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View Full Version : Anyone with severe anemia having to receive iron infusions?


happylittlefamily
12-05-2009, 08:58 PM
I'm now having to receive IV iron infusions for my severe anemia issues and I was wondering if any other mamas are going through this. I had my first infusion the other day and I'm so exhausted and in a lot of pain. Is that normal? I thought I'd feel better, but then read it is normal for it to take 3 wks to feel a difference. I am scheduled to have 8 weekly IV iron infusions at this point with bloodwork being done by my hematologist at the halfway mark. What side effects have you experienced and are you at all concerned about the high risks? I keep reading about sudden death allergic reactions even after several successful infusions! I'm too tired to dig too deep into the research right now though. I am praying this is going to help me get back to a healthy point!

Newton
12-05-2009, 11:43 PM
Just wanted to say hugs. I am always anemic since I have a bleeding disorder , I have had very low iron, for iron shots, but never the infusions. I know it feels crummy as low as I've been, can't imagine how you must be feeling. I hope this is the answer and that you're feeling better soon!

garness
12-06-2009, 12:03 AM
I am a nurse who administers this to patients. Just so you know, most tolerate it really well. Very few can have an allergic reaction, I have never seen anything severe though. It will take several weeks for you to feel an improvement in your symptoms. Keep it up. Just know that your doctor wouldn't recommend this if he/she didn't feel you really needed it. PM me if you have a question.

kimb96
12-06-2009, 02:02 AM
I've been dealing with anemia for 8 months now. I've had blood transfusions, iron infusions, and am now on oral iron supplements. The iron insfusions were WAY easier than the oral supplements have been. My stomach hurts all the freaking time from the high dose iron supplements. If I had the choice, I'd take the infusions again in a minute.

happylittlefamily
12-06-2009, 02:00 PM
Could you tell me how long the side effects of the infusions last after each treatment? I'm still very achy and have a horrible headache and actually feel more exhausted now than I did on Wednesday when I had the first infusion! I have my next infusion this upcoming Wednesday and I'm a little worried about how long after that infusion I'll feel bad. Hubby works 14hr days, so it's just me caring for the 4 little ones and our 10 month old still isn't sleeping through the night, so it's not a great mix to not be sleeping day or night and feeling this way. My legs/bones just ache so much!

As for oral supplements, I've been on them for years. I no longer absorb iron or b12 or pretty much any vitamin or mineral from food anymore, so I have to get them through supplements. Originally, I was on just OTC iron, but then had to go on prescription iron. I have to give myself monthly shots of B12 because I can't absorb that well in supplement form anymore. Just before I had our last baby, the anemia got really, really bad (thanks to stupid OBs who don't listen to patients) and my hematocrit got down to 6.1! Right now my saturation levels are 3%.

I read that the side effects can get worse with each infusion. Is that true? I'm getting the Venofer (sp?) infusions which I have read have the least side effects and are actually pretty quick going in. I'm just struggling with a lot of feeling disoriented and out of it since having it done but I also started another new medication the same day, so not sure if it's the med or the infusion.

happylittlefamily
12-06-2009, 02:03 PM
I've been dealing with anemia for 8 months now. I've had blood transfusions, iron infusions, and am now on oral iron supplements. The iron insfusions were WAY easier than the oral supplements have been. My stomach hurts all the freaking time from the high dose iron supplements. If I had the choice, I'd take the infusions again in a minute.

Make sure you are taking your iron with Vitamin C (oj or something like that) and not anywhere within 2 hrs of calcium because the calcium won't get absorbed. Just an FYI. The Vitamin C helps aid in the absorption of the iron and definitely do not take iron on an empty stomach! And a stool softener will become your new best friend:) LOL

kimb96
12-06-2009, 02:08 PM
I had no real side effects from the venofer. I'm also a nurse and have never had a patient complain of any noticeable side effects from venofer. I don't think it's what is causing you to feel bad. What other new med did you start that day?

kimb96
12-06-2009, 02:12 PM
Make sure you are taking your iron with Vitamin C (oj or something like that) and not anywhere within 2 hrs of calcium because the calcium won't get absorbed. Just an FYI. The Vitamin C helps aid in the absorption of the iron and definitely do not take iron on an empty stomach! And a stool softener will become your new best friend:) LOL

I just started the vit c supplements a couple of weeks ago. I live in thailand and my doctor switched me to a thai brand of iron supplement which is much easier than the niferex I was on in the states. I haven't needed the stool softeners. The niferex turned my bowels to cement and made me nauseous all the time. The thai brand has definetely been the lesser of the two evils.

