Tell me about your iron infusions, please!
May 10, 2016 6:29 PM Subscribe
I have low ferritin. I just saw a hemotologist and he wants to try IV iron infusions. Yay! But also, eek? Reassure me with your anecdata!
Thank you all for your tips on getting my ferritin up.
My ferritin has gone up a little bit since last summer (from 4.6 to 12) with dietary iron/infrequent iron supplements, but my serum iron and iron saturation keep dropping (61 and 18, respectively, in March, and even lower today, though I don't have those numbers on me).
The hemotologist thought it was worth trying an IV infusion, both because I don't seem to tolerate oral iron supplements too well and because my husband and I would like to get pregnant relatively soon. The hemotologist specifically ordered a 500 mg of low molecular weight iron dextran with a test dose first.
So, questions for those of you who have had iron infusions.
1. Did you have any adverse reactions during the infusion?
2. What about side effects later on? (Fatigue, muscle aches, fevers...?)
3. How tired/wiped out should I expect to be for the few days after the infusion even if I don't have a reaction?
4. I have low blood pressure. Do any of you have low blood pressure? Did your infusion make your low blood pressure even lower?
5. Oral iron makes me feel icky (sort of like I have the flu, with extreme fatigue and general not-feeling-good-ness). Is getting a ton of IV iron also likely to make me feel icky?
6. Will I likely be okay to travel with family for a (driving-heavy but otherwise not too strenuous) vacation about a week and a half after the infusion? Or would it be better to wait until after the vacation to get the infusion?
7. Anything you wish you'd known before getting your infusion? Anything you'd do differently to prepare, or during the infusion, or afterwards?
I know MMMV, YANMD - but hearing about your experiences helps me feel better! Thank you!
Thank you all for your tips on getting my ferritin up.
My ferritin has gone up a little bit since last summer (from 4.6 to 12) with dietary iron/infrequent iron supplements, but my serum iron and iron saturation keep dropping (61 and 18, respectively, in March, and even lower today, though I don't have those numbers on me).
The hemotologist thought it was worth trying an IV infusion, both because I don't seem to tolerate oral iron supplements too well and because my husband and I would like to get pregnant relatively soon. The hemotologist specifically ordered a 500 mg of low molecular weight iron dextran with a test dose first.
So, questions for those of you who have had iron infusions.
1. Did you have any adverse reactions during the infusion?
2. What about side effects later on? (Fatigue, muscle aches, fevers...?)
3. How tired/wiped out should I expect to be for the few days after the infusion even if I don't have a reaction?
4. I have low blood pressure. Do any of you have low blood pressure? Did your infusion make your low blood pressure even lower?
5. Oral iron makes me feel icky (sort of like I have the flu, with extreme fatigue and general not-feeling-good-ness). Is getting a ton of IV iron also likely to make me feel icky?
6. Will I likely be okay to travel with family for a (driving-heavy but otherwise not too strenuous) vacation about a week and a half after the infusion? Or would it be better to wait until after the vacation to get the infusion?
7. Anything you wish you'd known before getting your infusion? Anything you'd do differently to prepare, or during the infusion, or afterwards?
I know MMMV, YANMD - but hearing about your experiences helps me feel better! Thank you!
Of the half-dozen friends who've done this (getting old sucks), I think the biggest issue was the time, which seems to run several hours plus intake and transit time. The infusion process itself was unremarkable, it was just logistics that were a hassle.
posted by Lyn Never at 6:57 PM on May 10, 2016 [1 favorite]
posted by Lyn Never at 6:57 PM on May 10, 2016 [1 favorite]
My iron infusion was the best thing ever!
1. No adverse effects
2. No side effects later on ( I was tired but that was due to the sedation I'd had for an endoscopy first - I had my infusion when when I was in the recovery room. I'd been sedated before and sedation + infusion was no different to sedation alone.)
3. Was as wiped out as I expected due to sedation, really don't think infusion changed that.
4. I have low blood pressure, iron didn't change it one way or the other
5.I loathe oral iron. The infusion was like nothing at all.
