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Severe leg pain 4 months after Reclast IV

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I am 54 years old, and was diagnosed with osteoporosis in May '08. Had the Reclast infusion in June '08. In October, I began to experience pain from my knees down to my ankles whenever I sat down to watch TV at night. In the ensuing months, the pain progressed to the thighs and hip joint, and is now severe, waking me up at night. Osteoarthritis has been diagnosed, and I have just begun wearing the Flector pain patch. My health practicioners all want me to get another Reclast infusion, but I am really hesitant as I feel that this pain is related to the medication. Any suggestions would be greatly appreciated.

12 replies

I had an injection of Reclast Aug. 6 and am still having problems. Severe pain in the whole body, nausea, headaches and just generally feeling awful. I am trying to keep up with my normal activities, but it is difficult. I have had some type of auto-immune disease (possibly fibromyalgia). I am also a nine year ovarian cancer survivor. There apparently nothing that can be done once the drug is in the body. I am furious that I was feeling so good, and now I have to deal with this pain etc. because of a drug reaction. Any ideas out there as to how long this will go on?
Elaine

Marielle, I am 49 and am experiencing the same debilitating pain in my left leg. I cannot walk or stand for any length of time. My IV was last Nov and the pain has "hit" various parts of my body and then subsides, but will not let up in my left leg. Dr. has tested me for just about everything else and the pain started exactly 1 week after the infusion, so it must be the Reclast. I am very healthy otherwise. If I do not use hydrocodone and a heating pad on my leg EVERYday I cannot function. The sad thing is that because others have not had severe symptoms, some medical practitioners and others have a difficult time believing and understanding the severity of our pain. I am finding more of "us" out there though...this drug needs additional testing!

I have had Osteoporsis for the past 32 years. I am 71 years old. I do not have any form of arthritis. I have been taking Fosamax since its been out. It created stomach problems for me for which I had surgery for. Last week I was given Reclast IV.[Thursday-July 23] Saturday evening I have been having pain in the bottom parts of my legs to the point it keeps me up at night. In the day time I have them elevated in my recliner and when I get up the pain is in my legs. I take advil for it,which does help. I cannot afford to take anything for the Osteoporsis,for I had fractured three ribs just by turning to the right in April. This is the third time in the same area. My bone density has been the same for the past four years[insurance will only pay every two years]. Hopefully my next one will show improvement since I got the Reclast. Only time will tell. My mother had Osteoporsis.

I received Reclast last August. The nurse that applied the iv was very careful. She administered it at a very slow rate, made sure I stayed hydrated, and that I had taken Tylenol. I did not have any side effects that I know of. I had another bone density test done yesterday that showed improvement in my bone mass. The doctor I saw, not the one that prescribed the Reclast, wants me to take Evista. I'm thinking the Reclast worked, why change? Has anyone had a second dose of ReClast?

Again, anyone with severe bone pain post Reclast or any of these medications, needs to be evaluated for Bone Cancer, which can as well cause such symptoms.

Stupid ! Stupid ! Your health care providers should never have given you ReClast as your initial drug. This drug must be "primed" to be accepted by your body. Hence you should have been given Boniva Injection on a quarterly schedule or even one of the oral drugs for your initial medication.

A case of very poor medical management ! Now you are stuck by their mismanagement !

i am fortunately a basicly healthy and very active person except for significant osteoporosis, i was on fosamax for several years, did the forteo shots for 2 years, I think it was 2 years, back on fosamax, then 15months ago the reclast infusion. ..never saw any significant bone density changes. had lots of pain in hips and legs after reclast infusion which really started about 4 months after the infusion. and i did not feel well... i did not repeat the infusion this year , i was afraid to and the doc agreed i had had significant reactions to it. so i am not taking any medication now and i feel great, have no joint pains now. i believe my significant bone and joint pain was from the fosamax too. all the time i was thinking it was the osteoporosis causing my aches and pains , although i was repeatedly told osteoporosis is painless, and it was arthiritis....well obviously it was medication induced pain, it is quite scarey to me that my body has been subjected to these medications...and as i said no sig changes in bone density levels, i skipped this years bone density i'll get one next year ...so we'll see!! (note.. i do not know what the reclast did for my bone density, but i feel so well) i would really like to hear from anyone who has a bd test after the reclast and if it improved..

