Reclast Infusion

Hello- Somehow I inadvertently started my discussion under the wrong topic ( diagnosing). In case anyone is considering a Reclast infusion, I wanted to let you know that I did receive my infusion yesterday. Besides it taking up most of my day, it was not a bad experience and today my side effects are minimal. The only discomfort were the needle sticks. Prior to the infusion they drew blood to check my kidney function and calcium level. If either had been abnormal, they would not have continued with the infusion. Then they started an IV and ran the Reclast. I could not feel the Reclast going in. They ran it in over 30 minutes. The most common side effect is flu like symptoms, but so far I am only having minor joint pain which I am sure if I took an ibuprofen, I wouldn't even feel that. The emotional part of this is that my doctor referred me to an oncologist for the infusion. This was done because oncologist have been infusing a similar drug for cancer patients for years, so they have a better chance at getting it covered by insurance. As I received the infusion, I was surrounded by cancer patients receiving their chemotherapy. This was very emotional. I could not help but feel guilty, sad and thankful all at the same time.
Anyway, if anyone has questions about the infusion, I am happy to answer them. I will keep you updated as to whether my insurance company ( they approved the infusion but were vague as to what dose they would cover) covers this or not.

Joanelai

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23 replies. Join the discussion

Hi Joanelai, as long as the subject notes Reclast, the community members will be able to access your information by using the Search under the NOF banner. Type Reclast in the Search. All the Reclast posts come up. Thanks for the information. Sandi

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Thank you for sharing, Joanelai,
I am currently on Actonel for over 5 years. I have severe gastritis. MD says the Actonel causes it but a broken hip was worse then gastritis! So I'm in the position of taking medication to take care of side effects of other medication! I am anxious to hear how you do with it. And also would you please share any addresses of quality articles or research that you read, or that convinced you to go ahead and take it. Did you consider any other medication instead?

Thank you again for your sharing.
imfishing - sue

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Over the past four years I tried Actonel then Boniva then repeated the bone density which was worse. And I had also added calcium and vit. D. After the worsening bone density, my doctor recommended self administered injections of Forteo, but after researching that I opted against that tx. Forteo is black boxed because they are continuing to study to see if it increases one's chance of developing bone cancer. So, my doctor started me on Fosamax with the plan of repeating my scan in a year and if worse, she would push me to use Forteo. I had heard that Reclast had been used for years to treat a bone disease called Paget's disease and that the FDA was considering approving it for osteoporosis. I kept up with it until it was approved this past Sept. If you research it on google, don't be scared off by articles about it causing heart arrhythmias- check the dates on those articles. At first they thought it might, but before the FDA would approve it, more researched discounted this concern. You can read the package insert at www.reclast.com. Also look at www.medicinenet.com. At the FDA site, if you search for Reclast, you will see an article titled "Early Communication of an ongoing safety review" which talks about the heart arrhythmia.

Its been a week and the only side effect I have is occasional brief bone pain. Its odd to have one's toes start to hurt then stop then one's shoulder blade hurts then stops, but its really not bad at all.

Take Care,
Joanelai

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Joanelai,

Thanks for posting this information. I am new to this forum. I am having my Reclast infusion next Wednesday, 1/23/2008. I am glad to have someone give a detailed description of what to expect. I have been very nervous about this...especially after reading some of the websites and seeing some of the side effects. Glad to hear yours have been minimal! My infusion will be at my Rheumotologist's office. My insurance (Atena) has indicated that they will cover the cost of this med.

I was on Actonel for 2 years and bone density was worse the second time...my family doctor sent me to the specialist at that point. I have a family history of osteoporosis.

I will keep let you know how it goes!

Kathi

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I'm so glad to come across your post. I am receiving the Reclast infusion tomorrow and am hoping that all goes well and this is the answer for me. I have several compression fractures in my back from my T9 all the way down to my lower lumber vertabrae. The doctors have not been able to figure out why they keep fracturing when I'm not doing anything but physical therapy. My bone density was not overly bad, so they are stumped. I'm only 48 and there is no history of this in my family.
My doc is also putting me on a strong prescription of Vitamin D. I'm hoping and praying so hard that these work, because I can't live with this kind of pain the rest of my life. My husband who is in his eary 40's, is way too young to be taking care of such an invalid. But he has been my godsend.
So everyone wish me luck that this infusion works for me.

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Thank you for your thoughtful comments and the information you have shared. I am considering Reclast after my endocrinologist mentioned it as an alternative to oral bisphosphonates. I was concerned about the atrial fib reports, but realize after reading your post it isn't a current concern. That was a big help. The side effects sound pretty mild and tolerable. Osteoporosis is a much more complicated problem than one first realizes. I am looking at life time medications (hormone replacement, calcium, Vit D, bone density drugs) and they all have risks (cardiac, cancer, bone deformations, etc) associated with them. Not what I expected at age 52 and previously excellent health.

