For the last several years, I have needed iron IV infusions to help remedy and prevent Iron Deficiency Anemia. I've shared my stories about Dextran (along with my severe reaction to it), Venofer and now I'd like to share my experience with Ferrlecit. I had my first Ferrlecit infusion last month.
My Iron Infusion Experiences
- Iron Infusion Side Effects - My Story
After a successful first round of iron infusions, my second round was anything but! Here is my story of side effects with Dextran.
- Intravenous Iron Infusion and Me
Wondering what a round of iron infusions might look like? Here is my experience.
- My Iron Infusions - Switching from Dextran to Venofer
After a bad reaction after an iron infusion, I was switched to Venofer. This is my story.
- My Life Infused
A new blog sharing my infusion experiences.
A Surprise When Going In For My Last Infusion
Every few months, my hematologist tests my ferritin levels. Once my ferritin is ten or less, we know it is time for another infusion.
Ferritin is a great indicator of how likely you are to become anemic. The ferritin binds with iron so if there there is no ferritin, you are in danger of becoming anemic quickly. By being proactive with the ferritin scores, we can prevent my hemoglobin scores from dropping.
I know when my ferritin is low or non-existent because I get so very tired and start napping again.
So, last month, my ferritin scores were at 8. Normal ferritin levels are between 12 and 200 so this is definitely on the low side. I've had tests, though, where my ferritin has been undetectable.
I went in for my infusion expecting the normal Venofer infusion I usually get. Because I have been starting to react a bit more to the Venofer, I get Benadryl through the IV as well. I was told, though, that the Venofer was not in stock and they were going to try a new iron.
I've shared about my horrible side effects with Dextran so, of course, a new iron quite frankly scared me a bit. I knew I need the infusion so I agreed to it. This new iron is called Ferrlecit and rather than the five infusions I need with the Venofer, I'd only need two spaced a week apart. Because we were about to go traveling, they agreed I would just have one this round and test in a month to see if it worked.
My Ferrlecit Experience
As usual, I sat in my comfy chair along with a room full of others getting chemo as well as a few others receiving iron. It's easy to spot the ones getting iron because their IV bags are a dark red color.
The nurses know me and welcomed me back. One of the nurses took my blood pressure. She said that with this iron, it was important to monitor because one side effect is a drop in blood pressure. My blood pressure was normal.
Because I don't do that well with iron, they started by giving me Benadryl through the IV. As usual, once it hit (and it does hit quickly), I couldn't speak very coherently so I just closed my eyes and waited for the iron. Turns out this was a push. That means that the nurse very slowly pushes the iron into me over the span of about two minutes. With Dextran, it would take three to four hours and Venofer took about an hour or two. Two minutes is nothing!
As she pushed the iron through, I could feel it traveling up my arm. Felt like a bunch of little stings. It wasn't painful but, must admit, didn't care much for the sensation. Once she was done, I wondered if I could go despite the fact that I was still groggy from the Benadryl. The nurse said that with this iron, they needed to monitor me for about 45 minutes to an hour.
After about 45 minutes, they took my blood pressure again. Don't remember what it was but it was very low. They said they had to monitor me longer. About a half hour later, they took my blood pressure again and it was back in the normal range. They said I could go.
My Side Effects with Ferrlecit
Side effects are pretty normal for me. I'm not one of those ones who is feeling great after my infusions.
I went home and, because of the Benadryl, I napped and that is what I do after each infusion.
Other than feeling really tired for a few days (again, really normal for me), I had no side effects. That is very unusual.
A month later, my Ferritin scores are still good so no second infusion necessary. We're retest in a couple months.
March 2015 Update - Another Infusion
I've shared on my blog about my latest infusion experience but just wanted to leave an update here as well. In February, my ferritin levels were really low again. For me, this is pretty normal and I've been having infusions every three to four months now for the last couple years. What was nice though is that rather than a round of five infusions, I only had one last time and it still lasted almost the entire time.
