• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Adverse reaction to injectafer.. what now?

M

Malice67

Today I had an iron infusion (specifically injectafer) and within five minutes of walking out of my hematologist's door I was back with tightness and pain in the chest, elevated blood pressure (148/85), redness in the face, and a general sense of something wrong. They had me sit with feet elevated and gave me saline IV with Benadryl added, monitoring my vitals periodically. After a half hour or so the symptoms were greatly decreased, but just to be certain, they put me in a wheelchair and rolled me over to the ER (office building is connected by tunnel to the hospital) and I had an EKG. four hours later the ER doctor spoke to me for about 45 seconds to say EKG was fine and the blood test for cardiac markrs came out negative as well. Sent home with directions to follow up with hematologist in next two days.

So... I have had the medicine before with no issues. Not sure why it was problem today. Has anyone been able to continue getting infusions after an adverse reaction like this? My ferritin is so low its a joke (went from 247 in May to 3 in August-- yes single digit measurement), so I obviously need more iron. What are some questions you would ask the doctor before trying to continue iron therapy?
 
S

shamrock15

If they don't know the cause they can't say it won't happen again. There is a chance that the incident was coincidence - was there something that you may have been anxious about? They may choose to continue iron but provide the benadryl at the same time so that you don't have reactions to it. Many possible ways to continue. Certainly at this point it doesn't sound like discontinuing iron is an option for you.
 
M

Malice67

I agree, I was thinking of having the injectafer given with benadryl as I have seen others here that get them together. And staying at office longer afterwards just in case.

not sure what other options for iron there at this point. I don't tolerate oral iron, and even if I did, my ferratin level is way too low. Hemaglobin levels at this point aren't low enough for a transfusion (sitting at 10.1) and that is a little too drastic of a step unless there are no other options.
 
A

aypues

Was it 750mgs? What time duration was the infusion given over?
I'm scheduled for 1000mgs Injectafer next week, also was down to 2.5 in ferritin and 10.1 HGB.

You can also try Venofer but it's a lower dose, just 200mgs normal dose, and I just had a 500mg infusion but it took 4 hours!! Ridiculous, and my vein has been sore after for a few days.
 
my little penguin

my little penguin

Moderator
Staff member
Benadryl would not stop a reaction
Think of Benadryl like a stewardess on a plane during a crash
It just there for comfort and doesn't stop anything .

Pre treating with iv steriods up 24 hours ahead can sometimes lessen the risk of a drug reaction ( Ds does this with Mre contrast )

Only an epi can increase the chances of stopping an reaction after it has started if given early enough but even then no one can guarantee it won't progress quickly to anaphylactic shock ( heart stopping /organs shutting down /coma/death)

Hope your GI can come up with a plan
Ds had ferritin at a 9 and used iron pills to bring it up
Did take a few months though to do this
 
M

Malice67

aypues said:
Was it 750mgs? What time duration was the infusion given over?
I'm scheduled for 1000mgs Injectafer next week, also was down to 2.5 in ferritin and 10.1 HGB.

You can also try Venofer but it's a lower dose, just 200mgs normal dose, and I just had a 500mg infusion but it took 4 hours!! Ridiculous, and my vein has been sore after for a few days.
Click to expand...
I used Venofer in 2014 with no side effects but switched to Injectafer at the end of 2015 due to the higher does in less time. This is the third time I've had Injectafer and first time I have reacted. 750mg over 32 minutes, so in twice the minimum time so it wasn't due to receiving too quickly. I didn't think you could get more than 750mg per week... see this link:

http://www.injectafer.com/safety-and-dosing/dosing_and_administration/

hope you get your ferritin up soon.. I know how incapacitating those numbers are since I am running almost exactly the same. good luck next week!
 
M

Malice67

my little penguin said:
Benadryl would not stop a reaction
Think of Benadryl like a stewardess on a plane during a crash
It just there for comfort and doesn't stop anything .