It is discouraging to read that after taking oral bisphosphonates, many people do not have improvement in their bone density. Is there any way of predicting how you will respond to these drugs before one year? That is a long time of dealing with side effects and the expense to find out it didn't help you after all.

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Count me in. I am scheduled for my first Reclast infusion on February 4. I have refused the oral meds because they are associated with esophageal bleeding and ulceration. I understand the risks of Reclast. The possibility of a heart arrhythmia is worrying but a) a majority of patients don't get it and b) we could get an arrhythmia without taking Reclast. My husband has had a heart arrhythmia for nearly 20 years so I know that life can go on quite pleasantly with medications, pacemaker, defibrillator, surgical interventions, whatever it takes. On the other hand, with a broken hip or vertebra my independent function would be very compromised. I guess it's a gamble, maybe an educated gamble. I've also just started on 50,000 units of Vitamin D (was astonished to learn I have a deficiency. Who knew?). So, those of us who are taking this newly-approved drug are a sisterhood of pioneers. Best of luck to us all, and let's stay in touch.

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Just wanted to let everyone know that I had my Reclast infusion on Wednesday the 23rd. Everything went smoothly and it took very little time. It is now 3 days after infusion and the only noticeable side effect is a little aching in my hands and wrists. It is not severe - just noticeable. I have been taking ibuprofen and that seems to help. So far so good! I will keep you posted!

Kathi

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I received my Reclast infusion on Thursday afternoon. Felt pretty good going in and later that evening. But after going to bed, I started developing side effects. I had chills and a fever of 102, a very bad headache, and every muscle that hurt before(from all my compression fractures in back) were amplified by 10. Still running a litlle bit of temp this morn, but way better then yesterday. I have a great appetite though.
I know these side effects could last 3-4 days, but they are subsiding pretty quick. I'm sure lots of sleep and liquids will really help. I'm sure I was worse than most people, just because of whats going on in my back.

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Reclast Report: I had my Reclast infusion this morning, now 13.5 hours ago. I was very apprehensive and yesterday (the day before the infusion) experienced all the side effects out of sheer anxiety. The reality was anticlimactic. The infusion took 30 minutes; I felt nothing. After about 4 hours I was aware of an almost imperceptible achiness but did not anywhere near need to take anything for it. I had a nap and it went away. So unless there's some weird delayed effect, that's it. Have not had any bone pain, even in my bunions (which I expected). One suggestion: they tell you to hydrate well before the test---I think they don't want the stuff to sit on your kidneys. So in addition to getting up early and drinking a few mugs of tea, I took a bottle of water with me and drank it in the waiting room just before I went in for the infusion, then I came home and drank all day (that's not what it sounds like!).

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Update on Reclast Infusion: I should have waited to post. For 30 hours after my infusion I had no reaction but being a little achey and thought I was going to be lucky. However, in the afternoon of Day 2 I started having what I think is bone pain and it is the worst pain I have felt since the last time I was in labor, 50 years ago. It has been in my pelvis and legs all the way from my hips to my ankles; it moves around, comes and goes, does surges and crescendos. Tylenol doesn't touch it. Going to bed is worse than walking around. This has now been going on for ten hours. and it looks like a rough night ahead. SOS if anybody has had this and can recommend anything.

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Tricia---I see that we have something in common that we might warn our fellow board members about, re Reclast: the after-effects can come as a delayed reaction, so prepare your domestic scene accordingly. I thought I was allee-allee-in-free when I woke up the next morning still feeling normal---then things started to happen 1 1/2 days after the infusion---and I see the onset of your symptoms was also delayed. I had arranged my household so that I could rest the day of the infusion, but I felt OK that first day and now find I am knocked out for the rest of the week. For anybody who gets bone pain, I find that cold compresses (wash clothes wrung out in very cold water) help more than Tylenol. Having the symptoms hit belatedly feels as if I went to a scary haunted house expecting something to grab me and nothing did, then just as I was heading out the door, feeling like I beat the ghosts, something smacked me upside the head.

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To all of you who have posted about your experience with Reclast,
Have any of you informed your doctor or called the doctor's office to report on your significant side effects that occurred after you left the office? If you haven't, I would encourage you to do so. I have been following the posts on Reclast because my doctor is trying to convince me to take it. When I asked him what his patients experience with it was, he informed me that they all tolerated it very well with minimal side effects. I'm wondering just how aware he is of what develops once his patients are home. So please let your doctors know that it hasn't been a walk in the park for you!
I hope all of you feel better soon and keep us posted on how you're doing.

