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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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kristie2 | @kristie2 | Jun 17 1:48pm
In reply to @windyshores "@susanjane77 I am sorry my post was not clear. My short term reaction to Reclast was..." + (show)
@windyshores

@susanjane77 I am sorry my post was not clear. My short term reaction to Reclast was not "terrible" or "intolerable" and I was trying to make that point. I expected to feel poorly for a few days. Up to 30% do. Small price to pay for someone who knows what fractures do. I am already planning my next infusion with my doctor.

Again,while I post about short term effects, I worry about people then feeling scared to take Reclast. That is not my intention at all. Reclast is the best way to lock in gains from other medications and stay safe. I am sorry if my post was misleading.

That said, sympathies to those who have longer term effects, which are rare but very difficult.

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Susan,
How often are they having you do the Reclast infusions?

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windyshores | @windyshores | Jun 17 6:47pm

@kristie2 was this question meant for me? If so...1 mg last week, 1 mg in 3 months, 2-3 mg in another 3 months...after that I am not sure....that will add up to 4-5mg, and 5mg is the full dose for a year....

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mayblin | @mayblin | Jun 17 10:59pm
In reply to @windyshores "hi @mayblin. I did two years of Tymlos and had a DEXA after 18 months. I..." + (show)
@windyshores

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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@windyshores if you are considering repeating anabolic therapy in the future, I think a dexa right now will provide one piece of vital info, of the effect of short term 4mo evenity on you. Do it now before bmd affected by recent reclast infusion? My take

Repeating tymlos seems ideal since you responded to it magnificently, although the prospect for its extended usage isn't clear yet. Assuming the last 6 mo (19-24) of tymlos didn't have much of anabolic effect (don't know for sure, but for some ppl this is true, forteo more so than tymlos), your dexa scan at one year (now) from last one would reflect mostly evenity's effect. Knowing how you fare with evenity will give you a good base for future decision making.

Repeated use of anabolics after bisphosphonates especially prolonged exposure, is an untested field for sure since forteo's lifetime usage limit was lifted not that long ago. We sure can wish active studies are being conducted and many work get published soon. Meanwhile anecdotal counts and shared experiences on this forum will shed some lights.

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1 reply
susanfalcon52 | @susanfalcon52 | Jun 18 6:36am
In reply to @windyshores "@rjd the first half of Evenity is bone building and the second half, roughly, is anti-resorptive...." + (show)
@windyshores

@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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windy,
Are you fully recovered from your Reclast infusion?
Symptoms subsided?
I have my Reclast infusion Thursday. Anxious.

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3 replies
windyshores | @windyshores | Jun 18 6:47am
In reply to @susanfalcon52 "windy, Are you fully recovered from your Reclast infusion? Symptoms subsided? I have my Reclast infusion..." + (show)
@susanfalcon52

windy,
Are you fully recovered from your Reclast infusion?
Symptoms subsided?
I have my Reclast infusion Thursday. Anxious.

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@susanfalcon52 yes fully recovered! Fever was minor really. I took a long walk yesterday 🙂 Good luck. Make sure to hydrate and take tylenol before and after. You can ask for a one hour infusion too.

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1 reply
loriesco | @loriesco | Jun 18 9:07am
In reply to @kgrainger "They ran all kinds of test Like MRI and blood work. They sent me home after..." + (show)
@kgrainger

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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I had a horrible reaction to class. I was delirious for two days in bed. The nurse practitioner recently said that having an extreme reaction is good. It means the medicine is working and that a lot of people have extreme reactions the first time. Now I am on Tim for two years and then I will go back to the rec class, I think three years in a row and then then I’m done for the rest of my life. None of this is very much fun. I hope it Works for us all!

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loriesco | @loriesco | Jun 18 9:09am

I had two days of delirium and flu like symptoms. The nurse practitioner told me it was a good sign that the medication was working. I thought maybe I had done it too close to my spine surgery. I’ve never had a reaction to anything like that in my life, so know that you’re not alone! PS she said it can happen the first time, but it doesn’t seem to happen after that.

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loriesco | @loriesco | Jun 18 9:11am
In reply to @susanfalcon52 "windy, Are you fully recovered from your Reclast infusion? Symptoms subsided? I have my Reclast infusion..." + (show)
@susanfalcon52

windy,
Are you fully recovered from your Reclast infusion?
Symptoms subsided?
I have my Reclast infusion Thursday. Anxious.

Jump to this post

Hi Susan! They told me afterwards that before the Reclast infusion you should hydrate and take Tylenol. If you can take Tylenol. Some thing that would reduce flu like symptoms in advance ask your doctor and good luck!

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drsuefowler | @drsuefowler | Jun 19 9:35am
In reply to @windyshores "@susanfalcon52 yes fully recovered! Fever was minor really. I took a long walk yesterday :) Good..." + (show)
@windyshores

@susanfalcon52 yes fully recovered! Fever was minor really. I took a long walk yesterday 🙂 Good luck. Make sure to hydrate and take tylenol before and after. You can ask for a one hour infusion too.

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@windyshores, How long did you have discomfort after the 20% Reclast infusion? I'm so glad that you are now feeling better!

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2 replies
windyshores | @windyshores | Jun 19 10:20am
In reply to @drsuefowler "@windyshores, How long did you have discomfort after the 20% Reclast infusion? I'm so glad that..." + (show)
@drsuefowler

@windyshores, How long did you have discomfort after the 20% Reclast infusion? I'm so glad that you are now feeling better!

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@drsuefowler just a few days....never drank so much water!

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