Pre treating with iv steriods up 24 hours ahead can sometimes lessen the risk of a drug reaction ( Ds does this with Mre contrast )

Only an epi can increase the chances of stopping an reaction after it has started if given early enough but even then no one can guarantee it won't progress quickly to anaphylactic shock ( heart stopping /organs shutting down /coma/death)

Hope your GI can come up with a plan
Ds had ferritin at a 9 and used iron pills to bring it up
Did take a few months though to do this
Click to expand...
After my reaction they did give me IV hydration with Benadryl and my blood pressure did go back down. Not sure how much the Benadryl helped or if it was the hydration and / or just time. My daughter has food allergies which have cause her to twice need an epi (her first reaction at age one and 11 years later when doing food challenge at the allergist office). Every reaction in between has responded to Benadryl and the epi wasn't needed. So I know there is a place for Benadryl in the grand scheme...

was not aware of using IV steroids the day before.. will have to look into that, thanks!

My ferritin was 247 at the end of May and dropped to 3 in the middle of August. Huge drop for 2.5 months. That, coupled with previous intolerance to oral iron supplementation has us looking at continuing on the IV route, but switching form Injectfer to Venafor which is lower dose and I have had more frequently in the past. Giving two weeks before trying again...
 
A

aypues

Malice67 said:
I used Venofer in 2014 with no side effects but switched to Injectafer at the end of 2015 due to the higher does in less time. This is the third time I've had Injectafer and first time I have reacted. 750mg over 32 minutes, so in twice the minimum time so it wasn't due to receiving too quickly. I didn't think you could get more than 750mg per week... see this link:

http://www.injectafer.com/safety-and-dosing/dosing_and_administration/

hope you get your ferritin up soon.. I know how incapacitating those numbers are since I am running almost exactly the same. good luck next week!
Click to expand...
Here is a great article in Up to Date:
https://www.uptodate.com/contents/treatment-of-iron-deficiency-anemia-in-adults

Injectafer can go up to 1g. You can also try INFed up to 1g, low molecular weight iron dextran, but the reactions are a little higher...not nearly as bad as the old high molecular weight iron dextran though.
 
J

jcashen87

I am getting a referral to a hemotologist and looks like I will be starting IV iron. I just can't tolerate Oral Iron. I suffered through taking a little liquid iron and 25mg gentle iron capsule every day but it hurt my gut really bad. I have a pretty narrowed stricture and I think with it drying out my stools and firming them up pretty hard it hurt right there more than the every day stool and gas going through.

I was waking up in the middle of the night every hour or so from the pain in my gut. Which i feel every day but not usually that frequently and it wont usually wake me up.

I have bad anxiety around anything to do with the Dr. Even with anxiety my blood pressure is always good 120/78. I was wondering Malice67 if you experience the chest tightness and blood pressure problems at other times when you don't get IV iron. I know i need my iron up my transferrin sat was 6% and my "Iron" (thats how its listed on my test result patient portal, I assume thats ferritin test) was at 19.

Everyone I have talked to says they haven't had a reaction to IV iron but I worry about everything. I am only allergic to Tree nuts that I know of. Anyone else had reactions to IV iron and is it possible this was coincidence, since you didn't react before Malice67?
 
M

Malice67

jcashen87 said:
I am getting a referral to a hemotologist and looks like I will be starting IV iron. I just can't tolerate Oral Iron. I suffered through taking a little liquid iron and 25mg gentle iron capsule every day but it hurt my gut really bad. I have a pretty narrowed stricture and I think with it drying out my stools and firming them up pretty hard it hurt right there more than the every day stool and gas going through.

I was waking up in the middle of the night every hour or so from the pain in my gut. Which i feel every day but not usually that frequently and it wont usually wake me up.

I have bad anxiety around anything to do with the Dr. Even with anxiety my blood pressure is always good 120/78. I was wondering Malice67 if you experience the chest tightness and blood pressure problems at other times when you don't get IV iron. I know i need my iron up my transferrin sat was 6% and my "Iron" (thats how its listed on my test result patient portal, I assume thats ferritin test) was at 19.

Everyone I have talked to says they haven't had a reaction to IV iron but I worry about everything. I am only allergic to Tree nuts that I know of. Anyone else had reactions to IV iron and is it possible this was coincidence, since you didn't react before Malice67?
Click to expand...
I have had at least 14 iron IVs in the past 2.5 years and have only reacted to one of them. SO yeah, I do get the possibility of a coincidence. In trying to sort through why this time it did occur to me that I don't think I've ever had one in the summer, and I do sometimes tend to get a bit dehydrated in the summer. I really didn't notice the chest tightness until I got into the car - parked in the sun for an hour on a 93 degree day. So maybe the heat and dehydration added to the problem and getting back into air conditioning and getting two units of saline with Benadryl helped rehydrate me and bring my pressure down. But I am certainly not betting the bank on that idea!

