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?

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

@255anny

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!

Jump to this post

It's sad how little we all know about this drug and how to take it. But many of you have had good suggestions through this forum. Please pass them on to 255anny through this thread. Maybe we can save him/her some grief from side effects.

REPLY
@dingus

It's sad how little we all know about this drug and how to take it. But many of you have had good suggestions through this forum. Please pass them on to 255anny through this thread. Maybe we can save him/her some grief from side effects.

Jump to this post

Thank you! I haven't 100% decided to have the Reclast - but I want to be as informed as I can be. I finally have a follow up appt with my Dr next week.

REPLY

@255anny any discussion of reduced dosages spread out over time is my fault. My doctor wanted to do that because of my kidney and heart issues. Not sure doctors will do that for no pressing medical reason.

Just hydrate with water and depending on blood pressure/kidneys some liquid with salt according to my nephrologist. Most people do not have IV hydration, which is, I was told, equal to two big glasses of water.

You can request that the MD order an infusion for 45-60 minutes.

There is apparently a saline flush which I believe is just injected into the infusion line but I could be wrong.

REPLY
@windyshores

@255anny any discussion of reduced dosages spread out over time is my fault. My doctor wanted to do that because of my kidney and heart issues. Not sure doctors will do that for no pressing medical reason.

Just hydrate with water and depending on blood pressure/kidneys some liquid with salt according to my nephrologist. Most people do not have IV hydration, which is, I was told, equal to two big glasses of water.

You can request that the MD order an infusion for 45-60 minutes.

There is apparently a saline flush which I believe is just injected into the infusion line but I could be wrong.

Jump to this post

I've read so much, it is all meshing together - 🙂
If I decide to do the Reclast, then I know I will hydrate and hydrate with electrolytes as well.
And ask about the longer infusion time.

REPLY
@windyshores

@susanjane77 could you ask about doing a few months of Evenity (the anabolic phase) before going on Prolia? I have no idea but it might be something to ask about.

Jump to this post

About a month ago (how time flies) I had posted that I went to yet another Endocrinologist. We spoke briefly on the phone after the appointment, and I then read her comments on My Chart. On My Chart she mentioned that she recommended that I continue Reclast, but that I didn't want to because it made me dizzy. Ha!! What a joke!!! Dizziness was only one of thirteen side effects I am experiencing on Reclast. While at the appointment I tried to show her a list of all my side effects. She avoided taking the paper that I had so neatly prepared for her, and said we could talk about it again at my next appointment in DECEMBER!!! I was hoping to have some relief from these side effects well before December.
During our conversation I asked her if my bone density had gotten any better after I had the Reclast infusion. I had a bone density test on 1-17-23, Reclast on 2-21-23, and another bone density on 5-20-24. She said "no". It was one of those quick little "no" answers. It indicated to me that she hadn't really looked into it, or she didn't want to spend any more time with me. I have so many more thoughts, but I guess it's just time to find another doctor. All I know for sure is that I will never take Reclast again.

REPLY
@dingus

About a month ago (how time flies) I had posted that I went to yet another Endocrinologist. We spoke briefly on the phone after the appointment, and I then read her comments on My Chart. On My Chart she mentioned that she recommended that I continue Reclast, but that I didn't want to because it made me dizzy. Ha!! What a joke!!! Dizziness was only one of thirteen side effects I am experiencing on Reclast. While at the appointment I tried to show her a list of all my side effects. She avoided taking the paper that I had so neatly prepared for her, and said we could talk about it again at my next appointment in DECEMBER!!! I was hoping to have some relief from these side effects well before December.
During our conversation I asked her if my bone density had gotten any better after I had the Reclast infusion. I had a bone density test on 1-17-23, Reclast on 2-21-23, and another bone density on 5-20-24. She said "no". It was one of those quick little "no" answers. It indicated to me that she hadn't really looked into it, or she didn't want to spend any more time with me. I have so many more thoughts, but I guess it's just time to find another doctor. All I know for sure is that I will never take Reclast again.

Jump to this post

dingus,
I do think you need a different doctor- not hard to find, I know.
This osteoporosis issue is too complicated to. navigate without a doctor who’s fully engaged.
My endocrinologist was so disconnected to my treatment and so poorly educated about osteoporosis that I returned to the cheeky rheumatologist who was willing to learn more.

REPLY
@susanfalcon52

dingus,
I do think you need a different doctor- not hard to find, I know.
This osteoporosis issue is too complicated to. navigate without a doctor who’s fully engaged.
My endocrinologist was so disconnected to my treatment and so poorly educated about osteoporosis that I returned to the cheeky rheumatologist who was willing to learn more.

Jump to this post

My last appointment with the above mentioned endocrinologist was August 19th. I then thought that maybe these side effects were an allergic reaction. So I went to an Immunologist/Allergist. He said no, not an allergic reaction. He couldn't help me, but he gave me the name of a rheumatologist (cheeky, no doubt). He highly recommended this woman. I had already talked to the rheumatologist who had done the Reclast infusion. He had denied that the Reclast had anything to do with the side effects. So I had already decided to try another rheumatologist. I was glad that the Immunologist recommended her. That's the good news. Bad news is I couldn't get an appoitment until December.

REPLY

@dingus pharmacists seem to know more about side effects than doctors, in my experience. I am not sure the doctors even google the online lists! Again in my experience I hear "I have never heard of that" or "Noone else has reported that to me."

If you talk to a pharmacist, that helps because you can then tell the doctor that the pharmacist said such and such rather than the typical "I read that" or "someone on a forum told me that" 🙂

REPLY
@windyshores

@dingus pharmacists seem to know more about side effects than doctors, in my experience. I am not sure the doctors even google the online lists! Again in my experience I hear "I have never heard of that" or "Noone else has reported that to me."

If you talk to a pharmacist, that helps because you can then tell the doctor that the pharmacist said such and such rather than the typical "I read that" or "someone on a forum told me that" 🙂

Jump to this post

Does anyone in the Houston area know a doctor who can help me with these Reclast side effects? I've been to three Endocrinologists, one Immunologist and even asked my Gastroenterologist. All of them replied, "Nope. Not the Reclast!" without examining me. Didn't even offer an appointment to talk about it. Surely there is someone in this fourth largest city in the U.S. who can help me. I'm at my wits end.

REPLY
@dingus

Does anyone in the Houston area know a doctor who can help me with these Reclast side effects? I've been to three Endocrinologists, one Immunologist and even asked my Gastroenterologist. All of them replied, "Nope. Not the Reclast!" without examining me. Didn't even offer an appointment to talk about it. Surely there is someone in this fourth largest city in the U.S. who can help me. I'm at my wits end.

Jump to this post

If the doctor who prescribed the ReClast does not accept that ReClast is the cause of your adverse reactions, you might ask him or her what is the cause. Also please consider reporting to FDA. They might follow up on your behalf. Worth a shot anyway,

"To report problems to the FDA, you can:
Download a reporting form from the MedWatch program website, complete it, and return it to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178.
Call an FDA Consumer Complaint Coordinator if you wish to speak directly to a person about your problem.
Complete an electronic Voluntary MedWatch form online.
Complete a paper Voluntary MedWatch form that can be mailed to FDA.
Call the FDA's toll-free information line, 1-888-INFO-FDA (1-888-463-6332) Press 2 to report into MedWatch or for instructions."

REPLY
Please sign in or register to post a reply.