Reclast

I have been on Nexium for 15 years and was on Prilosec before that for acid reflux. These drugs block calcium absorption, therefore I have osteoporosis and began seriously losing bone density in my early 40's.

I tried Fosamax but my acid reflux worsened and my doctor suggested Reclast.

After much skepticism and concern over potential side effects, my latest bone
density test showed my bone density
dangerously low, so I gave in and had my
first Reclast infusion yesterday.

It is very important to stay hydrated to
avoid headache and lessen other side
effects. I drank a LOT of water prior, during
and after the infusion. One full glass of
water per hour helped keep the headache
minor.

About 8 hours after the infusion I began
feeling like I was coming down with the flu.
Fever, mild chills, and some body aches
which were of no real concern and not all
that bad at first. I was very tired and had a
general feeling of malaise.

The worst side effect for me was a
tightening in my chest and back which
made it very painful to breathe. My
sternum, ribs and spine became progressively and excruciatingly sore and coughing, sneezing and every breath I took
hurt so much it brought tears to my eyes. I
was terrified that the tightness in my chest
would worsen so I called my doctor and
was told to take 800 mg of Motrin which did
absolutely nothing for the pain.

I suffered through the night and got no
sleep. Every breath and movement was
terribly painful.

I called the doctor this morning and
described how terrible the pain was and
the doctor called in a prescription for
Vicodin which really helped a lot. Tonight I
am not pain free but at least I can breathe
without struggling.

They did warn me of flu like side effects but they did not prepare me for this degree
of pain. I am otherwise healthy and fit. I
work out in the gym 6 days a week, am not
overweight and am stronger, younger, and
healthier than the typical patient who receives this drug. If it is affecting me this
way, I hate to think what it might do to someone who is not fortunate enough to
have otherwise good health as I do.

As the Reclast attaches to your bones, you
will feel pain. My arms and legs (which I
expected to hurt) really aren't that sore but
my torso, neck and head hurt a lot. It was a
crushing pain in my chest and back last night, much like they describe in a heart
attack, so it's a bit unnerving. Don't take
anything for granted. Be sure if you do
have this kind of pain that it is from the
Reclast and not a real heart attack!

I'm glad I had the infusion because they
said I have a very good chance of
reversing my bone loss since I'm still
young enough to do that but I'm trying to
warn anyone having the treatment for the
first time to plan adequate time off to rest
and deal with the side effects. It feels like
the flu but the pain in the spine and ribs is
a thousand times worse than flu aches.

If you are having a Reclast infusion, ask your doctor up front for some pain
medication stronger than Tylenol or
Motrin. Those pain relievers are a joke for
this type of heavy duty pain. I suffered for
24 hours before I got my prescription for
Vicodin. Had they just given it to me
yesterday, I wouldn't have had to suffer at
all.

I'm hoping these aches begin to subside
on their own by tomorrow. If I have any
other issues, I will post them here.

I hope this posting is helpful to anyone scheduled for their first Reclast infusion or
struggling to decide whether to have it or
not.

Just remember, hydrate, take adequate
time off to rest and get through the aches,
and get a script for something that will
knock the pain out in case you need it.

Good luck and God Bless!









If you are having Reclast

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45 replies. Join the discussion

Monahlisa:

Hang on to your hat and hope that your reaction is just going to be mild! Look around on the site and explore what all the reactions to Reclast are so that you know what can happen in case you experience any of the side effects that many of us have had. I hope, for your sake, that you don't, but be prepared just in case. Look at Bone spurs are real with Reclast for one site, and Reactions to Reclast for another, and Reclact can be fatal for another. (spelled wrong on entry.) I don't do this to scare you; however, I want you to be informed just in case you do experience any reactions and need to seek medical attention.

Best of luck to you and hope that you end up okay.

Sincerely,

CubbieFan2308

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Thanks for the heads up, Cubbie. I am happy to say that I woke up this morning feeling great, as if I'd never had the Reclast infusion. I took the pain medication my doctor prescribed last night and fully expected to feel lousy once it wore off but was pleasantly surprised to wake up with no body aches or pains. A very slight headache lingered but that might have been due to the pain medication, which I'm not used to.

I have seen all of the scary posts and I struggled with this decision for a long time before agreeing to have the Reclast treatment. The only reason I went with it was because I felt I had no option, due to the rapid loss of bone density I'm experiencing. What I really need to do is get off of the Nexium so that I can strengthen my bones with calcium which the Nexium blocks. I do all of the right things, I eat well, do weight bearing exercise, etc. but the fact that I'm very petite and on Nexium is working against me.

