Reclast IV - Pain - How long does it last

I had a once a year Reclast IV treatment in March 2011 and started having severe bone and joint pain in left leg (from knee down). Pain started slow but has gotten increasingly worse. Its been 10 months since the IV. I have decided I will never get another IV treatment but would like to hear from others who have pain like this, how long did it last after stopping the treatment. Does it get better after a year or does this stay in your system longer? I also have severe muscle atrophy in this leg. The doctors have run every test under the sun and since they can't find anything wrong I'm thinking the atrophy is from lack of use because of the severe pain--every step I take hurts. I use to be a very active 54 year old. I use to exercise 4-5 times a week. Now I can barely walk. Can anyone tell me when I might feel better? How long does this drug stay in you? Thanks for any insight you can give me. The doctors don't know much.

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It is unclear from your post if the pain started immediately after the Reclast, or 10 months later, or what is the reason for your muscle atrophy. If your pian just started 10 months after Reclast, it is unlikely that it is from the drug. But, have they done a recent x-ray of that leg at the site of the pain? Atypical hip fractures would show up on x-ray before the break becomes complete.

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Dxaguru Is wrong! You must have a nuclear bone scan to show a stress fracture. Dr Jennifer Schneider states that you must get the proper x-ray, and that a regular x-ray will not show a stress fracture. She knows, she had pain in her thigh and groin area for month prior to a complete femur fracture. You do not want to have a complete fracture! Insist on this type of scan!

Dxaguru is also wrong when he states that this is unlikely from Reclast. This sounds like classic Reclast to me. This is the song and dance that so many of us Reclast victims get from Drs. and other people involved in this industry ( like dxa) They blame anything and everything except for the culprit... in this case Reclast.

I am so very sorry that you are suffering due to this poison, and I pray that you fine some relief soon. This drug can stay in your system over 10 years ( that was the last info that I heard, but it may never completely leave your body) You are not alone, and I'm sure that you will hear from others on this site that are going through the same issues as you are.

It is criminal what this drug does to people, and I only wish that I could make it mandatory for every board member at Novartis to receive Reclast before another infusion is given to a unknowing, trusting patient. I think it would have never made it to the market, if that were the case.

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It’s unclear, dxa, from your post if you take these all too typical Reclast symptons seriously. No matter the symptons or situation, you are always attempting to divert such negative symptoms away from Reclast. If your reading these threads, and I’m aware you do from your regular defense of Reclast, you are aware that such symptoms are all too common from those who get a Reclast infusion.

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"Dxaguru Is wrong! You must have a nuclear bone scan to show a stress fracture."

Ordinary xrays DO show stress fractures.

" If your pian just started 10 months after Reclast, it is unlikely that it is from the drug. "
"Dxaguru is also wrong when he states that this is unlikely from Reclast."

Perhaps a better reading or understanding of what was written would explain dexaguru's statement.

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There are so many posts on side effects of Reclast, so here is a link.http://www.inspire.com/groups/national-osteoporosis-foundation/discussion/b ad-side-effects-of-reclast/?reply_so

Whatever you do, I would not have another injection of Reclast. Drink plenty of good water, filtered or spring water. We tend not to drink enough when we get older.

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I, too, have wondered how long the pain would last & hoped that it would get better after a year. Your symptoms "joany" are very much the same as mine. Severe, sudden, pain in left thigh/groin area started about a week after infusion - 2 "attacks" - now the pain at night after I go to bed - hurts when I walk - took physical therapy which did not help - just got a lot of cramping which added to the pain at night & more sleepless nights - doctor denial - lots of tests (xray of hip, mri of spine). Just hoping for relief after a year - and what can be done to stop others from getting this poison infused in our bodies? I noticed Reclast is still being advertised on TV!

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TRM,

An ordinary X-ray is very unlikely to show stress fractures of the femur ( I underline very). Most woman ( over 100) had regular x rays prior to a complete femur break. NONE of these x rays showed a stress fracture. I agree that it is possible, but unlikely.
A nuclear bone scan is the proper tool to use to diagnose stress fractures of the femur.