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I got my first Reclast infusion on 2/5/2008- no problems with the infusion but unfortunately no one told me to drink water or what side effects I might expect. No problems all day of infusion- woke up about 11:30 with severe chills- and spent the night under several blankets- and even encouraged my dog to get into bed to help keep warm- when I finally got out of bed at 8am my temp was 101....I spent the day sleeping, burning up, freezing and generally feeling like I had the worst flu- when I could finally get to the computer I found on the Reclast site the 5 most common side effects- I had 3 of them- bone pain is hard for me to determine because I also have severe arthritis..(fever & chills, headache and fatigue)
I notified my rheumatologist- just as someone else suggested- maybe he needs to report this or maybe advise other patientsd- he said he has not had anyone else report this- I feel like I have avery bad flu so I wonder if others just thought they got the flu (and maybe don't have internet access)
I am hoping- as it says on the Reclast site- that this subsides in 3-4 days because it is not fun.....of course I have been assured that next year the side effects will be less...

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The side effects did subside in about 3 days. I would have thought I had a bad case of the flu if I hadn't known these could happen to me after the infusion. Its been 2 weeks since I rec'd the infusion and have noticed a difference already. I was able to drive Monday and Wednesday to my physical therapy and I actually walked across the room without my walker or my back brace on. I've been able to get up and do a few things that I wasn't able to do 2 weeks ago. Some laundry, cooked myself lunch yesterday, and some sewing . The nurses yesterday took one look at me and said I didn't have that pained look on my face that I had a couple weeks ago. My physical therapist wants to up my excercises to 2 times everyday to get that movement going and to help heal these fractures faster. Its helping knowing that I can actually do it now when I had a tough time getting out of bed just a few days ago.
I just hope that I keep improving day by day and that this Reclast does really work. I hope everyone keeps writing about their experiences with this infusion.

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No, lorac, I didn't report my side effects because they were well within the parameters listed on all the Reclast sites (coming on within 3 days, remitting within 4 days of onset, bone pain etc). Having been through this and having read every "Reclast user" post on two boards, I would suggest to any involved medical professionals that a) they prepare patients by clarifying that onset of side effects may not be immediate so life arrangements need to be made accordingly; and, b) while people are reporting variations, some of us are having a lot more discomfort than we expected. And to my peers in this, for what it's worth, I found that Tylenol didn't help but Advil did (which sounds like some kind of inflammatory process is involved).

My reaction of bone pain didn't start until 30 hours after the infusion. It lasted 30 hours then went away like magic. I can imagine a patient with a job arranging to take it easy the day of the infusion then expecting to feel fine the rest of the week: don't count on that. My infusion was 8:30 Monday morning and my worst time was from 2 PM Tuesday until 8 PM Wednesday; Thursday I am back to normal. I would still choose Reclast in a heartbeat over the oral drugs with their nasty GI problems. Hurting for a day isn't the worst thing that could happen.

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Just a quick update on side effects since my December 14th Reclast infusion. The next day or two I was tired but not bad. I only had some bone pain off and on for about 2 weeks. It would "float" from bone to bone and was very brief. I occasionally took an ibuprofen. But after a couple of weeks, no pain and no change in energy level. Two months out still no side effects. Appears one's reaction to the infusion varies person to person. I hope everyone's side effects are short lived and that the next bone density test shows improvement.
Joanelai

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Thanks to all of you who have had the Reclast infusion and have described it here in detail. I have been trying to decide whether to give up the Boniva infusions for Reclast. Your comments help the fears subside.

Are there any osteonecrosis (deadening of the jaw) side effect warnings with Reclast as there are with Boniva?

Thanks....Linda

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Thank you Jonelai and all you other dear ladies (and men) for sharing your experience with reclast infusion.

I am currently taking 2 to 4 weeks of 2 X weekly mega doses of prescription strength Vit D in preparation for my reclast infusion. I can't help but feel we are a bit like "guinea pigs" or better yet, "pioneers" in this fairly new traveled territory in management of osteoporosis, God help us all!

I consider myself one of the "lucky" ones, because even though I am fairly young, my DEXA was -2.9 and -3; hips and spine, but, I have no fractures!

They did discover osteoarthritis in my hips and spine as well and expect that is the cause of my physical pain ( I have to walk with a cane to support my hips). But as my doctor put it, "a hip replacement can't be done without bone, so the infusion of reclast comes first" Hip replacement? Slow down doc, I can't begin to wrap my mind around all of this.

Up until last summer, I was still walking 5 miles a day and thought I was in good health - now I don't know what to expect next. I know logically, that is the truth for every human on earth, none of us know what tomorrow brings and yet I am having more difficulty accepting this truth than I ever thought I would before it became so real to me.

I will continue to write, though it may be more off than on. Know that I am always reading your entries.

Best to all of you,
sdonesley

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I too wanted to give everyone an update. My Reclast infusion was on Jan 23rd. I had some aches and pains...mainly in my hands and arms...I took ibuprofen for a fews days and have had no problems since then. Knock on wood!!! I agree with you all that we are "pioneers". I only hope that we all see some significant changes in our bone density. I do NOT want to end up like my grandmother who was so fragile that she once broke her fingers pulling weeds!!!

We must keep positive thoughts and let's hope we all can come back in the year to come and say "IT WORKED!!".

Kathi

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