My infusion a few weeks ago went smoothly. They switched back to an IV drip rather than a push and that just felt better. They said they were running into complications with the push. Other than the usual exhaustion, no side effects. Happy about that.
Three weeks later and I feel a lot more energy after only one infusion.
Have You Tried Ferrlecit?
I would love to hear from you especially if you have tried Ferrlecit. I'll be switching to this iron because, so far, it is the easiest on my system. How have you done with it? Or, do you use another type of iron? If you're about to start infusions, of course, I'd love to hear from you as well.
Would Love to Hear From You
Kay (author) on December 29, 2015:
I am going to talk to my doctor about B12 shots. Others have mentioned them and I need to see how my B12 is doing. Thank you!
lndagrl on December 22, 2015:
Hi Cari Kay. I'm so happy you are doing better on the Ferrlecit. That was the one I started a little over 3 years ago when I was at 2. I'm glad that we continued on that IV. I had a gastric bypass about 6 years before and had been feeling so tired (actually falling asleep with my fingers on the keyboard at work - not good!) that I could hardly move. It was explained that I have malabsorption syndrome and that I could eat liver 3 times a day every day and it wouldn't help with my iron/anemia. When I first began infusions they didn't seem to be working - tired all of the time and especially the few days after treatment. The only good part was that I didn't feel like eating at those times either. Once I began to maintain numbers we started to progress from every other week to every three weeks and then finally to once a month. When we went to 3 months it started to fall apart. My doc decided to introduce B12 shots. After the past year on a monthly B12 and an infusion every 3 months I am up to 210. I didn't think it was possible. I still fall asleep in my recliner at night but it is because I am tired from work and activity and it is later at night not at 7 p.m. I had an infusion 2 weeks ago and am now scheduled for a B12 shot every month and an infusion in 6 months with a blood test at 3, 4 and 5 months stay aware of my numbers and how they are holding. I was told that I would need infusions for the rest of my life but if it could be twice a year I would be thrilled. I swear by the B12 shots - they seem to be what has helped my numbers hold. Good luck to you and thanks so much for sharing and being of service to others.
Kay (author) on December 14, 2015:
You really have me intrigued with the PPI thing! I take those pills and wonder if they've been a factor in my side effects. I don't take them all the time though, only when my symptoms are bad. I am going to try this for my next infusion. We'll see what happens. Thanks!
Monique on December 10, 2015:
I'm on ferrlicit now on my 4th infusion. I previously had one infusion on venofer, which landed me in the ER with swollen hands feet and legs and extreme pain in my tummy. After 5 hrs of increased swelling and stomach pain peeked. The side effects began to revese itself slowly.. It took 3 days for the swelling to completly go away and about 2 days for the stomach pain to stop. My first infusion with ferrilict ended in the exact same episide as the venofer. My second infusion of ferrilict i had the same side effects however swelling did not last as long and stomach pain didnt last as long. 3rd ferrilict infusion was exactly like the first. My dr the nurses and the ER dr didn't have any understanding as to why I kept having these side effects. But we all decided to continue the round of 8 infusions i was scheduled deciding the benefits outweighed the risk and I was closely monitored for chest pain wheezing and swelling of the throat or lips. Just before my 4th infusion I realised something very facinating which i'll share now. Before the start of my ferrilict experience my dr placed me on proton pump inhibitors perscibed daily for 1 month. For agressive heartburn i didnt even realise that i had due to living with it for so long. The first infusion of ferrilicit I had forgotten to take the PPI that morning. The 2nd infusion I had remembered and the 3rd I had forgotten again. I also was not on a PPI when I had venofer despite heartburn symptoms which i shared with that previous dr. For my 4th infusion i decided to wait till my infusion stated that day to take my PPI. And I had no swelling and no stomach pain at all. I will be trying this approach of taking my PPI right before the infusion for my next 4 infusions to really see if I have no side effects once again.
Kay (author) on September 27, 2015:
Are you seeing a hematologist? I had one doctor who was finally going to send me to one but we moved and our new practice wanted to start from scratch with testing. I ended up with really low levels that put me in the ER and they sent me to a hematologist.
