connected to Reclast. She seemed to decide that it wasn’t.

"Bradycardia: A rare side effect, occurring in less than 0.1% of Reclast patients."
Do you think the "wow" was the number of side effects.

Great recommendation for PT.

@susanfalcon52 heart issues with osteoporosis medications seems to be a crack that we fall through. When deciding between Tymlos and Evenity I saw three cardiologists (long story) and the only info they had was on Google. On the other hand endos and rheums don't know much about the heart.

Heart arrythmias are on the side effect list for Reclast. Bradycardia is an arrythmia I guess but I know my doc was more concerned with my afib, which happens dramatically once a year so far. In fact he did not prescribe the usual Reclast with my cancer treatment for this reason. He has since been satisfied it is safe in that regard.

Still I think it is kind of a case of where there is smoke there is fire and I don't think any doctor or NP can confidently tell you that Reclast is now slowing your heart rate. They simply cannot know.

The main thing is to assess and treat it and consider other causes. If it is really low that needs to be addressed regardless of cause!

I have had two infusions of 1 mg so far and no afib so far. Kidneys are stable. But I have had other things happen: increased tinnitus, pins and needles, GI. I cannot ascertain for sure if these are from Reclast either. My endo will no doubt express that he hasn't heard these (listed) effects from anyone else!