reclast infusion

hi, i would like to speak to people who have had reclast infusions. are you feeig any bone /joiint pain/discomfort 2 months after the infusion or longer?

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Eileen:

I did hear that some of these drugs could cause ONJ and I know that is a very problematic issue.

Not good that he still has some fluctuating bone pain 2 years later. How often does this pain occur and how severe?

Hopefully, both my sister and your husband will overcome the side effects of these drugs.

Glad to hear your husband is cancer free now.

Take care.

Thanks so much for your response.

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To morning 132 re "physician totally agrees Reclast is responsible for the pain"---I can't imagine how he could come to that conclusion without eliminating every other possible source of pain, a process which would require dozens of tests. Online you will find a table of all side effects found in a study involving Reclast; it enrolled around 7000 patients, not a single one of whom reported what your sister has experienced. If she has had an idiosyncratic reaction, her doctor certainly should report this to the manufacturer in the interest of maintaining good data. Otherwise, he is just chatting with her---sound data are not established by "eyeballing" an event and guessing its cause. Another example: my sister-in-law knows somebody who took Reclast and the following month fell and broke her leg; she blames the break on Reclast. "Association does not equal causality."

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Since the pain started very shortly after the Reclast infusion and the physician has been my sister's physician for 20 years, I am sure he would be aware of any other physical issues that would cause the pain. She recently had a full physical and all the "tests" were run. Further, I did not read anywhere that the tested patients had no issues with Reclast. From what I read, the claim is that Reclast works per their testing of patients. If you read Reclast side effects, severe pain is listed. How is it that they know about the pain if none of those patients tested had pain? My sister's physician is not just chatting. As I stated, she has had all the "tests" recently done and her physician is well aware of any other issues she might have prior to this infusion. What would you think if you were perfectly healthy, just had a complete physical and suddenly after getting this infusion, your condition immediately deteriorated??
The problem has been reported to the manufacturer. And, my post was not meant to blame the manufacturer, but rather to seek help for my sister and to make others aware of this possible serious side effect that could very well happen. I do think that the manufacturer should make it clear that not only can this side effect occur, but it is VERY DEBILITATING can last for a very long time.
Thanks for your input.

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morning132, the medications for bone loss are still fairly new. If we have access to clinical trials, we note that only a certain segment of the population are used for the clinical trials. The effects may present differently with gender, race, other health issues. We all react differently to meds. I think (unprofessional opinion) that it will take those of us that have chosen to take the meds that will eventually provide the answers. I understand that isn't a good answer when your family member has suffered with side effects, but we make our decisons with the information on these meds that are currently provided. I know with Proctor & Gamble (Aventis-Actonel) requires a signed form from the patient and doctor in order to have the information on the reactions and side effects of the medication. A patient must be willing to share their medical records with the manufacturer. It would seem that other pharmaceutical companies would require the same. If you want the pharmaceutical company to be aware of your family members reaction to Reclast, you may want to check with the doctor. Otherwise, I doubt the pharmaceutical company is aware. Sandi

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sdivas, thanks for your response. I have personally talked to two representatives at Novartis and her physician has called Novartis as well. I have also received confirmation from Novartis that they have documented this problem. So, they are well aware of this issue. And, as I stated in a previous message, evidently one or more of their patients used in the clinical trial experienced this severe pain since they do list it as a side effect. I am also reporting it to the FDA. While I know that the FDA has issued a warning regarding this issue, I think it is our responsibility to notify them of problems. I don't know whether she signed a form like the one you mentioned. This side effect is very serious and needs to be emphasized.

I personally do not take any meds for bone loss. My answer to bone loss prevention is "running". So, I run and hope that this exercise will keep me from suffering bone loss.

My concern right now is to get help for my sister. I am concerned that this constant pain is going to cause her to have a stroke or cause some other serious issues.

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Has anyone done a Bone Turnover Marker test after the reclast? Blood test/urine test will show the production of new bone, as I understand it. Cheap and easy test, no big deal for insurance either. Ntx is the short form of the name.

Also, I stumbled into an attorney website concerning these drugs, and read the scary info. about IV drugs, between ONJ and others this is scary stuff.

