Reclast side effects

Posted by dingus @dingus, Aug 15 2:24pm

Does anyone have a solution to combat Reclast side effects. I had the infusion a year and a half ago and the side effects started shortly after I had the infusion. I still have weak legs, swelling in feet, pain in bones, dizziness (serious dizziness), cold sweats, tired all the time and nervous twitching in bones. Any suggestions?

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@dingus

I mentioned a few days ago that I was going to a new endocrinologist on Monday 8-19-24. I mentioned to her that I had serious side effects from a Reclast infusion. She immediately went into a discussion of taking calcium and vitamin D. Yeah. Been doing that for years. I even had a list of my side effects on a piece of paper in my hand. She didn't even ask to see it. And before I could show it to her she was packing up her notes and getting ready to leave the exam room. On the way out I asked my boy friend if she had said anything about Reclast. I thought I missed something. He said "No. She hadn't mentioned Reclast." I was the only one who mentioned it. She had no comment. And that was the reason I was going to her...to get some answers regarding Reclast. Strange. What are these docs afraid of?

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@dingus You are not alone! What they're afraid of, imo, is that we understand that they merely prescribe drugs according to what the sales rep and the literature from the pharmaceutical company (Big Pharma) tells them. They don't consider the side effects because they are told that they are "minimal." I would also venture to guess that they get financial support for prescribing the drug. I'm a retired RN, injured by Reclast and this is my opinion.

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@barjar

I have had bad side effects from
Evenity, but no side effects from
Reclast. And I have had very
good results after only one
Yearly infusion . My numbers
Improved for my spine and did
Not decline for my hips. I’ve
just had my second Reclast infusion and I feel fine.

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That's very encouraging. I have been extremely reluctant, but after much research and blood work, scans, and referral to endocrinologist, I have finally accepted that I will start Reclast. I am on the wait list for my first infusion this month. I'm so encouraged that you have had no Reclast side effects!

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@dingus

To Awful Truth and Gently...Lots of technical information here, but for those of us on this post who have already had the Reclast infusion, and are suffering greatly and daily from the side effects, we need to know how to fix the problem. I work and have not been able to put in a full day since I had the infusion in February of 2023. And I can't find a doctor who will agree that the side effects are from the Reclast. Until I do I won't be able to get any help from a doctor. Even if it's only 1% of us we deserve some help.

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I agree. I am sorry that you are in this situation. I was in a similar situation with severe nerve damage in my arm after a flu shot in Oct. 2023. I have always gotten flu shots so this was really bizarre. My doctor did believe me and referred me to a neurologist. I was despondent because of lack of sleep and extreme pain. One thing that finally gave me some hope was the PT who said, "You will get better." The exercises didn't help, but her words of encouragement and belief in me made a huge difference. It took 9 months but the nerve pain did heal.
I hope you find someone who will listen and give you hope.

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@lkhender

@dingus You are not alone! What they're afraid of, imo, is that we understand that they merely prescribe drugs according to what the sales rep and the literature from the pharmaceutical company (Big Pharma) tells them. They don't consider the side effects because they are told that they are "minimal." I would also venture to guess that they get financial support for prescribing the drug. I'm a retired RN, injured by Reclast and this is my opinion.

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And if you take several of those "minimal" side effects and stack them on one patient at one time, that patient has a real problem. I'm sure you saw plenty of that as an RN as well as in your own situation.
What great insights. I'm going to try to get an appointment with an immunologist. Hopefully I can find someone that has some knowledge of Reclast side effects and is willing to share it.

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@kar50

That's very encouraging. I have been extremely reluctant, but after much research and blood work, scans, and referral to endocrinologist, I have finally accepted that I will start Reclast. I am on the wait list for my first infusion this month. I'm so encouraged that you have had no Reclast side effects!

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Good luck!

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@lkhender

@dingus You are not alone! What they're afraid of, imo, is that we understand that they merely prescribe drugs according to what the sales rep and the literature from the pharmaceutical company (Big Pharma) tells them. They don't consider the side effects because they are told that they are "minimal." I would also venture to guess that they get financial support for prescribing the drug. I'm a retired RN, injured by Reclast and this is my opinion.

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Agree with your comments re docs/remuneration and Big Pharma @lkhender - I have been prescribed oral meds, Reclast, Tymlos, and Evenity.