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1) Stress fractures do not appear on x-rays for up to two weeks after the incident. A nuclear medicine scan, and MRI, both would show stress fractures in the acute pre-callous formation phase, this is true. However, if this pain has been lasting 10 months, and it was due to a stress fracture, it would most certainly be visible on x-ray.

2) Bone pain is associated with the acute phase reaction of this drug, appearing within hours of a few days, and muscle pain could be due to hypocalcemia. If the pain started 10 months later, explain why the Reclast waited 10 months to start causing such a symptom?

3) Muscle atrophy syndromes due to neurological conditions, like RSD, can cause pains as described, and would happen whether or not Reclast was given.

As I had stated, without more information that was not clear from the original question, all we can do is conjecture, and that includes ALL of us. Yes, I am hesitant to blame every single health issue that we experience after a infusion of Reclast or any other drug for that matter, to the drug. If a different, serious medical condition unrelated to Reclast is occurring, and we only have our "it has to be the Reclast" blinders on, physicians could delay the correct diagnosis because they are barking up the wrong tree as it were. Also, why only one leg? Reclast goes to all bones not just certain ones does it not? Why not hand or arm pain?

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EZdon. I appreciate your observation that I am cool to trying to blame every little ache and pain that one gets to Reclast, as in the clinical trials, many people experieced identical side effects even though they were on the placebo, and in almost the same percentages. That doesn't mean the placebo patients were lying, and it doesn't mean the Reclast patients were making stuff up either.
But I do DXA scanning at a facility that also has an IV infusion center where several hundred patients a month are getting Reclast. Almost none of them are having any side effects at all. Yes a very rare few, do have the entire gambit of bad things. Now, we do make sure any vitamin D deficiency is corrected, that they are well hydrated, take their calcium, and we insure they have good kidney function before infusing anything. Maybe that is why such side effects are so rarely seen here.
I am not denying that any of the posters here have had legitimate symptoms related to Reclast. All I am pointing out is that this forum is composed of an extremely biased sampling and does not represent the population as a whole.
It would be like asking only Ron Paul supporters at a Ron Paul rally, who they are voting for as the next president of the United States. The poll would predict Ron Paul in a 100% to nothing landslide. While the survey would be true, in that all of them would be voting for Paul, he would lose the general election by almost the same amount.

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Nothing like being in a profession for 20+ years and being told you don't know what you're looking at. Oh well, whatever.

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http://www.pharma.us.novartis.com/product/pi/pdf/reclast.pdf

This is Novartis's prescribing information. See sections 5+ for side effects.

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DXA,

Stress fractures do not always exhibit in a regular x ray. Perhaps that I should have phrased it that way. There have been numerous cases where women have had pain in the thigh or groin area for months, and have had repeated x rays, showing nothing. Only until a nuclear scan was done did the fracture show. Therefore , if you have taken a bisphosphonate drug, and have thigh or groin pain the proper test would be to get a nuclear scan, before the fracture completes. NO one wants a complete femur fracture.

To make statements that Reclast pain begins at a certain time after your treatment is unfounded. Reclast pain , and symptoms are all over the board. My father had muscle pain, and spasms to begin with. The severe bone pain came about a week or more after his infusion. Everyone is different , but Reclast is the reason.

Why does the pain go to one leg? I don't know, but it is how this drug works. Why does one femur snap and not the other?? It does go to every bone, every joint, every muscle, every organ. Why does one woman have more bone spurs on one hand that the other?? I don't know, but it is how this drug works.

You repeatedly say that the instances of Reclast problems are rare... Over 500 deaths, over 600,000 severe adverse reactions...AGain I say this is not rare. One death, one severe reaction is too many in my mind for a drug that DOES NOT WORK !!! How can this drug help bones in one person , and destroy them in another? It can't! You have yet to try and explain this.

