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?

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@mayblin

Hi @windyshores very happy to hear that you are on your new leg of therapy and tolerated 1mg reclast well! Out of curiosity, did you have a dexa scan before your reclast infusion to assess the effect of 4 mo evenity (+a few months of tymlos)? Did you have your btms checked before (maybe after) reclast, even though your btms didn't appear to follow "normal" or average therapy trends? My apologies for the redundant questions as I may have missed many posts due to a long trip.

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hi @mayblin. I did two years of Tymlos and had a DEXA after 18 months. I am considering self-pay for a DEXA..next covered one is April 2025. My doctor doesn't do bone marker testing. As a result I have seen another doctor who does, and after several visits with McCormick (I have seen him for years) I had my PCP order them. But they have not been very useful and for now I have no need.

PINP was disappointing at 18 months with Tymlos (but I had no valid baseline since intended baseline was not fasting) and disappointing with Evenity (possibly I missed the peak but I doubt it).

It is a feeling of flying a plane in the dark with no instrument panel at times. I just watched a couple of videos- Paul Miller and a doctor with the IDF- and they say "we don't know" a lot. The whole field is full of "we don't know yets."

Noone has much to say about what to do after Reclast, besides a possible drug holiday followed by what?

My main concern now is being able to do an anabolic again after Reclast. I am going to ask about risendronate though my esophagus might not like it. I don't really trust my DEXA's after Tymlos. The gains were too large! And my femur neck was still -3.6. I might buy hip pads.

It may be possible to do another short burst (for me, others might do longer) Evenity after Reclast. Guess what? They don't know yet!

Hope you had a nice vacation. You were missed here!

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I ended up in the ER within 8 hours with severe spine pain. It lasted about 5 days. It was horrible pain so I chose not to take another infusion. My doctors recommended a different rote and have on my medical records allergic to reclast.

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@kgrainger

I ended up in the ER within 8 hours with severe spine pain. It lasted about 5 days. It was horrible pain so I chose not to take another infusion. My doctors recommended a different rote and have on my medical records allergic to reclast.

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@krainger what did you do instead? Had you been on another drug before Reclast that needed to be "locked in"? Were you able to do an oral bisphosphonate or are you avoiding all of them?

I am interpreting pain right now as some sort of positive effect, but I don't have bad pain. I am kind of med Polyanna at this point! We'll see what happens...it hasn't been a week yet.

So sorry you went through that. I hope they gave you some pain relief. The Reclast stays in your body so you are probably still on it!

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@windyshores

@krainger what did you do instead? Had you been on another drug before Reclast that needed to be "locked in"? Were you able to do an oral bisphosphonate or are you avoiding all of them?

I am interpreting pain right now as some sort of positive effect, but I don't have bad pain. I am kind of med Polyanna at this point! We'll see what happens...it hasn't been a week yet.

So sorry you went through that. I hope they gave you some pain relief. The Reclast stays in your body so you are probably still on it!

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I have had 2 prolia injections since the reclast infusion and only had minimal side effects. The spinal pain I experienced from the reclast was in my T spine area and it still comes and goes.

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@windyshores

@rjd I took Tymlos for two years and Evenity for 4 months. After either drug, I was told Reclast was necessary (I cannot take Fosamax due to GERD, and Reclast does a better job of coating the bones). The mechanism of "rebound" is not the same at all as with Prolia. In fact, though I have heard that term applied to all these situations, I would actually just say that without Reclast, I would lose my gains from the other two medications- I was told in two years. The term "rebound" is probably best used for Prolia discontinuation!

I honestly think that Evenity is too new for the doctors to really know, and more research needs to be done. Since it is anti-resoprtive, I have read they are looking into whether Evenity works without Reclast and also whether Evenity could be done for 6 months and Reclast could replace the last 6 months of Evenity. None of this is anywhere near clear yet>

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Evenity is 'anti-resorptive?' I thought its claim to fame is that it is a bone-builder. If anti-resorptive, how does it differ from Prolia?

What does it mean that Reclast is better at 'coating the bones?'

Thanx windy.

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@rjd

Evenity is 'anti-resorptive?' I thought its claim to fame is that it is a bone-builder. If anti-resorptive, how does it differ from Prolia?

What does it mean that Reclast is better at 'coating the bones?'

Thanx windy.

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@rjd the first half of Evenity is bone building and the second half, roughly, is anti-resorptive. It works very differently from other medications. It inhibits sclerostin. People born with low sclerostin may have very positive DEXA's and very dense bones (too dense). So researchers got the idea it might help osteoporosis and studies were done.

All the anti-resorptives work via different mechanisms. That's why Prolia has a rebound problem while bisphosphonates are used to deal with rebound.

The language about "coating bones" is from Keith MCormick's book "Great Bones," where he basically says Fosamax and other orals give spottier coverage, so to speak, in terms of protecting against rebound. But orals are fine if Prolia is taken for a year or a year and a half, he wrote.

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@kgrainger

I have had 2 prolia injections since the reclast infusion and only had minimal side effects. The spinal pain I experienced from the reclast was in my T spine area and it still comes and goes.

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@kgrainer but you will need Reclast or an oral bisphophonate if you go off Prolia. We are all between a rock and a hard place! Maybe you can stay on Prolia long term-? Apparently Evenity is a possibility after Prolia but that requires a bisphosphonate too.

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@windyshores

@kgrainer but you will need Reclast or an oral bisphophonate if you go off Prolia. We are all between a rock and a hard place! Maybe you can stay on Prolia long term-? Apparently Evenity is a possibility after Prolia but that requires a bisphosphonate too.

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I guess I need to speak to my doctor since I am not educated on this at all. I need to know how long in can take prolia. I have only had 2 injections

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@kgrainger

I ended up in the ER within 8 hours with severe spine pain. It lasted about 5 days. It was horrible pain so I chose not to take another infusion. My doctors recommended a different rote and have on my medical records allergic to reclast.

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What did the ER do to help with your spine pain? So sorry you went through that.

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They ran all kinds of test Like MRI and blood work. They sent me home after nothing showed up and ruled it as a reaction to reclast. They gave me some muscle relaxers while there and I had to do heat and ice with Tylenol at home.

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