Reclast Infusions: Side-effects & Recovery time
I just had a reclast infusion last week and have had serious side effects. I had the worst flue like aching for 5 days then my lefty arm became full of inflammation in the wrist, elbow and shoulder which caused extreme pain and I lost the ability to straighten my elbow. Ultrasound showed huge amounts of fluid throughout the arm. The right arm is now starting to have the same symptoms. The pain is excruciating. Has anyone else experienced anything like this? Neither the ER doctor nor the Dr. who prescribed the procedure knew what to do to ease the symptoms. Both arms from fingertips to shoulder are swollen and neither elbow will straighten. Anyone else have adverse reactions to the reclast infusion? If yes, how long did it last?
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So glad to have found this group. I started on alendronate a couple of months ago, but the G.I. symptoms were too bad to continue after a pause and treatment with Pepcid. Still having symptoms after stopping. I’m supposed to start Reclast and have been looking for information about side effects/adverse reactions. I tend to have bad reactions to drugs, in general, and I was concerned about side effects that would last due to an infusion. After reading all of your experiences, I’m wondering if there are any studies you can point me to that reflects the risk of side affects/adverse reactions and how treatable they are. The infusion clinic has been calling me but I’m too anxious to make an appointment.
Good evening. Perhaps I can give a worthy hint or two. I have the worst luck with side effects and had a "Stop right here" reaction to bisphosphonates. Not GI issues but jawbone, teeth, eye sockets..... those kinds of issues. I just spent two years building bone with Tymlos. To maintain it, I have one choice...Prolia. (Evenity is a great choice for building bone and protecting what has been built.....and it wasn't available two years ago.)
I felt frightened.....just like you. So, I picked up the phone and called Amgen, the manufacturer. I was connected to a medical specialist who understood my concern. She told me that the company has its own tests and must meet all of the requirements. She would be happy to discuss my concerns. In a few hours, she called back and gave me percentages and types/degrees of potential side effects.
And....yes there are side effects and I will be waiting after my first infusion until it seems safe to head home. She also told me where to go.....the ER.....if I have issues later and help will be coming.
Usually, the clinical trials and other tests are mentioned on the product website. Let's give it a look.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-finding-the-right-osteoporosis-medication/
May you be safe and protected.
Chris
Thanks, they didn't have suggestions but I'm hoping with time my bone pain will calm. I'll check out rheumatology.org. Thank you!
Thanks, they didn't have suggestions but I'm hoping with time my bone pain will calm. That is great you didn't have any symptoms. Thank you!
@gigonganel your welcome I'm having a dexascanin July will see if what my scores are then My Dr has me on calcium 1200 ,Vit D3 also
@joanme @artscaping @qigongangel
I too have had many fears about these drugs, you hear of so many side effects. I try to keep in mind that most often the people who turn to forums such as this are either looking for information, or have had a bad experience. Those who are taking a drug with no problems don't think to join a forum.
The actual percentage of people with really negative experiences is something like 1 in 10,000. Granted, if you are that 1 then it's a very big deal.
I have had bad reactions to so many drugs that tends to feed my fears but after a year spent trying the natural route and having my DEXA get worse I realized I had to do something.
I started taking Tymlos in the beginning of March. So far the side effects have been more of a nuisance than anything else. Initially, I had some mild nausea the next day, and I have been feeling more fatigued than usual, I think. That's something that I can't be sure if it's from Tymlos or from sleeping problems.
I have not yet discussed fully what I will do when I stop taking Tymlos. She anticipates me being on it for two years. Reclast was mentioned but I am somewhat fearful of a drug that stays in your system for a year despite knowing a number of people who do take it with no real side effects. I had a phone appointment with my endocrinologist last week and she said we have plenty of time to think about the next step.
It is a scary thing when you hear of the potential side effects but hopefully those will not be a problem.
JK
@contentandwell @artscaping @qigongangel Thank you so much for all the supportive feedback. I am a nursing professor and a strong vaccine advocate. I had the idea that I was and behaving similarly to those who are vaccine hesitant. Unfortunately, I have not had a good PCP yet at Kaiser, since I joined in 2016 (the one o wanted finally had an opening after trying for months). Ordinarily, I would be able to go to my PCP, have a conversation and get resources, but I haven’t trusted my PCPs enough to do that. Hopefully I can with this one. But it’s helpful to know a way to reach a rep at the drug company. I will start searching for the clinical trial findings, which I haven’t been able to access so far. Unfortunately, I do have a history of adverse reactions, as well as paradoxical reactions, as well as allergies, to several drugs. Adverse reactions from Topamax were multi system and my urinary tract never really completely recovered. So I have a more personal fear of opening myself up to something that will stay in my system unavoidably for a year. I will most definitely follow up and feel like I’m in the right place. Thank you.
Reclast seemed to have a profound affect on me. To much at one time. I have hoshimotos thyroiditis. What I have read was that your parathyroid gland determines the amount of calcium that enters your system. Don’t quote me on this, but check it out. I have had an injection of parolia and had side affects like jaw and bone pain. A dentist advised me that your bones take longer to heal when you have had reclast. I’m am not a health care professional but calcium and vitamin D sounds better than these drugs. Please excuse any spelling errors if any.
@joanme I hope your PCP will be better than your others. I have been through so many PCPs with little luck. I changed last year and have so far only had one appointment with my new one but she is supposedly quite good. My last PCP was very personable but I feel he let me down a couple of times which was the reason I decided to switch.
I did have on PCP who I loved but having young children she chose to become a hospitalist for a better schedule. That was before the hospitals owned all of the doctors and the doctors were on call. Now they never really are, it's a different world, here at least.
@mfratt I hope you have success with the path you are choosing. I tried that for a year, along with plenty of exercise including weights yet my DEXA did get worse. I am now on Tymlos.
Exercise is so important too. I have a book "Strong Women, Strong Bones" and also a booklet put out by Harvard Health, https://www.health.harvard.edu/special-health-reports
These are not free but they do have some free resources also.
JK
I saw the endocrinologist this week for severe osteoporosis. My only options for tx are injections fir the first 2 yrs but I then need to commit to infusion therapy following to maintain bone. This is horrific disease however I also can’t trade living a life of horrific side effects as a form of tx. Thank you fir this post. My labs are still under review and beginning therapy is fortunately likely at least 6 weeks away so I have time to seriously consider what you’ve chosen as an alternative for tx. Thank you for sharing