6. I don't drive so won't answer this. But I flew on vacation in that time frame and was fine.
7. OMG how did I not know this was a thing! Regret for not knowing I could've improved my life sooner. I was super anemic and breathless just existing and then about 10 days after the infusion I suddenly had energy and it was amazing.
posted by kitten magic at 6:58 PM on May 10, 2016 [1 favorite]
1. No adverse effects
2. No side effects later on ( I was tired but that was due to the sedation I'd had for an endoscopy first - I had my infusion when when I was in the recovery room. I'd been sedated before and sedation + infusion was no different to sedation alone.)
3. Was as wiped out as I expected due to sedation, really don't think infusion changed that.
4. I have low blood pressure, iron didn't change it one way or the other
5.I loathe oral iron. The infusion was like nothing at all.
6. I don't drive so won't answer this. But I flew on vacation in that time frame and was fine.
7. OMG how did I not know this was a thing! Regret for not knowing I could've improved my life sooner. I was super anemic and breathless just existing and then about 10 days after the infusion I suddenly had energy and it was amazing.
posted by kitten magic at 6:58 PM on May 10, 2016 [1 favorite]
My mother is 74 yo Type 2 diabetic with a dodgy heart on a pacemaker & bad kidneys oh & has consistently low blood pressure. She had this done. She had no side effects walked home from the hospital afterwards (she lives in a small country town so it's only several blocks away) pausing for a chat & a coffee on the way. The iron had no effect on her blood pressure. She got way more side effects from the tablets & they didn't help anyway.
It did however take maybe a week before she felt the full benefits, which she found a little disappointing as she expected a sudden burst of energy pretty much the second they finished. She was so stoked with how well it all went that she wished she'd done it earlier.
Quick IM to my mother & her reply was it was a bit like donating blood, she got that same dizzy, queasy sweaty feeling you get while it was going on, but they let her sit until it passed. She said thinking about it she felt quiet for a few days afterwards, but she was feeling bad anyway which is why they did it so she's not sure if it's related.
Your vacation time hits at just the right point to be over any side effects & at maximum energy levels.
posted by wwax at 7:18 PM on May 10, 2016 [1 favorite]
It did however take maybe a week before she felt the full benefits, which she found a little disappointing as she expected a sudden burst of energy pretty much the second they finished. She was so stoked with how well it all went that she wished she'd done it earlier.
Quick IM to my mother & her reply was it was a bit like donating blood, she got that same dizzy, queasy sweaty feeling you get while it was going on, but they let her sit until it passed. She said thinking about it she felt quiet for a few days afterwards, but she was feeling bad anyway which is why they did it so she's not sure if it's related.
Your vacation time hits at just the right point to be over any side effects & at maximum energy levels.
posted by wwax at 7:18 PM on May 10, 2016 [1 favorite]
I had one adverse reaction (besides boredom) during one of my sessions. I started seeing a migraine aura. I alerted the nurses and they called the attending and everyone fussed over me for five minutes and then they said 'eh' and finished the transfusion. I had no pain, just the optical artifact in my vision field.
One unpleasant surprise was the price tag. Even though they were 'covered' by my insurance, infusions fell into a special category, and I ended up paying $500 per session. So you might want to check that out in advance.
posted by bq at 7:47 PM on May 10, 2016 [1 favorite]
One unpleasant surprise was the price tag. Even though they were 'covered' by my insurance, infusions fell into a special category, and I ended up paying $500 per session. So you might want to check that out in advance.
posted by bq at 7:47 PM on May 10, 2016 [1 favorite]
No problems during the infusion. Just chill out and let it drip. I wore sunglasses and took a nap under a warming blanket.
It's nothing like oral iron (shudder). For most sessions I got joint pain, muscle aches and fatigue 1-3 days after. It's manageable. A week in you should feel really energized. Go on that vacation!
Totally worth it. For the first time in a decade, I have a ferritin count above 11... and I've maintained a respectable level for 9 months with no supplements. My hands are warm! My exclamation points aren't ironic!
posted by fritillary at 8:50 PM on May 10, 2016 [4 favorites]
It's nothing like oral iron (shudder). For most sessions I got joint pain, muscle aches and fatigue 1-3 days after. It's manageable. A week in you should feel really energized. Go on that vacation!
