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Reclast Infusion for people with autoimmune diseases
I received my first Reclast infusion 2 days ago. I opted for the 2.5mg half dose with 1 hour infusion. I felt fine immediately after the infusion for the first 12 hours. I woke in the night to shaking chills, fever 101, extreme nausea, felt like back of my skull was hit by a sledgehammer. The next morning the rib and spine pain began. This is a pain level that I cannot describe. I was screaming at the waves of pain and spasms in my back. It felt like my ribs were breaking from within. I am on day three now. I will never do this again. Thank God I opted for the half dose. If not I’m sure I would have been hospitalized. I do suffer from multiple autoimmune diseases. This should have never been recommended for someone like me. Beware.
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aberg, thank you for joining us with this amazing warning.
Some have this intense reaction for a week and then it resolves, but for others it lasts the full year or longer. You might call your physician and ask for a 5 day steroid dose methylprednisolone (Medroldosepak), said to be less damaging to your bones than the intense inflammation. I'm so sorry you are having this reaction.
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2 Reactions@gently thank you. I have a call in to him now. We’ll see what he recommends.
@aberg
Just wondering... if there are no contraindications, do you think it might help to increase your water consumption somewhat if currently low?
Previous discussion regarding Reclast prep questions:
https://connect.mayoclinic.org/discussion/reclast-prep-questions/
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1 Reaction@tillymack yes I increased my fluids but that seemed to make the back pain substantially worse. I’m thinking there’s some kidney inflammation going on. Things are settling down in the last few hours. Hopefully it continues to get better.
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1 ReactionHow about making an appt with your PCP to test your kidney function, sooner rather than later?
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1 Reaction@tillymack My endocrinologist hasn’t responded yet but he may very well recommend that. Both my rheumatologist and endocrinologist were ok with the infusion. In hindsight this was a bad idea.
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2 ReactionsMy endocrinologist responded and sent me for blood and urine tests to check kidney function. Waiting on results. He said that in the 20 years he has prescribed Reclast this is an uncommon but unfortunately hard hitting response for some people. I happened to be one of them. I’m on day 4 and still have a low grade temperature, body aches, headache and fatigue but the pain is gone. Hopefully things will continue to improve. Thank you all for the support.
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2 ReactionsMy results came back for occult blood 2+ urine and high blood sugar 126. Waiting on doctor’s response. Still flu symptoms, headache and mild back ache but otherwise doing ok. Day 5.
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1 ReactionI have CIDP and had reclast done about one month ago lm full of aches and pains is it from that don’t know if it’s bone or muscle
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1 ReactionDay 6 and I am back in the land of the living. Only took Tylenol once last night for headache but other than a little fatigue I am functioning again. Yesterday I did have the frightening symptom of my jaw tightening up near my throat. Scared me straight. I hope the worst is over. I will be pursuing other options going forward. Reclast for me is over.
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