Reclast Infusions: Side-effects & Recovery time

Posted by cindydee @cindydee, Mar 20, 2018

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?

Interested in more discussions like this? Go to the Osteoporosis & Bone Health Support Group.

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.

REPLY
@joanme

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.

Jump to this post

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

REPLY
@johnbishop

Hello @qigongangel, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Hoping other members with experience using Reclast can offer some suggestions. There is some information on Rheumatology.Org that may be helpful.

Zoledronic Acid (Reclast): https://www.rheumatology.org/Learning-Center/Medication-Guides/Medication-Guide-Zoledronic-Acid-Reclast

Have you checked with your pharmacist to see if they might have some suggestions?

Jump to this post

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!

REPLY
@lioness

@qigongangel Id like to welcome you as well I had my 1st Reclast and didn't have any symptoms I would check as John said with your pharmacist There might be Interaction with the meds your on and a pharmacist would know Good luck

Jump to this post

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!

REPLY

@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

REPLY
@joanme

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.

Jump to this post

@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

REPLY

@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.

REPLY

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.

REPLY
@joanme

@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.

Jump to this post

@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

REPLY
@parrotqueen

You HAVE to do some research before you sign up for these "bone-building" drugs. My DEXA scan came back -5.7 and I was fracturing. My doctor told me I had to get Prolia or Reclast. I did a bunch of research, and learned that these drugs don't really work and the possible side effects are horrendous (osteonecrosis anyone?). I talked to women who had taken these injections and had problems and decided not to take them. They "work" by not allowing your body to get rid of the old, dead bone. It just allows the old bone to hang out, making your bones looks bigger and stronger. But the minute you go off the drug, your body eliminates the old bone in urine and you are worse off than when you started. I decided I would address this nutritionally. I'm taking calcium to supplement what I cannot eat each day, magnesium, boron, vitamin D3 (at least 4,000 IU daily), and vitamin K2 (mk4 mk7). I also take a good vitamin C (NOT ascorbic acid but from berries and rose hips), a good food-based multivitamin, Omega 3, DHA, vitamin B complex, and probiotics. To be fair, I also went off sugar completely. Sugar is death to bones. Sugar causes inflammation and inflammation causes disease - but this is a topic for another day. ALSO, because I was fracturing and there is no family history of breast or ovarian cancer in my family, I started using a very low dose of estrogen and progesterone. I've done the hormones only for one year; whereas I have done the no sugar and better nutrition for more than two years (I've been off sugar five years). I'm going to have a new DEXA scan in a couple months - April or May. I did stop fracturing. I am in a support group on Facebook called Osteoporosis Natural Remedies - it's a very active group and people really know what they are talking about on that group. We have at least one nutritionist that posts all the time. The people in that group have posted fantastic results. I also walk uphill a lot (I live on a hill and I'm an avid gardener). I want to say one more thing before I go - boron is a great trace mineral if you suffer from rheumatoid arthritis, osteoarthritis or fibromyalgia. I take 3 mg two or three times a day with calcium. I have NO more pain in my body caused by arthritis or fibromyalgia. I have told a lot of people about this, and they have also gotten great results. The upper limit dose for boron is 20 mg, so even if you take three a day, you are well below the upper limit. Also, a note on taking magnesium and calcium. Your body can only absorb 500-600 mg TOTAL of magnesium and calcium every four hours. Check your supplement, and take it morning, noon and night if you have to. I could go on and on, but you get the idea. I have made this my primary focus of study for the past three years - and nutrition in general for the past five years. I am reading MD and Ph.D. level books on nutrition. But of course, you need to check with your doctor before you make any changes. Also, I belong to ConsumerLab, which is a consumer watchdog group for supplements. They test supplements to be sure they are what they say they are, they are pure, and they are strength they say they are and will open in the body (some vitamins do not open in the body - they pass right through the body). Another site on Mayo let me post the website: It is http://www.ConsumerLab.com. You can find MANY medical journal articles there on many topics. That's how I found out there was some lead in the calcium I was going to buy - a VERY popular brand of calcium that most people would think would be super clean. BTW: Nutritionists say the best calcium is from shells (oyster, etc.) and sterilized egg shells. Some forms of calcium cannot be absorbed by the body, There is so much to learn. For what it's worth, I saw six endocrinologists and countless other doctors, and with the exception of my OB/GYN who prescribed the estrogen/progesterone, none of these doctors knew one thing to do except to take the bisphosphonate drugs and similar (Reclast, Prolia, etc.). I'm just saying, please do some serious research before you take these drugs - I believe there is a better way. There is not much out there about Vitamin K2 (mk4 mk7), but check out a document called The Ultimate Resource Guide to Vitamin K2 by Chris Masterjohn. You can do a search to it and it will come up. K2 makes sure the calcium goes to your bones, not to your arteries or kidneys. It's almost impossible to get enough vitamin K2 (mk4 mk7) from food unless you are willing to eat Natto. I wish all of us good luck on this journey.

Jump to this post

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

REPLY
Please sign in or register to post a reply.