I know some one that made a call to the infusion center that my dad went to, not long ago. They asked about the side effects, and if they had problems with Reclast. They gave much the same answer as you. ( this was also the same spill i got when I talked to them) When there has been 1 known death, and at least 20 plus patients that have had severe reactions that were reported at this center. Perhaps they are ignorant, or perhaps they choose to bury their head in the sand too.

Many people don't attribute their symptoms to Reclast, because they get the song and dance that it is something else from their physicians, and they believe them. Few victims of Reclast actually make it to this site , or any internet site. Many are too sick, and many report to their Dr., and no one else. To have such a strong voice on this site against Reclast is very telling, and strengthens the case against Reclast.

Again, many of the victims of Reclast were in great health , with good kidney function prior to this drug, but they are not in good shape now. Tell me that this is all in their minds? My father had a complete blood work up before his infusion, he was well hydrated, his infusion given over 30 minutes. This is NO GUARANTEE that there will not be horrendous side effects.

This stuff is criminal, doesn't work, should be off the market, and the people that had prior knowledge that this was happening , and sugar coat it, and deny that there are real issues with this drug, should be called to task. This will not happen or course, but it should. DXA, you have been on this forum long enough to read the many stories, and see the tragedies that this drug has caused, and the lives it has destroyed. How can you go unaffected??

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"500 deaths and 600,000 adverse reactions." In one of your other threads, you listed 60,000 adverse reactions. Which one is the typo?
What exactly is the source of your numbers? Also what qualifies as an adverse reaction? Is "redness at the injection site" included?

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Dxa, you read more into my post than was written or intended. I did not say or even imply that anyone was “lying” or “making stuff up”.

You say, “this forum is composed of an extremely biased sampling”! Duh; – did you notice in the URL address the words National Osteoporosis Foundation; were you expecting the posters to be writing about having acne?

The postings you respond to are, I suspect, much less biased than are yours who works at a center where Reclast is peddled every day you are doing business and where your livelihood depends. It's not difficult to recognize your priorities.

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I was taking once a week fosomax and I had terrible pain and quit taking it. I have a feeling that reclast will be taken off the market and a class action law suite filed. I thing that stuff is poison. Just my opinion

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The 60,000 adverse reaction was the typo, my apologies. The correct numbers are in excess of 600,000. These were listed as severe adverse reactions, so I would not think that redness at the injection site would be included, as if this was your only problem with Reclast, most people wouldn't even mention, and they should count themselves very lucky. These are the reported cases, and let's face it you have to be very determined to go to the hassle that the FDA puts you through to report. I will try and find criteria for you, and post. I have posted before several times, but I can't recall the specific post name, and these are no longer on the thread.

Also , I would like to once again reiterate that these are the reported cases, I have come to find that even when you call the FDA to report an adverse reaction, many of these reports are never filed. I recently discovered this, and I am trying to ascertain if my claim for my father was actually reported. I never received an acknowledgement, and I am being told that this probably means that my call to report was never filed. It is disturbing to find out that it appears that they are only reporting cases filed by a physician or healthcare personnel. So , people that call to report independently , and don't receive an acknowledgement from the FDA, do not make it to these statistics. This fact alone is not only disheartening, but would push these numbers much higher.

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Not all side effects are reported. About 6-7 years ago my mother started Fosomax & developed severe debilitating jaw pain within a week. Went to a dentist, was given oxycodone (they found nothing). Her doctor didn't connect it either, prescribed valium (my mom is not a pill popper). At the end of the 2nd week my dad saw a tiny blurb in the business section about lawsuits & Fosomax. Because my mother's situation reversed as soon as she stopped, I doubt if it was reported by her Dr. He did however report the severe thigh/ femur pain from 3 years of Actonel. He did not bother MRI/ xray. Pain disappeared over time. Drugs did almost nothing for her spine for which it was prescribed.