Talked with nurse at the hematologist office who had discussed it with him. Looks like most likely course of action is switching back to Venofer. He is going to talk with me on September 12 when I come in for next IV.

As to your other question - I generally run a low blood pressure and have only had chest pains two other times - five years ago when I had a pulmonary embolism within a week of surgery and 2.5 years ago when I was so anemic my hemoglobin was at 4.6 So chest pains have only happened with big events for me in the past. Not to scare you off from getting IV iron!!! I have had 13 infusions with no problems. And this was controlled within an hour.

good luck getting your numbers up!
 
J

jcashen87

Thank you Malice67, sounds like you've had lots of good infusions. The first time you get one are they prepared to treat people that could have a reaction to the solution? It sounds like to me the IV Iron through my provider here in California is outpatient. Me being the worry wort I want them to be prepared with a crash cart for me lol.

One girl a co worker saw on facebook was getting IV iron and called it "Black Death" and said it makes you feel flu like with pain or vomiting and at worst, feeling like fainting. I have never heard people describe it that way. All the people I have met in real life who have done it swear by its effectiveness. They say it worked really rapidly for them too. It sucks feeling weak all the time, being at work and getting sore from simple daily tasks. So I think its worth the risk for me at this point.

Thank you all.
 
M

Malice67

jcashen87 said:
Thank you Malice67, sounds like you've had lots of good infusions. The first time you get one are they prepared to treat people that could have a reaction to the solution? It sounds like to me the IV Iron through my provider here in California is outpatient. Me being the worry wort I want them to be prepared with a crash cart for me lol.

One girl a co worker saw on facebook was getting IV iron and called it "Black Death" and said it makes you feel flu like with pain or vomiting and at worst, feeling like fainting. I have never heard people describe it that way. All the people I have met in real life who have done it swear by its effectiveness. They say it worked really rapidly for them too. It sucks feeling weak all the time, being at work and getting sore from simple daily tasks. So I think its worth the risk for me at this point.

Thank you all.
Click to expand...
I get mine at the hematologist in the same room he gives chemo in, so yes it is outpatient here as well. His staff had me on a new IV + medicated within 3 minutes of me walking back into the office and that included getting me from the waiting room into a real room. I know they have an IED in the hall as well. The only reason I ended up at the ER was because he thought it would be prudent to give me an EKG to make sure there was no lingering effects that weren't obvious. And being that his building is connected by underground tunnel to a hospital, it was even easier for him to make that suggestion, since they just wheeled me over.

NO IDEA why the other person referred to it as "Black Death" !!! Never stomach pains or vomiting with the IV -- that is what the oral stuff does to me||
 
A

aypues

I had my first Injectafer infusion on Weds. It went fine. They only gave me 750mgs though. It went fine...no reactions. Very quick...like 45 mins start to finish with post monitoring. I'll be doing it again on the next Weds.
 
M

Malice67

aypues said:
I had my first Injectafer infusion on Weds. It went fine. They only gave me 750mgs though. It went fine...no reactions. Very quick...like 45 mins start to finish with post monitoring. I'll be doing it again on the next Weds.
Click to expand...
glad it went well -- good luck next week
 
C

Charlotte.

aypues said:
that's the same drug - ferric carboxymaltose - different brand name.
Click to expand...
Oops, I see. Not familiar with the US brands, sorry.

Ferrlecit, Venofer and Jectofer would be 3 EU alternatives, no idea if they are available in the US as well. That would be another agent then.
 
M

Malice67

8.5 hours from next infusion... can't sleep so trying to get some work done... ended up here. I was fine until Friday afternoon and then my boss started talking to me about the appointment and I started crying. at WORK!!! I felt like a bit of a baby, but she gave me a hug and a chocolate bar so at least she understood.