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Thanks for your input. The NTX....I assume that the test would just demonstrate whether or not the bone is being strengthened? Also, please provide the attorney website link that you mentioned.

My sister is worse than ever!

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I also had Reclast about 4 mos ago. About one month later I experienced severe pain in my cheek. This lasted about a month and the Dr said it was a muscle spasm. After another month, I started noticing tingling in my fingers, which later went up my arm and into my back. After extensive tests, the Dr said it was carpal tunnel and arthritis. What a nightmare as I am sure it is associated with the Reclast. Pretty soon it will be three months of pain. My Dr. does not think it is related, but I do.

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An update on my sister who took the Reclast infusion about 5-1/2 months ago. She is worse than ever! Not only is her quality of life ruined, but her ability to earn an income is impossible as well. The doctors and drug manufacturer do not seem to have any solution. I am encouraging her to file suit against this manufacturer to stop the distribution of a drug which has literally ruined people's lives. While it may help some, the fact that it has the potential to destroy lives is cause enough to want this drug off the market! My sister is in excrutiating pain day and night! These drug manufacturers all think about the $$$$$ and not the necessarily the patients!

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Morning132, the FDA actually urges drs and patients to report any adverse reactions to these bisphosophonates to their medwatch website. Here is the link if anyone is interested.
http://www.fda.gov/medwatch/index.html

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LindaS: Thanks for the FDA info. The FDA knows about the debilitating pain issue, but decided to approve this med anyway. Now, as to just how serious the pain is, I don't think the FDA has a clue! But, based on the fact that they went ahead and approved the med, I don't they really care. However, it has been reported to both the FDA and the drug manufacturer. The drug manufacturer did nothing but read the disclaimer from their pamphlet to me! I expect to see lots of lawsuits and/or a class action lawsuit regarding this infusion. After having watched my sister suffer all of these months, I hope Novartis is sued by many. I work in the legal field myself and really don't like all of the frivilous lawsuits that I see being filed each day, but this is one lawsuit I feel would be very justified.
Thanks for your advice.

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I had a reclast infusion two months ago and have had bone pain since then. I never knew how much bone could hurt, but they say it is good pain because my bones are using the meds.
Pilates has helped 100%-- With or without reclast do pilates on table with a trainer--It is worth EVERY penny.

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My endo was quite admandant that I need Reclast. Well, so far I'm not backed into a corner like I was for forteo. I've started strontium and have started searching for a pilates instrustor who's trained in osteo. I've had enough pain and from what i've learned here, I don't want to try it. I'm always that one-in-a -million person!

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I took One Boniva ,the once- monthly pill two weeks ago.
16 hours later, I was in allot of pain in my joints, and the right side of my chest, and back. If the pain was on the left side, I would be thinking, I was having a heart attack.
I'm still getting odd types of pain through my body.
Since I had to stay up-right. When I took Boniva, I took out my big dyson vacuum, and vacuumed for over one hour.
I did wonder if that had anything to do with all the pain I did get! Although I have vacuumed like that before, with out pain. except in my lower back while vacuuming. My back never hurt this time while vacuuming.

I'm so glad I didn't do the reclast, or the daily shots everyday.
But I'm wondering if you have a bad reaction from the monthly pill, if having the Reclast would give you the same side effect , if not worse though?

I did call Roche Laboratories about 4 days later to find out when the pain/side effects would leave my body!
The women I talked too, said she didn't know, and acted angry that I would call and complain.
She told me she was Nurse. If she is a nurse , I'm a brain surgeon..I asked her how many people this was tested on? She said 396 people..Omg, I then said I was going to call the FDA. Which I did. I have recieved a paper to fill out and send back..
I was told by the FDA, that Boniva has been tested on allot more then just 396 people.

My Son was in a bad accident and broke his leg in 10 places. He was not healing well after surgery. He was given the same type of drug. He was also in allot of pain. He also took it two times, but he said , Never again.