Totally worth it. For the first time in a decade, I have a ferritin count above 11... and I've maintained a respectable level for 9 months with no supplements. My hands are warm! My exclamation points aren't ironic!
posted by fritillary at 8:50 PM on May 10, 2016 [4 favorites]
Of note, many iron infusions consist of iron compounded with a carbohydrate like dextrose (iron dextran or sodium ferric gluconate for example), so I did also notice a funny sugary metallic taste in my mouth with my infusions. I sipped on apple juice during the infusions and then it was a non-issue. I drove myself home from each six-hour infusion without issue - mine took so long each time because I needed large amounts of iron, so you really ought to be fine a week after an infusion even if you get a monster slug of iron.
I also agree, it was amazing to have energy again after the two months of those weekly iron infusions. I'd do it again in a heartbeat. At a certain point in iron deficiency, you literally cannot absorb enough iron through your GI tract to make enough of a difference, so this is the way to go.
posted by vetala at 10:04 PM on May 10, 2016 [1 favorite]
I also agree, it was amazing to have energy again after the two months of those weekly iron infusions. I'd do it again in a heartbeat. At a certain point in iron deficiency, you literally cannot absorb enough iron through your GI tract to make enough of a difference, so this is the way to go.
posted by vetala at 10:04 PM on May 10, 2016 [1 favorite]
My first infusion I felt a little queasy initially, but he had turned the drip rate up pretty high, and when I brought up that I was feeling odd he bumped it down and gave me a glass of water and I was fine from then on.
I felt a difference within 24 hours and a major difference within a week.
I returned to normal life immediately, drove myself home, all that, and had no issues whatsoever. Don't be worried!
posted by olinerd at 1:50 AM on May 11, 2016 [1 favorite]
I felt a difference within 24 hours and a major difference within a week.
I returned to normal life immediately, drove myself home, all that, and had no issues whatsoever. Don't be worried!
posted by olinerd at 1:50 AM on May 11, 2016 [1 favorite]
Drink lots of fluids on the day you are having it put it. Do some mild exercise like a brisk walk soon before. Keep your forearms and hands warm. All these things will plump up your veins and make the process of cannulating your vein for the infusion much easier.
posted by Stephanie_Says at 5:43 AM on May 11, 2016 [1 favorite]
posted by Stephanie_Says at 5:43 AM on May 11, 2016 [1 favorite]
I had these for months because oral iron made me so incredibly sick to my stomach. The only side effect was turning splotchy and itchy, which most things do for me so they had me take some kind of i.v. benadryl before the iron. That knocked me out every time. Gradually it got to where I could just take allergy medicine ahead of time and no itching. My energy levels were great and gradually wore down before the next treatment times. My insurance covered it so I just had a $50 copay each time and get check ups every few months.
posted by beanytacos at 12:04 PM on May 11, 2016 [1 favorite]
posted by beanytacos at 12:04 PM on May 11, 2016 [1 favorite]
Response by poster: Thank you! I'm not going to mark any as best answer because they're all great - I really appreciate it. I'm headed in for my infusion in about an hour and am now much more happy/excited about it than before!
posted by bananacabana at 9:31 AM on May 12, 2016
posted by bananacabana at 9:31 AM on May 12, 2016
Iron infusions are amazing!
I ran my best 10 mile run EVER the day after mine.
posted by hrj at 5:34 PM on May 12, 2016 [1 favorite]
I ran my best 10 mile run EVER the day after mine.
posted by hrj at 5:34 PM on May 12, 2016 [1 favorite]
Response by poster: Just popping back one more time to say that the infusion went great yesterday. No reactions, no side effects, feeling just fine today, and very happy I went for it. Thank you all for your advice and encouragement! You all are the best!
posted by bananacabana at 11:35 AM on May 13, 2016 [2 favorites]
posted by bananacabana at 11:35 AM on May 13, 2016 [2 favorites]
This thread is closed to new comments.
Based on my experience I would have no problem traveling a week and a half after the infusion, but that's a better question to pose to your doctor who has more experience with the breadth of post-infusion experiences and their relative likelihoods.
posted by telegraph at 6:38 PM on May 10, 2016 [2 favorites]