I can tell my iron is still low - went to IKEA yesterday and had to stop and rest twice in the two hours we were there. So not getting iron is not an option. The plan is to go back to Venofer this time, which of course is a lower dose so I'll likely have to go again in two weeks. My nerves are fried and I'm super grouchy... I just want to stop being so tired -- I am behind at work and am being just the worst wife and mother ever.

sorry for venting -
 
A

aypues

Malice67 said:
The plan is to go back to Venofer this time, which of course is a lower dose so I'll likely have to go again in two weeks.
Click to expand...
200mg Venofer? 500 mg? I was given about 8 of the 200mg Venofers and they didn't do much. I eventually made it to a hematologist who put me on the 500mg version but they could only do it over 4 hours! what a nightmare. My vein was sore for days after. Then I found out at another infusion center that it can be done over an hour. Who knows. Every place is different. I think what actually helped the most was stopping the bleeding by going on a course of prednisone. Then the IV iron can actually work. I've done 2 750mg Injectafer infusions with no issues, luckily. Will retest cbc, iron, and ferritin this Fri before my 2nd Remicade infusion.
 
A

aypues

Malice67 said:
No reaction to the Venofor! will have ferritin results on Wednesday and decide if I have to go in again.
Click to expand...
Congrats on the Venofer working? was it standard dose, 200mg?

I just got the EOB about the Injectafer. It's so expensive!!!
They charged my insurance $3490, with allowed amount $1965. Insurance paid $1547 and my copay is $417!!! My Venofers copays in a non hospital infusion center were so much cheaper! $20 and $36 each at two different places. I guess at this point is doesn't even matter. I'm almost at my out of pocket max for the year. I'm on a Gold 80/20 plan. I'm thinking for next year I may have to go to a Platinum plan again. They're so expensive though for the monthly premiums!
 
M

Malice67

aypues said:
Congrats on the Venofer working? was it standard dose, 200mg?

I just got the EOB about the Injectafer. It's so expensive!!!
They charged my insurance $3490, with allowed amount $1965. Insurance paid $1547 and my copay is $417!!! My Venofers copays in a non hospital infusion center were so much cheaper! $20 and $36 each at two different places. I guess at this point is doesn't even matter. I'm almost at my out of pocket max for the year. I'm on a Gold 80/20 plan. I'm thinking for next year I may have to go to a Platinum plan again. They're so expensive though for the monthly premiums!
Click to expand...
OUCH! that is one of the problems with Injectafer == but wow, yours was twice mine, and DC medical prices are usually high -- billed $1,920 but discounted to $992 -- and I only paid $20... its the same copay for me if I get Injectafer or Venofer. I get both at my hematologist's office which might be why it is so much less than yours... sounds like you had yours at the hospital. (His office is connected by tunnel to the hospital so if there is a real emergency like a couple weeks ago they can get me right over.)
 
A

aypues

For anyone that's had Injectafer, how are your joints and back doing? Mine are not doing well. We tested for antibodies to Remicade because that can also be a cause, but I have none. Now I am thinking I have some reaction to Injectafer. I did 2 doses in September and 2 doses in November. Around the 2nd set of doses in November I started to develop joint and muscle pain all over my body - neck, back, elbows, knees, feet, etc. Now I am reading on some anemia forums that these side effects can be LIFE LONG!!! WTF! I really hope this isn't true. I feel like an old man at only 38 years old! this isn't right!!
 
Layla

Layla

I have joint pains, mostly in my fingers and toes but didn't notice any difference when I last had an injectafer infusion a few weeks ago.So sorry, can't help you with that one.

My ferritin is now back up to 212 and I'm finally getting some air!

Can't believe the cost of it over there though!:eek::ybatty::thumbdown:
 
Last edited:
A

aypues

my little penguin said:
Have you seen a rheumo ?
Unfortunately spondyloarthritis can develop with Crohns and is fairly common to happen .
Ds has juvenile spondyloarthritis and has not had any iron infusions yet (ferritin is hovering at the bottom of normal and he can't tolerate iron supplements)
http://www.spondylitis.org/Enteropathic-Arthritis
Click to expand...
Not recently, a long time ago I went for some wrist pains but they said it was tendonitis and needed physical therapy which fixed it. I'll look into it again. Crohn's is such an awful disease, it's one thing after another.
 
You must log in or register to reply here.
Top