My Dd suffers from pretty severe anemia. Our family Dr finally sent her to a hematologist who wants her to receive an iron infusion. He told her she will feel amazing afterward. In reading about it, it seems like one of the main concerns is allergic reaction.
She has a couple of food allergies (cinnamon is her worst one) and she reacts significantly but not life-threateningly to fire ants. Her brother has multiple life-threatening food allergies (tree nut and shellfish).
Does anyone know about these infusions? What would be indicators that would make you hesitant to go forward with the procedure? Any possible long term negative side effects? She is only 19 and didn’t ask the questions I would have asked. They just told her that they will be giving her a small dose and Benadryl first.
I get iron infusions. Well- I’m currently on hiatus (to be started again at any time). I get venofer.
I didn’t have any reactions (and I do have fairly significant allergies) and the only “side effect” is that I had energy for the first time in forever about a day or two later.
I receive them weekly for about 6 or 8 weeks and then I get a few weeks off to see if it’s holding or not. That was just my experience though- I’m sure that varies by person.
I have gone through several rounds in the last two years.
This is the best thing I have every done for myself. I can’t say enough good things about the experience. I am also a person with significant allergies and never had a problem.
She will get the Benadryl and it will be fine.
I’m a very tiny person and the needle used is large, so I found the experience painful and had significant bruising, but I would 100% do it again. It was absolutely life-changing in more ways than I can count. I can’t tell you what it was like to go through this winter without wanting to die from the cold because I can actually be warm now, which has not been the case in a decade. To be able to walk, exercise, enjoy life without my heart pounding and becoming so dizzy I could barely stand.
If your daughter doesn’t do this, what is Plan B for her anemia? she certainly can’t continue to live with that.
@zoosermom and @romanigypsyeyes Thank you for much for your responses. There is no Plan B. I’m just being honest when I admit I am nervous about her receiving it, though. Right before Christmas, a 19 yr old from our parish died from a reaction from an infusion (not iron) she received for Crohn’s. I can’t think of a way to actually type what I am thinking. It was so unexpected and tragic.
I’m sure dd will be fine, but I do find it reassuring to know that you both have a history of significant allergies and haven’t experienced any problems. Dd said she didn’t discuss allergies with them. She is going in for it in a couple of hours.
I totally get why you are anxious. This is your baby. Who among us wouldn’t be?
The young person with Crohn’s likely had totally different issues overall and it’s hard to know what the actual cause of death was. Obviously, I don’t know why your daughter is dealing with this, but anemia at the level to require infusion is no joke, so something has to be done.
I remember reading before my first round about the allergy risk and it was very scary, but I don’t think it’s a statistically large risk. My infusions were done in a medical facility with great staffing and the hematologist sat with me the first time, so you can definitely check with the facility to see who is there and what their procedures are in the event of an allergic reaction - that would either mitigate your concerns or make you want to find another facility. Also, if possible, it would be nice to sit with her or have someone else do so because it’s a boring and not very pleasant experience. It’s different everywhere, but here the infusions are given at chemotherapy facilities, and those aren’t easy places to be.
My only advice to you (please pardon me) is to take the anemia very seriously and be aware (and maybe make your daughter and family members) aware that she is very sick. Anemia is one of those things that’s often thought of as a female problem and minimized as a result. It is a life-alteringly debilitating condition that causes utterly miserable physical, mental, and emotional symptoms. But as I said, the infusions gave me back my life. I haven’t had to go back for 4 months and counting. I am so grateful and wish this had been suggested to me earlier.
From what I can find on-line, iron infusions today have fewer side effects than those from the past (different formulations and salts). Mostly very well tolerated with a LOT less allergic reactions than in the past.
Infusions sound like a big deal but they’re really not. My son has gotten them every two months for ten years. Patients are constantly monitored, a nurse is either in the room or in right outside, doctors are available. In all that time we have never had an issue; he doesn’t even get a bruise from the IV. I guess infusions used to be only for dire circumstances but now they’re a routine way of getting patients what they need.
The thing they’re monitoring for is allergic reactions so you don’t have to worry about anybody being surprised by a reaction.
Here is hoping that it “takes” and makes her feel better!