Dear marielle1:

I searched the PubMed database for any research studies done on people with osteoarthritis (OA) or rheumatoid arthritis (RA) who received bisphosphonate treatment and was surprised to find out that there are more than a dozen such studies done on humans and almost as many studies done on animals with arthritis who were given bisphosphonates. I now realize why the drug companies are reluctant to exclude people with arthritis from bisphosphonate treatment (and lose a large portion of their profit). Here are just 4 of the more than a dozen PubMed studies that indicate that my hunch may have been wrong. These 4 studies say that people who have arthritis tolerated bisphosphonates just as well as people who didn't have arthritis: http://www.ncbi.nlm.nih.gov/pubmed/16645968 http://www.ncbi.nlm.nih.gov/pubmed/18266400 http://www.ncbi.nlm.nih.gov/pubmed/15899049 http://www.ncbi.nlm.nih.gov/pubmed/17075851 I was unable to find any PubMed studies that said that people who have arthritis have a higher risk of suffering negative side effects during bisphosphonate treatment.

Hi Marielle1,

I, too, started having pain shortly after starting a bisphosphonate (generic Fosamax, oral, 70 mg 1 X weekly) and the doctors all say it's osteoarthritis. It started first with both knees, then both shoulders, the fingers on both hands, and my neck. I discontinued the medicine after three months, it's been three months since I last took it and the pain continues. Knee X-rays are normal for a 49-year old person. I blame the Fosamax, but the doctors deny it could cause my symptoms. It's just a "coincidence" that my problems started when I started the medicine. Unfortunately, I had not read the package insert, and so continued taking the medicine even after my knees started hurting.

I think RMchavin misses the point when he says people with arthritis should not take these drugs. You didn't have osteoarthritis BEFORE you started taking Reclast. I didn't have osteoarthritis BEFORE I started the generic Fosamax. So how could we have known to avoid these drugs? Perhaps these drugs trigger osteoarthritis in some people?

I, for one, am through with bisphosphonates and have begun taking strontium citrate--against all the doctors' advice. They say no extensive studies have been done, it's not regulated by the FDA, I should wait until strontium ranelate becomes available, yadda, yadda, yadda. We'll see how it goes.

Good luck to you, Marielle1! I wish you relief from your pain.

Susan

Norvartis has been of no help to me. I haven't had the leg pain as you mention but ever since I had the infusion my teeth hurt. This is very scary because of the osteonecrosis one can get while being on these bisphosphonates. I was even upset because the lady was just reading to me what was on the pamplet.

Dear rmchavin,
Thank you for responding and for giving me the links to the other articles. I'm still not sure what to do, but I definitely appreciate the info re arthritis and Reclast.
Thanks again.

Dear marielle1:

Intravenous Reclast (zoledronic acid), injected once every 1 year, is usually somewhat better tolerated than other bisphosphonates. However, here are 2 web addresses from askapatient.com, a website first shared on NOF Inspire by Char42: http://www.askapatient.com/classreport.asp?class=CALCIUM%20METABOLISM http://www.askapatient.com/viewrating.asp?drug=22080&name=RECLAST Note that the only patient who gave Reclast the lowest possible score of "1" had arthritis. In addition, note that the only patient who gave Reclast the second lowest possible score of "2" also had arthritis. (You mentioned that you now have suddenly been diagnosed as having osteoarthritis). So it might be mentioned in many future scientific studies that people who have arthritis might be better off avoiding Reclast, or for that matter, all bisphosphonates. If I were you, I would politely report to Reclast's manufacturer that you suspect that people who have arthritis might be better off avoiding Reclast. The only osteoporosis drug that is known to be friendly to people with arthritis is Evista (raloxifene): http://www.ncbi.nlm.nih.gov/pubmed/18435803 http://www.ncbi.nlm.nih.gov/pubmed/17907171 Finally, here is a PubMed study that might make you feel better: http://www.ncbi.nlm.nih.gov/pubmed/19530978

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