Hopefully I will not have any problems with this Reclast in my body, and as of this moment I feel great. I would neither recommend nor discourage it, since it's too soon to tell, but I will say that the side effects wouldn't have seemed so bad had I known they'd be totally gone by this morning. I was achy from Thursday night until Saturday morning. Not so bad.

Thanks again for your concern and I wish the best to anyone facing bone density issues.

Mona

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Hi,
I thought I would share my experience. I had my infusion Wednesday. I really can say I had little or no reaction. Perhaps a bit of nausea, but I had my wallet stolen a few hours after so that I might have been reacting to that!
I think each person has to make their own informed decision. However, it is important to remember that all drugs can have an adverse reaction.

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Thanks for sharing your experience. I had no nausea, but the anxiety over worrying about possible side effects made me queasy during and right after the treatment. Once I settled down and quit worrying, the queasiness subsided.

I am so sorry about your wallet. That's awful! I was mugged at gunpoint so I know how it feels to have your personal property and space violated. I hope you recover your belongings and you continue to be unaffected by the Reclast!

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I was happy as a lark for 3 months but then a bone spur appeared on my collarbone and the insuing pain is excruciating (see my original post). My joints pop with little moment. I hope you will not have any of these bad side effects.

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Imteaching ... Just curious as to whether they confirmed the bone spur as a side effect of the Reclast. If so, did you report it to the pharmaceutical company? I think its important that every side effect is reported and documented so that we can effectively gauge the most common sude effects of this and other drugs.

Thank you very mimuch for your post. I will watch for bone spurs as well!

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And sorry for the type-o errors. Darn auto-correct thinks it knows more than I do! :-)

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Monahlisa,

I will be having my 3rd Reclast infusion on Thursday. The first two had no side effects. Hoping and praying this one won't, also.

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Glad to hear that and good luck to you. They told me I shouldn't have side effects with future infusions. Is the Reast helping your bone density?

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I had a reclast infusion Sept 21 2010. I've been sick going on 2 weeks. I had flu symptoms a headache and chest pain about 16 hrs later. Next day I woke up with a runny nose sore throat and a broncial cough. I kept getting sicker until I couldn't work. I left work early on the 24 th. I had Pains in my legs the second day. I woke up on the 26th in terrible pain. My right hand had swollen. For 2 days I suffered with that and on this day I woke up with hoarness and hardly had a voice. I called the Doctor who didn't know what to do. She had to call her rep who said there was nothing that could be done but treat the symptoms. 2 days l later I woke up with 2 swollen knees. I Still have a broncial cough and congestion. I made an appointment with my doctor who was surprised to see how bad I looked. I found out she didn't know whole alot about this medication. She said her insurance turned her down for the infusion and maybe it was a good thing. She had me talk to a women that worked in her office that was concidering do this. The Doctor also told me when she talked to the rep he said reclast should not be given to someone who hasn't been treated with one of the other osteo meds such as boniva or others. It is now Oct. 2, 2010 and I'n still weak. I have to go back to work on Monday. My aunt was concidering this. I hope that she has decided it is a mistake. I would never recommend this to anyone

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An update to my last post and also in response to the above post from riverdove . . .

Once I got through the initial flu like symptoms and bone pain, I thought I was fine even though I felt a little tired. Within a few days, I developed a sore throat, which I attributed to allergies. The sore throat lingered, the fatigue worsened and 2 weeks later, (last weekend) I was hit with a terrible respiratory/sinus/ear/throat infection. I am not one to get sick, and can count the number of colds I've had in the past 20 years on one hand. So this kind of illness for me, was unusual.

With that in mind and knowing I'd had the Reclast, my PCP ran blood work and found yesterday my white count (Specifically my Absolute Neurtophil count) is dangerously low and my immune system is extremely compromised. I was referred to a hematologist and now I am certain that Reclast has damaged my immune system. If you look on the Reclast website it says 12% of patients will develop a low white count, but the doctors don't make a big deal of that up front. Had I known this, I would not have had the infusion.

Riverdove . . . I suggest you get some blood work done to see if your white count is low since you and I had almost the same reaction. If it is low, I suggest you and anyone else with this reaction report it to the pharmaceutical company. I called them yesterday and reported this and they are investigating and will get back to me but the more people who report adverse reactions, the better it will be for all of us.

