@shrinkette, and all...I'm sorry you're having this reaction. Weekends are always fun, aren't they? That's when I get a UTI, or bronchitis, or pneumonia, or ????? No doctor is available...I had my 1st Reclast infusion last year but didn't have any stomach side effects as I recall. Possibly some intestinal issues as I frequently have that with meds.
My entire body reacted severely to this medication. I had the infusion on a Friday, which will not happen again. I live alone and the week-end was terrifying. After getting the infusion and about 8 hours of feeling fine at home, I began to have increasing all-encompassing pain throughout my body, every muscle, every joint, my head ached, nausea with no vomiting, I had a low-grade fever, sweats, and was hot to the touch, and had every kind of reaction...But, my tongue didn't swell, my throat didn't close or swell, my breathing was ok, no heart or chest pains, no hives or rash, etc., so after online research, I supposed I was not having an allergic reaction to the Reclast. My immune system was reacting to an unknown intruder...rather violently from my point of view.
At 3 a.m. Saturday, I called the Mayo Clinic Florida to speak with the on-call doctor in endocrinology. Yes, I made a conscious decision to wake up a doctor and ask questions to verify my conclusions. I was completely alone! I had no one to discuss or share any of what was happening, what I was experiencing, or to discuss my decisions and verify them for me. It was a great conversation, the doctor was very helpful and reassuring. She assured me my thoughts made sense, and that I was making the best choices. I suggested it wouldn't do any good to go to the ER for help. What would they do that I wasn't doing at home? She agreed. So, I took Tylenol, drank my filtered water, drank electrolyte water, and stayed in bed in a lot of pain no matter what position or how I lay there...It was a difficult, horrible week of pain I thought would never end, with moaning and tossing and groaning. But, I knew what was happening and why and accepted that it was ok. My body, whenever it came out of this fight mode, would be better for the medicine that would hopefully keep me alive a bit longer, and my bones from breaking increasing the chances of an earlier and painful death.
I hope this makes sense to some of you. It's taken a long time, and been a difficult journey to get to this place of acceptance in my thinking. But, it's a great place to be.
Interestingly, I had decided to have the 2nd Reclast infusion this year no question. Now, after the year I've had with 2 difficult and physically challenging colonoscopies, 2 bouts of Covid infection since July 2023, bronchitis, new diagnoses of PMR, GCA, and another very rare autoimmune disease, Covid pneumonia, and all the other stuff we all experience, I've decided my body is too fragile to go through the possible reaction to Reclast a 2nd time. So, I'll decline to have the 2nd infusion. I will also decline any more colonoscopies or any other invasive procedure that I don't think will lead me to a more pleasant, peaceful, and acceptable life for the rest of my life.
I am proactive. I have choices. I will decide what is best for my life. I think it was wise to have the Reclast last year. I think, in my situation, with my body fragility, it is best for me to not put myself through any more unnecessary discomfort or pain. Isn't this a wonderful place to be, mentally, emotionally, and spiritually? I love it! I'm grateful!
Blessings to all, Elizabeth
@es77
So sorry that you had to go through all this.
I totally feel for you and the pain you have to endure.
At his point, I’m not sure if the cramps that I’m experiencing are related to the Reclast infusion.
Still playing phone tag with my doctor.