Wen on September 25, 2015:
After a year of feeling crappy I've been tested and have ferritin and iron level are both 3 and hemoglobin is 6.5. I've asked my doctor about an infusion but he doesn't seem particularly interested. I'm just not wanting to go another year trying to build up my iron using supplements and diet.
Kay (author) on May 31, 2015:
Wow! Having eight and a half infusions seems extreme. My doctor said that generally they do two infusions with it and that is it. I wonder if they overloaded your system with iron. You should get your ferritin checked. I am so sorry you are going through so much. How awful. One thing I've learned with iron, you don't want to overdo it. Please, keep me updated.
Shana on May 30, 2015:
I just finished my last bag of Ferrlecit two days ago. I had my first round (5 infusions) back in March, but a month later when my levels weren't high enough, I went back for 8 more. For a day and a half I have been in SO MUCH PAIN! I thought I must've thrown my back out, or slipped a disc. But all I've been doing for the last two weeks was sitting in a chair getting infusions and napping. I was going to make an emergency appointment with a chiropractor tomorrow, but then I read your post about having back and abdominal pain. I looked up the side effects for Ferrlicit, and back pain and achy joints is on the list. It didn't occur to me because the first round of Ferrlicit, gave me no side effects at all. So glad I came across your blog! It probably saved me $300!
Kay (author) on April 13, 2015:
I am so sorry you are going through all this. I wish I knew what was causing this too. I get a little weary of it all. (((hugs))) to you.
carol59 on April 11, 2015:
I've been having iron infusion now since 2009 after I spent 4 days getting 4 units of blood. My hemoglobin was down to 4.5. I' ve have gone as long as 9 months and as short as 3 months between infusions. My ferratin has dropped below tracable amounts in my liver. My last blood test after a round of 4 IV's a week apart with ferrlecit, I was still down to a 5 on my ferratin. So I'm on #3 of 4 infusions. My veins hurt, and this time the nurse put the IV in my forearm and it was extremely cold going in. My forearm was quite sore, and today I noticed a good size knot a few inches from the IV site. So I have a warm compress on it. I am truly tired of the poking, and wish there were answers as to why I have this deficiency. I've had 4 upper & lower GI's, 2 capsules for the middle as well as the thick shake! They can't find any bleeders, they don' t have any clue. I've seen 3 Hemotologist, the lastest from Loyola. It is nice to know I'm not alone.
Kay (author) on January 10, 2015:
Megan, I was really nervous about it as well but, so far, the Ferrlecit has been easiest on me. I've only had one infusion with it though but my levels went up and I had no side effects. Please, let us know how it goes.
Megan on January 10, 2015:
I have my first infusion on Tuesday and the 2nd is already scheduled for the following Tuesday. My ferritin is less than 1! I have not been able to get it back up since my c-section in July. Thank you for your blog, Ferrlecit is different from the infusion I had in July and I have been anxious about something different! Hopefully this works!
Kay (author) on January 04, 2015:
Did you have an infusion with Ferrlecit? I ended up having only the one infusion. With the holidays and company, I didn't want to risk feeling ill so the doctor okay skipping the second. Had my blood levels checked about a month and a half later and my ferritin is in the 30 range which is fine. I'll go get tested again in a couple months. I didn't have side effects with the Ferrlecit but have with the others. Many women feel that way after infusions. You are not alone. Just read a bit of your blog. You should share your infusion story. Let me know if you do. I'll link to it from here. It really helps being able to read these stories.
julia on January 03, 2015:
i found your blog about 3 days before my infusion in the beginning of december. i was so glad to read about your experience. my dr did not tell me about the side effects or even how long the infusion would take. its been less than a month and i already feel terrible again. how soon after your first infusion did you need the second? i have my health story posted on my blog at juliesspoonfulofsugar.wordpress.com.
Jim from Kansas on December 26, 2014:
Glad that a second infusion wasn't necessary.