Heck of a thing for a 75 yr old healthy active woman to end up in a wheelchair from a busted femur vs. vertebral fractures which these drugs were supposed to prevent. Six of one, half-dozen of the other -- either way you are crippled. Fortunately my mother's Dr. is up on this stuff.

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First of all, thank you to everyone who responded to my post. I guess I wasn't clear on the series of events and what I've done to try to figure this out. I started having pain within a few weeks of having the Reclast IV. It is affecting my knee area which I have a history of having problems with but this time I did not injure myself from a fall or sports injury. It just started out of the blue after I got the Reclast. I initially attributed the pain to getting older and having bad knees. The pain started out more of a nuiance because I couldn't do some of the things I enjoyed doing but it just kept getting worse and worse. The pain is not just in my knee, it goes down my leg and sometimes into my foot. The pain in my knee feels like joint pain and the pain in the lower half of my leg feels deep like bone pain. I've been to multiple doctors. I had an xray, mri, full neurology test, and 10 accupuncture treatments. I've seen 4 doctors and no one can find anything wrong. I suspect the muscle atrophy is from lack of use because I am in so much pain I can't even walk up/down a flight of steps like an adult. My orthopedic doc thought I had a bone tumor or cyst in my joint but the mri and xray showed nothing. He also referred me to a neurologist but that showed nothing unusual. He is stumped so suggested I see someone else. I see a new orthopedic doc tomorrow. I'm wondering if they can just shoot me up with some steroid injection. Does anyone have any experience with using steroids after taking Reclast? I don't want to do anything thats going to make myself worse but I gotta do something. I plan to ask the doctor that tomorrow but every doc I've been too acts like they know nothing about this drug. They listen to me and think its an interesting theory but no one will say either because they don't know or they can't. I live in Wash DC area so have been seeing doctors associated with GW Hospital. Tomorrow I'm seeing a doctor in Baltimore. Since no one can find the problem, the only thing I can conclude is that Reclast did this to me or at a minimum made my knee problem worse. I've read other peoples reviews and it sounds like it finds a weak bone/joint, etc and launches a full blown attack. I appreciate the feedback and will read each one. I wanted to respond to clear things up with respect to the timing of my pain and the IV and the numerous efforts I've made to find help. I agree that they need to take this drug off the market. It is destroying too many peoples lives. I am only 54 years old and too young for this to be happening. I use to be a fitness junkie and now I can't walk more than a half a block without having to sit.

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Hi Joanv,

Steroids weaken your immune system, and Reclast has done a number on your immune system already. I would be suspicious of taking steroids, but they may help your pain ( short term) Wish I knew something to tell you. Reclast can cause arthritis, and terrible joint pain , as well as, bone spurs that are incredibly painful.
This is one of the many problems with this drug, it seems as though no one knows what to do, and Dr's. don't know what to make of this , so they just dismiss it. I sure wish that Dr's. would listen, and understand that we know our body better than they do. They basically want us to shut up, and fill the next prescription that they write.

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The steroid I was going to inquire about is a one time injection directly in the joint. I had one several years ago after I injured my knee from a sports injury. You are correct in that its short term. Some people get relief for a few months some people longer. I did some research and you can get injected about every 3-4 months. My only concern is that I don't know what Reclast has done and what it will do if I get a steriod injection. Will it help or make the matter worse. When I talked to my doctor about trying accupuncture he said it couldn't hurt but I'm not sure he was right about that. I went to a very good medical doctor associated with George Wash Hospital for the accupuncture and he felt it was very strange that I was actually in pain during some of the treatments. Accupuncture should be painfree or at least minimal pain. I think my muscles were having spasms. As soon as the accupuncture needles were removed the spasms went away and I felt pretty good for about 1-2 hours and then the pain returned. I've been taking over the counter meds and hydrocodone and neither work. About the only thing that kills the pain is a few stiff drinks and we all know self medicating is not the solution.

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