After reading where there are so many side effects. I'm thinking this could be a blessing in disguse for me to have these side effects, as I'm wondering how healthy this is for my whole body! also my kidneys where hurting me.
I have also read, it does make your bones harder, but not flexable like they should be. Your bones can become like hard china and still break.

I'm now reading about the Alkaline & acid diet to make stronger bones.
Anyone have Information on that?

I just want to say, I do NOT smoke, drink, drink coffee, Or soda's, which all deplete your bones of calsium.

I have arthritis in my wrists and neck , so lifting weights is not for me, I think!

Any suggestions?

Thank you..

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My Reclast infusion was done 11/12/08 and I had terrible adverse reactions that were not noted in their lists of side-effects. The day of infusion I had some nausea but not enough to disrupt my day. The second day, I couldn't even get out of bed. My joints and bones were stiffened and I had a tremendous amount of joint pain. I had trouble even dialing the phone, it was this bad. I called my doctor's office and they said to take Tylenol. I did every 4 hours but I ended up with a severe headache and my stomach was much worse than the day before. The second day was very much like the first with joint pains and stiffness. I then developed an allergic reaction to the reclast and had to have an unscheduled appt with the doctor. He had nothing to say other than, he hoped it would pass and to continue taking the Tylenol. This helped but for several weeks, I continued with stiffness and joint pains. After 2 1/2 wks I finally started feeeling better and can now say that my joints have returned to normal. I did contact the company and let them know that some people do get more than the standard "flu symptoms" as they suggest and that more studies should be performed on the drug to make sure it is safe.

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I took Reclast in Oct. '08 after several years on Fosamax. I had no ill side effects from Fosamax, which seemed to have stopped my bone loss but did little to improve my readings. I chose to stop Foxamax when reports of increased risk of atrial fibrilation hit the airways. I drank 2 litres of water (which I do daily anyway) before my Reclast IV and had absolutely no ill effects from the treatment. I have not yet been tested to see if I've had any benefit, but this is by far the best choice for me. Good luck!

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April, I had similar side effects from Boniva... and it was excruciating pain... and vomiting.... I ended up dry heaving and the pain slowly radiated through my chest out to my extremities with all my bones feeling broken... it slowly left after around 2 weeks.... I am doing the Forteo shots going into my second year now... without any side effects worth mentioning... I have wondered about weight gain but it could be also from slowing down on what I was doing. This year I do plan to get walking at least back into my exercise program as I was told to stop most exercise due to my high fracture risk.. my doc looking out into the next year mentioned Reclast or IV Boniva... as my follow up after the Forteo.... I will cross that bridge with her when I get to it... I can't take on something in the future when I'm trying to deal with today...

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My mother is 82 years old and yesterday was her 2nd reclast infusion. The first time, a year ago, she was told to drink lots of water for two days after her infusion which she did. She did not have ANY side effects, no flu like symptoms, no bone discomfort, nothing and she would tell me because she is a complainer. This year, same thing, all went well, no side effects. Everyone is different and everyones bodies handle drugs differently. Also on her bone scan recently her bone density increased dramatically so Reclast is definitely working for her.

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I am a 59 year old woman who ended up w/lots of stomach ulcers when I took Actonel, so I stopped taking it. I have osteo but am in good health, with no aches, pains or joint problems. Never broken a bone.

My rheumotalogist wants me to consider Reclast and I have been reading a lot about it. I am wondering if the people who report bad side effects are the ones who didn't drink at least 2 glasses of water before the infusion and/or the ones who already had symptoms of their osteo.

Any comments would be appreciated.

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I had my first Reclast infusion in Sept ’08. I had every reaction possible and not mildly. In fact my retired paramedic husband had to call 911 in the middle of the night. After about four days all the symptoms were gone and my bone density showed an improvement after 3 months. I never had any more symptoms.

I am supposed to do the infusion again next month. My doctor said according to the manufacturer that symptoms the next time are mild to nothing. And I will be monitored in the hospital as a precaution. My doctor said for my severity for my age I have no choice- since 3 months showed improvement 15 months should be even greater. I need the improvement and I will be closely watched.

I had Forteo for two years before Reclast. No improvement and no side affects- just lots of money spent.

BB

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