I had horrible (NOT minimal) problems with Tymlos, but none with Evenity or Reclast and I’ve had at least seven lifetime infusions of Reclast. I did not want to begin Prolia and appealed to my doc to have one more Reclast infusion instead. It’s important to know that it’s not a one-size-fits-all issue.

Even with my constant messages to the doc to complain about the debilitating issues I was having with Tymlos, he recommended PT, pain management, an endoscopy . . . I suppose because the adverse reactions I was having were not listed on the Radius website, they couldn’t be related to the med 🙂‍↔️. After finally telling the doc I was pretty much finished with Tymlos, I stopped the injections, my symptoms cleared up within days and I found a new doc!

I guess that’s part of the beauty of Tymlos: the med doesn’t stay in one’s system long term and once there is cessation, the reactions clear up quickly . . . so there is that! Reclast and Evenity last longer - to the point where there is much information dedicated to how long Reclast remains in the body. Btw, after contacting Radius, some of my odd symptoms were added to the published list; not sure why.

Stay sunny everyone! Listen to your gut and do what’s best for you. 🌞

Cheers!

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@beanieone

Agree with your comments re docs/remuneration and Big Pharma @lkhender - I have been prescribed oral meds, Reclast, Tymlos, and Evenity.

I had horrible (NOT minimal) problems with Tymlos, but none with Evenity or Reclast and I’ve had at least seven lifetime infusions of Reclast. I did not want to begin Prolia and appealed to my doc to have one more Reclast infusion instead. It’s important to know that it’s not a one-size-fits-all issue.

Even with my constant messages to the doc to complain about the debilitating issues I was having with Tymlos, he recommended PT, pain management, an endoscopy . . . I suppose because the adverse reactions I was having were not listed on the Radius website, they couldn’t be related to the med 🙂‍↔️. After finally telling the doc I was pretty much finished with Tymlos, I stopped the injections, my symptoms cleared up within days and I found a new doc!

I guess that’s part of the beauty of Tymlos: the med doesn’t stay in one’s system long term and once there is cessation, the reactions clear up quickly . . . so there is that! Reclast and Evenity last longer - to the point where there is much information dedicated to how long Reclast remains in the body. Btw, after contacting Radius, some of my odd symptoms were added to the published list; not sure why.

Stay sunny everyone! Listen to your gut and do what’s best for you. 🌞

Cheers!

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@beanieone did you ever try going down on the dose for Tymlos?

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@lkhender

@dingus You are not alone! What they're afraid of, imo, is that we understand that they merely prescribe drugs according to what the sales rep and the literature from the pharmaceutical company (Big Pharma) tells them. They don't consider the side effects because they are told that they are "minimal." I would also venture to guess that they get financial support for prescribing the drug. I'm a retired RN, injured by Reclast and this is my opinion.

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What did reclast do to injure you? I may have to go on it and am curious?

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@windyshores

@beanieone did you ever try going down on the dose for Tymlos?

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Unfortunately, @windyshores, I didn’t know about the decreased dosage prior to joining this forum. It is interesting that the same dose is prescribed for all of us - perhaps the “8 clicks” builds bone faster in smaller people (of which I am one) - who knows!? If I ever need to avail myself of Tymlos in the future, I’ll be sure to use the “Windyshores Method” 😆.

Cheers!

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Can we discuss further the suggestions for hydration, Tylenol, allergy meds etc before and after the infusion. My questions/concerns are:
1) Some of you stated you hydrated at home before the infusion. Did you hydrate by drinking water or something
else plus water? Electrolytes? Or did you have an actual IV for hydration the day before? Of course, continue
to hydrate afterwards for several days.
2) What is the normal, most prescribed method of the Reclast infusion? Do they administer a bag of Saline first,
then the Reclast? Do they follow up with more Saline?
3 ) What is the length of time for the infusion of the Reclast? How much can this be slowed down? Does the Dr
have to include this on the RX order? I'm guessing so.
4). I'm aware of the discussions around cutting the dosages and/or spreading them out the course of the year. But
if my Dr doesn't do this, I might be setting myself up for serious adverse reactions.
5) CTX ? Baseline before infusion and then how often during the year after the infusion?
6). Do I need to increase my intake of Calcium, food or with a supplement in the weeks before the infusion? What about Vit D3 ?

Thank you for any suggestions!

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