To report an adverse reaction, here's the number to call:

1-888-NOW-NOVA (1-888-669-6682)
Monday - Friday, 8:30am - 5:00pm EST

The website is: http://www.reclast.com/index.jsp

Thank you, Riverdove for posting your experience. I'm sure many others have had this reaction but are writing it off to an unfortunate bout with the flu. That's what I did at first but today is exactly one month since my infusion and I am still sick.

Best to all!

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Thanks monahlisa for your reply. I still have alot of congestion and a cough. I feel overall weak . I have to go back to work tomorrow and it scares me alittle. I don't feel strong enough but I don't want to lose my job. I think I will call my family doctor tomorrow. I felt like reclast attacked the weak places in my body.
Once a year I get broncitis but this was a little different. First place I had a reaction was my chest. I have alittle arthritis in my hand and that became real painful and swollen. I've fallen and hurt my knees. Both knees swelled and hurt. Last night I had pain in one knee and my hand again. When is this going to end. My Aunt was just hospitized for artirtis in the brain. The veins in her brain are in flamed and can cause her to go blind. She has to stay on prednisone. I just happened to e-mail my cousin and tell her what happened to me. She e-mailed me back and said the doctor wanted to give my aunt reclast for osteo. I told her I would never recommend it to her. I'll let you know what my doctor says

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Thanks Monahlisa for sharing your experience on Reclast. My doctor is trying to get me to take it. I had a very bad experience with Boniva 2 years ago and am going to try Fosamax next. I'm so sorry to hear of your painful side effects. Please keep us posted on your progress. If the side effects diminish, I shall reconsider taking it. Hope they end soon.

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I don't want to make you paranoid but I tried Fosamax first, before Reclast. For 18 months I suffered from terrible bone pain, fatigue and G.I. issues. Last December I wound up in the ER for what seemed like a gall bladder attack. My gall bladder was fine. It was the Fosax making me sick. As soon as I stopped the Fosamax, my fatigue, one pain and stomach issues stopped but my bone density got worse so my doctor recommended Reclast and assures me it was safe and said he's never bad a patient suffer any severe side effects.

Just be careful and keep that in mind before trying Fosamax and I wish you the best Sarasand!

Riverdove - I know exactly how you feel. I went to the gym today and could barely move. This is not normal for me. I'm usually very athletic, very active and I love my workouts but this past month has felt like I'm trying to dredge through chest high mud and I need naps every day.

I pray your white count is low and your immune system has not been compromised like mine has. Please post and let us know when you find out. Hooefully we can all get out from under this drug induced curse. Take care!

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Here are all the side effects I have experienced since my infusion on May 27th:

I now have 30-40 bone spurs, 4 of which are in my lungs, which make breathing difficult.

I have gastroparesis, which is causing me to lose weight. I am now down to a dangerously low 94 lbs.

My left eye swells below it and my eyes will arbitrarily not focus together, causing everything to come to a V, almost like I am in a video arcade driving game and the cars are coming right at me, only this is for real!

Two hiatal hernias, one of which popped through the stomach wall when I was laughing through the diaphram.

One of the biggest reactions that I have had to the Reclast is atrial fibrilation. These episodes are like having a heart attack and in some days I may have 3-5 attacks a day. They literally wear me out. The meds they have me on for it are not working. I now have to see a heart doctor for that.

Today the doctor discovered a bone spur on my esophagus, which is extremely painful. Besides being there and in my lungs, they are al over my feet, my hips my back, my tailbone, my hands, etc. They form on the nerve endings and are extremely painful. I did not have one bone spur before taking the Reclast, so yes, this is definitely from the Reclast. My doctor has filed a report with the FDA and has spoken with the Reclast representative on my case.

So, anyone considering Reclast needs to consider all of these reactions because they can happen to you. Go to the FDA's Web site and look at their brochure on Reclast. Follow these directions to it:

hppt://www.fda.gov

Choose the blank at the left that says "Drugs".

On the next page at the top right, there is a search blank. Fill it in with "reclast and osteoporosis".

On the next page, select the top category. This will take you to the Reclast brochure. Please read through it thoroughly. It lists a lot of the side effects of Reclast, including if you have had any type of your intestines removed, you should discuss this infusion with your doctor. I had part of my stomach removed and probably shouldn't have had this drug in the first place, but my physician had never seen this brochure. If you are considering taking Reclast, make sure your doctor is aware of this brochure and that you are aware of it.

