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

@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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@mayblin I asked about a DEXA a few weeks ago and MD responded next year. I could ask him with the caveat that I will pay if insurance doesn't. There is good reason medically to do one but my doc would have to write a letter.

The thing is, I think part of me doesn't want to know:) I had COVID and was in the hospital in November and for maybe three weeks did not do Tymlos. Then a few weeks of partial (tapering) and then Evenity Jan.6. My P1NP was not well-timed but showed no increase on Evenity.

My doc does not do bone markers and I occasionally have my PCP do them. But I think I have come to have a sort of macro/holistic view given all the factors to look at and my main goal is not to fracture. No fractures since 4/21. I get x-rays every once in awhile.

I am pretty sure my DEXA had a different "area of interest" and there are so many variables that I am not even sure a DEXA would help. I have kept a chart since 2001 and the DEXA's jump around a bit. People post about changes like -.1 or -.2 which just aren't meaningful at all.

With any testing, I ask, "will I change what I am doing?" The answer is no. So I tend to not do the tests! Slow medicine!

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@windyshores

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

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That's great! Good to know water helps.

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@susanfalcon52

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

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Susan ,
Will be wishing you well prayers on Thursday for minimal side effects. I’ll be next in a few months .

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Good luck tomorrow @susanfalcon52. Let us know how you do!

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@windyshores

@mayblin I asked about a DEXA a few weeks ago and MD responded next year. I could ask him with the caveat that I will pay if insurance doesn't. There is good reason medically to do one but my doc would have to write a letter.

The thing is, I think part of me doesn't want to know:) I had COVID and was in the hospital in November and for maybe three weeks did not do Tymlos. Then a few weeks of partial (tapering) and then Evenity Jan.6. My P1NP was not well-timed but showed no increase on Evenity.

My doc does not do bone markers and I occasionally have my PCP do them. But I think I have come to have a sort of macro/holistic view given all the factors to look at and my main goal is not to fracture. No fractures since 4/21. I get x-rays every once in awhile.

I am pretty sure my DEXA had a different "area of interest" and there are so many variables that I am not even sure a DEXA would help. I have kept a chart since 2001 and the DEXA's jump around a bit. People post about changes like -.1 or -.2 which just aren't meaningful at all.

With any testing, I ask, "will I change what I am doing?" The answer is no. So I tend to not do the tests! Slow medicine!

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I get your reasoning totally. It's interesting we only have about 10 osteo meds to choose from. However, if putting 2-3 problematic ones aside plus intolerability issues plus medical issues or many unlisted issues relating to a specific person, we are left with very limited choices. In some situations only one way going forward. My first thought was that it will be intersting to know 4mo evenity's effect on your bmd changes. But your clarification of altered tymlos dosing while having COVID (sorry you had so much to go thru!) might muddle with the dexa anyway rendering unuseful information anyway. You said it well not to frature is the ultimate goal!

All the best!

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Good morning Well Wishers,
So, I had the Reclast infusion yesterday morning. The nurse was great and knew that I wanted a slow infusion so that is what I got. I was very hydrated and Tylenoled up. Saline infusion after.
When finished, I took myself to lunch at my favorite Mexican restaurant.
Took Tylenol and drank water rest of day. At bedtime I took Motrin also.
I’ve been up 30 minutes and feel pretty good. No fever, I do feel achy, though.
I am going to attempt to have a ‘normal’ day.
So far, I feel pretty lucky.

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I’m due to have Reclast next week. I did not have any reaction last time. I would definitely contact the company the supplied the medicine. If your doctor is a rheumatologist he should know how to help you.

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@dkapustin

Hi there. Thanks, @JustinMcClanahan for adding me. I have Osteoporosis and tried supplements, diet, and exercise to increase my bone density but nothing worked. I was getting worse. I also want to add that I had been active for decades so weight bearing exercises (weights, walking, elliptical, tennis) still produced a 60 year old with weak bones. Blood tests showed a healthy parathyroid and calcium and Vitamin D levels. With all of that said, I realized that Osteoporosis was a disease. A progressive disease that sometimes needed medication. I didn't want to take the drugs either but I am currently taking care of my 83 year old mother who can only walk to the bathroom due to falls and untreated OP. I spent years in skilled nursing facilities and memory care units caring for my father with Alzheimers and I've seen the lives of those with brittle bones and I just don't want to end up that way. At 62, I've had my right hip replaced, am now recovering form a right knee replacement and will get the other one replaced next year. All as a result from Osteoarthritis which is the sister of the OP. I took Forteo for a year and had no side effects but had a problem with my insurance so switched to Recast. I had the infusion last year and I followed the 3 simple rules. 1. Drink tons of water days before, day of, and day after infusion. 2. Make sure they give the infusion over a 45 minute time frame. NOT the 20 minutes they normally do. If they refuse, get it done elsewhere. 3. Take a couple of Tylenol before going to bed. I had no horrific side effects and although I have joint blame, I couldn't never say with certainty that it is a side effect from the OP drugs. But if you do nothing, lean to heavily on social media and people calling the drugs poison, you may find yourself in trouble later on. All drugs come with risks and you have to weigh the risk/benefit ratio. If you do nothing and your bone density keeps decreasing every year, you will not have a good quality of life in your elder years. I am going to fight for my quality of health and take the drugs. I do know that Reclast should only be sued for about 5 years. I also know that at some point my life, I will probably have to get on Prolia but I'm trying to use all of the other drugs first. I plan on finishing the year of Forteo and staying on Reclast as long as possible. This is certainly something you need to discuss with your doctor. If you don't trust your doctor, find another one. I do recommend seeing an RA or endocronolgist to discuss your OP because they are more knowledgeable about the treatment options for OP. But please be cautious about listening to the people calling it poison. Make your own informed decision.

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Hello, I’m not sure I have it right.. Are you on both Reclast and Forteo at the same time? Your tips about the 45 min infusion & the other two are really interesting…why does a longer infusion time help? I wonder if the doc could first approve this ..rather than confront the tech guy on the day b off…interested in asking for this if I can understand why this helps…Thanks for helping !

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@susanfalcon52

Good morning Well Wishers,
So, I had the Reclast infusion yesterday morning. The nurse was great and knew that I wanted a slow infusion so that is what I got. I was very hydrated and Tylenoled up. Saline infusion after.
When finished, I took myself to lunch at my favorite Mexican restaurant.
Took Tylenol and drank water rest of day. At bedtime I took Motrin also.
I’ve been up 30 minutes and feel pretty good. No fever, I do feel achy, though.
I am going to attempt to have a ‘normal’ day.
So far, I feel pretty lucky.

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susanfalcon52, could you list what you did, and asked the nurse to do, to prepare for your Reclast infusion? Right now Reclast will be my follow up med after Forteo. Thanks.

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@sando

Hello, I’m not sure I have it right.. Are you on both Reclast and Forteo at the same time? Your tips about the 45 min infusion & the other two are really interesting…why does a longer infusion time help? I wonder if the doc could first approve this ..rather than confront the tech guy on the day b off…interested in asking for this if I can understand why this helps…Thanks for helping !

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sanfo,
Apparently, the longer infusion time is easier on kidneys. I had told the infusion nurse ahead of time that I wanted a longer infusion time. She cheerfully complied.

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