In January this year 2019 I had my 1st (and last!!) Infusion of Zoledronic Acid, I was told that I could have flu type symptoms for a week and my joints may ache more, (I have Hypomobility Ehlers Danlos Syndrome hEDS, & Gut Dismortility GD) but I wasn't prepared for the awful reaction that I had, vomiting, shaking, temperature and pain like I've never experienced, I then ended up in hospital for 5 days on a drip, then got an infection.... My gut issues worsened, was diagnosed with IBS since the infusion on top of GD & it has taken until now to start putting on weight again. Apart from seeing a lovely Dr while I was in hospital who advised that Rheumatology would be informed & be in touch & not to have this infusion again due to the reaction I had, no one has been in touch so I am totally lost of why this happened & to protect my bones.... I am unable to take HRT in any form, my GP is unsure but at least I have a Physio who has been great have gone right back to the beginning with very light exercises to do daily. It has been soul destroying. My diet is very limited as I am unable to tolerate dairy, wheat or gluten... Any tips would be welcomed.
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Charlie50
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Hi Charlie50. I’m sorry you are having such woes. Not having any medical training or taking any medication, I can’t offer any advice apart from look into the usual supplements many of us take vit d3, k2, boron and magnesium being the main ones. Don’t forget that calcium comes from many places other than dairy (green leafy veg for one).
I would ring your hospital and ask for the Rhematology secretaries. They should be able to see if an appointment has been requested. If it hasn’t, then the process can get started. At times things mentioned whilst an inpatient, such as follow up appointments, can get missed if different specialties are involved. If an appointment is in the pipeline they should be able to tell you - I know the wait can be a while sometimes but at least you will know it will definitely happen.
Also you can report to manufacturer. ..I think that will be Novartis but check. They should have a free call number for this purpose online.
You do not have to prove causation. Just report that you wete treated with this drug, the circumstances, and what happened to you. They will take your info and ask some questions. In the US I believe they are required to report this to the FDA. Ev3ntually this could help others!
Wow, you have really been through the wringer. So have I. I also was diagnosed with osteopenia. My doctor (an internist/rheumatologist) suggested I take a Prolia shot and that it would be out of my body in 6 months. Totally Wrong. I took the shot 2 years ago in January of 2017. Starting 2 weeks after, I began having cold spells that lasted all day, followed by hot flashes (mine have been over for 10 years) and night sweats, severe gut cramping that just doubled me over, and diarrhea spells. In the beginning it was about 5 days a week of this. Now it is about 2 or 3 times a month for 4 or 5 days. I am thrown from diarrhea to completely backed up. I had mild IBS previous to the shot, but now it is severe. I have lost about 15 pounds. It turns out that there was a contraindication on the Prolia by Amgen the manufacturer, to not give the shot to anyone who had bowel surgery (I have had one on small intestine and one on large intestine), but the instructions were placed on page 14 of a 30 page document on the Internet which I did not read until After the shot. And, it also says do not take the shot if you have a poor immune system. My immune system has the type of allergies that you have. I cannot have any grains at all, very little dairy, and several other food and mold allergies. It has been 2 years and the Prolia shot that I had 2 years ago has completely changed the way my gut works. It is now completely unreliable. And, all my allergies are worse. I have also developed some to chemicals that I did not have before. So please, in your search to find help for your bones, do not take a Prolia shot. Read up on it. Many, many people have had bones break because they stopped taking regular shots. I am afraid I do not have any advice to give except if you do work with someone on bone health, I would go natural. I would stick to a type of calcium that you can take easily and add in Vitamin D, all levels of which can be monitored through blood testing. Walk. It is a weight bearing exercise and if you can do it, please do. It will help all your bones. But be sure and follow up with your doctors so you can do whatever you can do carefully for yourself. Right now I have no answers to help me feel better. I still feel like garbage and react to everything. I am thinking about seeing if there is a class action suit against Amgen, the manufacturer of Prolia. Who is the manufacturer of the drug you took? My new rule, for myself is, do not take any drug that isn't a pill and cannot get out of my body quickly in case I have a reaction. No more long term shots or IVs of drugs for me.
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