Reclast Infusions: Side-effects & Recovery time

Posted by cindydee @cindydee, Mar 20, 2018

I just had a reclast infusion last week and have had serious side effects. I had the worst flue like aching for 5 days then my lefty arm became full of inflammation in the wrist, elbow and shoulder which caused extreme pain and I lost the ability to straighten my elbow. Ultrasound showed huge amounts of fluid throughout the arm. The right arm is now starting to have the same symptoms. The pain is excruciating. Has anyone else experienced anything like this? Neither the ER doctor nor the Dr. who prescribed the procedure knew what to do to ease the symptoms. Both arms from fingertips to shoulder are swollen and neither elbow will straighten. Anyone else have adverse reactions to the reclast infusion? If yes, how long did it last?

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

Also, I drank a lot of water before each infusion. That may have helped minimize side effects.

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@pcjarvis

I had a T-score of 4.9. I took Prolia for 2 years with absolutely no improvement in my T-score. I was then started on Forteo and developed high blood calcium levels after the first month. I have taken Actonel in the past which produced sever GERD to the point where my vocal chords were burnt.
My rheumatologist now wants to start me on Reclast infusions which, like Actonel, is a biophosphate.
I am scared to death to have something infused which will stay in my body for one year, especially with my history of complications with Osteoporosis drugs.

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I had Reclast this last February 28th. I am still having pain. I will never have this infusion again. The first two weeks I was in terrible pain. I have arthritis and the Reclast hit my arthritis so hard I couldn't function. I am still having lots of pain and swelling.

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I stopped taking Evenity after the 9th dose due to increasing joint pain in my right hand and a bit in my left wrist. I took Reclast, which I have taken before with no problems, within 3 days my right hand had more joint pain and stiffness. Within 2 months I have pain in my left hand and the index fingers and the base of the thumbs plus my middle and ring fingers. It does get better as the day goes on. Now 3 months since my Reclast infusion I am starting to feel some stiffness in my toes. It is just really strange that this seems to be taking a slow walk through my various bones. To say the least I won't be taking it again but what to do next is an issue but more importantly at this point is how long will this last?

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@ann707

I stopped taking Evenity after the 9th dose due to increasing joint pain in my right hand and a bit in my left wrist. I took Reclast, which I have taken before with no problems, within 3 days my right hand had more joint pain and stiffness. Within 2 months I have pain in my left hand and the index fingers and the base of the thumbs plus my middle and ring fingers. It does get better as the day goes on. Now 3 months since my Reclast infusion I am starting to feel some stiffness in my toes. It is just really strange that this seems to be taking a slow walk through my various bones. To say the least I won't be taking it again but what to do next is an issue but more importantly at this point is how long will this last?

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Is it possible for you to take a break from meds? I just read, in Keith McCormick's book, that the first 3-4 months of Evenity have the most gains.

After Tymlos, my doc thought I could do one Reclast and then take a break if monitoring was okay.

Maybe you won't need another Reclast or even another med?! At least for a good while?!

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@ann707

I stopped taking Evenity after the 9th dose due to increasing joint pain in my right hand and a bit in my left wrist. I took Reclast, which I have taken before with no problems, within 3 days my right hand had more joint pain and stiffness. Within 2 months I have pain in my left hand and the index fingers and the base of the thumbs plus my middle and ring fingers. It does get better as the day goes on. Now 3 months since my Reclast infusion I am starting to feel some stiffness in my toes. It is just really strange that this seems to be taking a slow walk through my various bones. To say the least I won't be taking it again but what to do next is an issue but more importantly at this point is how long will this last?

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Did your insurance (and for sure Medicare) refuse to pay for a Prolia injection.

Your pain and side effects, and the other outcomes in this forum are uncalled for.

When there is a safer and better alternative, the medicine your doctor probably thought of first, Prolia, should be attempted if you haven’t had a reaction to it of course.

Does anyone here have a “for sure” horrible story about Prolia? It works in a totally different way. I’m trying to get it.

The bad reactions you have had at least count as a failed attempt on the Prior Authorization form your doc needs to fill out to now get you a different, alternative med of your choice!

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I just had my first Reclast infusion. About 36 hours after the infusion I experienced some shivering and felt achey. I took some Tylenol. It started a couple of hours before bedtime and when I woke up it was gone. Hopefully that will be the end of it. I have been on Prolia for several years and it took me into normal bone density for a woman my age (63). I'm going off it for awhile and was prescribed Reclast to make the transition and avoid rebound fractures.

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@jb123mayo

I just had my first Reclast infusion. About 36 hours after the infusion I experienced some shivering and felt achey. I took some Tylenol. It started a couple of hours before bedtime and when I woke up it was gone. Hopefully that will be the end of it. I have been on Prolia for several years and it took me into normal bone density for a woman my age (63). I'm going off it for awhile and was prescribed Reclast to make the transition and avoid rebound fractures.

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Jb123mayo, how long did you take Prolia? And how long were you off Prolia when you were given Reclast?

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I took Prolia several years--maybe 6? 7? I had my last Prolia injection in January. My doc wanted me to have Reclast before the Prolia wore off entirely.

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Keith McCormick's new book "Great Bones" has info on how to transition from Prolia to Reclast. He says that if the Prolia is still active 6 months after your last injection, the Reclast won't work. That means there is potentially a period after that Reclast when you are losing bone via rebound.

But then again, if you wait 9 months after the last Prolia, there could have been a rebound bone loss starting 5 months after that last injection.

People really vary in their response and the length of their response to Prolia, he writes. The drug company (Amgen) suggested Reclast after 6 months from studies but there is variability and timing is important.

He writes that delaying Reclast for even 4-16 weeks after Prolia wears off can increase fracture risk.

DEXA's measure bone density but quality is important too. For that reason he says that repeat CTX tests (every 4-6 weeks) during this period after stopping Prolia are essential to determine when Prolia has worn off, which is when Reclast is then effective and should be started immediately.

Another CTX should be done one month after Reclast, and again 3-6 months after and a repeat infusion should be done if CTX continues to rise meaning continued bone loss.

My doc doesn't do CTX at all. I did have a baseline done, suggested by Dr. McCormick. I imagine this info is right on target but we need docs who will do this!

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@jb123mayo

I took Prolia several years--maybe 6? 7? I had my last Prolia injection in January. My doc wanted me to have Reclast before the Prolia wore off entirely.

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Jb123, I asked the questions to understand how your doctor determined when to start Reclast. Did your doctor follow Keith McCormick's method (see Windyshores comment re timing) or another method?

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