I only write the above with the hope that this message may spare someone from going through the pain that I go through on a daily basis. I don't want anyone to have to go through this. If telling my story can prevent just one person from changing their mind about Reclast, then I haven't gone through all this for nothing. Please think about it. I can't make the decision for you. It is your decision ultimately. But there are other alternatives out there. Seek out Dr. Lani and ask her opinion. She is very knowledgeable and has gone through osteoporosis herself. She does have answers.

Sincerely,

CubbieFan2308

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Cubbie, I know you took Reclast and had terrible side effects. For that I am sorry.

But it seems you are on a tract to discredit this drug and other biophosphates.

I think each person should do his or her own research and with their endocrinologist make the decision for them what is best. You were very ill, it seems, from the post I have read, before you took Reclast. That in itself could cause a lot of the side effects from the medication.

To damn all Reclast as no appropiate for anyone,
vs the risk of not taking medication is just wrong.

The risk of a hip fracture in an untreated patient my age which is 68, is one in two in the next ten years.

The cost of nursing homes, pain, rehab, hospitalization, and the side effect of hip fracture can be death.

Since it is mostly woman who have osteoporosis, I am begging you all who read here, do scientific research by reading all the double blind studies, find a doctor if you are near enough, connected to university who is well informed of the risk of what ever medicine you take vs the risk of Hip Fracture, vertibral fracture and all that entails and the risk of death by not taking medication to treat you osteoporosis.

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Good point but we must all weigh the risks. Hip fracture vs. compromised immune system? It's almost as if we have to choose which we prefer to die from and that's not a solution. My bone density is ridiculously low 30 years before it should be, due to the Nexium I take, which blocks calcium absorption. No one warned me of this when I began taking it, and now I can't get off of it without living with debilitating acid reflux which will inevitably erode my esophagus and can lead to esophageal cancer.

I'm going to see a surgeon about having my esophagus "wrapped" so that I can live without Nexium which is the true culprit. Had someone posted warnings about Nexium and other proton pump inhibitors long ago, I may not be in this situation so I think it's good that everyone shares their negative effects. That way we can all make educated decisions on our own behalf.

I get what you're saying Cedar, and I understand, but I also understand that many are suffering as a result of Reclast and are just trying to prevent others from doing so. The problem is, there is no way of telling how you will react to the treatment until after you've had it, at which point it is in your body and can't be undone.

Thanks to all for the postings!

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CedarTree:

I am not damning Reclast. I am just asking everyone to look at all the information before taking the risk of infusing with it. Yes, I have had serious side effects from the Reclast, but no, I was not ill before the Reclast. All of these side effects have come on since that infusion. I have been honest about that from the start. All I have wanted to do is let people know what has happened to me so that they can hopefully make an educated decision about their choice. As I stated in my previous post, I cannot make their decision for them. They have to do the research and decide for themselves. That is why I posted the FDA's Web site. There are plenty of other choices than Reclast out there.

What I don't understand is why someone would want to risk taking Reclast when there are other alternatives that do not have the side effects that Reclast has? Why not seek those alternatives out instead? I'm not the lonesome dove here. Look at other postings to see that others have gone through the same things that I am going through.

But again, as I said before, this is all of your decisions. Feel free to decide as you wish. I am just offering you up my experiences. Do with it as you wish.

Sincerely,

CubbieFan2308

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Hi all. Sorry about all that you are going through. Cubbie...you sure have me convinced. Noone should have to suffer as you do day after day! The more I read the worse this Reclast sounds. My stomach does not tolerate drugs well at all. I have a list of meds a mile long that I have tried for arthritis, terrible heartburn for over a year and I am also a 55 year surviving diabetic..so my immune system is already compromised...now the osteoporosis has set in. I need to do much more research. The rheumatologist that wants me to have Reclast said he would go to bat with my insurance to pay for it...BUT I will tell him no thank you! Thanks so much to all of you for information and Cubbie I will get back to you soon dear. You all take care of yourselves...so glad I found this site to come to.

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BTW I took 1 50mg Lyrica capsule and was so dizzy, tingling all over...especially in legs, rapid heartbeat and felt so spaced out all next day-I said no thanks to that. If I am to take a medication I need to be able to function to take care of my diabetes and I was good for nothing all day. Like I say meds and I do not mix.

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