Hbug
12-06-2009, 02:33 PM
Hugs mama. I haven't experienced it personally, but my baby girl had to get iron infusions after birth.

CarrieMF
12-06-2009, 02:41 PM
I have to give myself monthly shots of B12 because I can't absorb that well in supplement form anymore.

Have you considered increasing how often you get your b12 shots? I get mine done every 2 weeks, but there are people who get it more often.

eileenAKAmommy
12-06-2009, 03:02 PM
Just reading this made me tear up!

I was getting iron infusions twice a week (I can't now, no insurance).

I had an allergic reaction to (iron dextran) and it was the scarriest thing ever. Chest pain, problems breathing, ect.

I had to have demirol, benadryl... and there was something else, with the infusions.

The whole day would be shot after it was done. I would have painful joints for awhile too (3-ish days).

happylittlefamily
12-06-2009, 03:39 PM
That's kind of how I feel. Like my body just aches all over, especially in my legs. I'm actually starting to feel a little better with the achiness today, but I still have the bad headache. I just started Topamax for migraines, so I don't think that would cause headaches and body pain. LOL At least I doubt it. LOL

happylittlefamily
12-06-2009, 03:43 PM
How many infusions did it take to have your allergic reaction? I did read and my hematologist did say that the venofer is less likely to cause an allergic reaction than the other types available. I'll have to have iron infusions most likely for the rest of my life, so I'm hoping they work. I'm just not super thrilled right now after just feeling so yucky 3 days later. Hubby works 3 days on, 3 days off, so I'm going to have to schedule them on the first day of his 3 days off just to make sure I can deal with the side effects. Unfortunately, this is going to cause me to close my WAHM business for a while:( But hopefully, I'll finally feel better than I have in years once I'm done with these 8 wks.

happylittlefamily
12-06-2009, 03:45 PM
Did you guys bruise pretty bad when you had your's done? I still have a huge bruise where the needle was placed and my right hand was quite a bit more swollen than my left hand for 2 days after. I mean, I'll deal with it for 8 wks if it means I'll be healthier, but I just wasn't expecting the side effects. I went in for blood results and he sent me immediately for the iron infusion, so I had no time to research or prepare...

garness
12-06-2009, 06:18 PM
iron dextran has a higher risk for allergic reaction than venofer. Venofer doesn't have a high amount of side effects, so I am wondering if your problems are more related to your medical condition rather than the venofer itself. By the time people are getting the infusion, many times they feel terrible due to living with such low levels of iron and severe anemia etc... That being said the venofer is irriating to the veins, so expect some buring type pain during the infusion and possible bruise at the IV site. Make sure the nurse gets a really good IV and you are getting the infusion over an hour or more. Heat to the IV site (hot pack) can help.

garness
12-06-2009, 06:23 PM
I looked up the side effects of the drug your taking, sounds like it might be causing the headache and the "foggy" feeling. The venofer may be causing the joint pain and headache as well. Keep it up and see how you feel in a few weeks.

happylittlefamily
12-06-2009, 06:41 PM
iron dextran has a higher risk for allergic reaction than venofer. Venofer doesn't have a high amount of side effects, so I am wondering if your problems are more related to your medical condition rather than the venofer itself. By the time people are getting the infusion, many times they feel terrible due to living with such low levels of iron and severe anemia etc... That being said the venofer is irriating to the veins, so expect some buring type pain during the infusion and possible bruise at the IV site. Make sure the nurse gets a really good IV and you are getting the infusion over an hour or more. Heat to the IV site (hot pack) can help.

Possible bruise? How about a quarter of my forearm! LOL Oh well. What choice do I have. I have read both that the side effects get worse with each infusion and remain the same with each infusion, so I'm hoping I just have a couple of days of pain and that is it. And I'm especially hoping that after 2-3 more infusions, there will be an obvious benefit to having the infusions but yeah, my anemia is pretty bad, so it may take a while.

mamaholdyou
12-06-2009, 08:25 PM
The best trick I was taught for starting IVs on people with difficult veins was to fill a rubber glove with hot water and have the patient hold it in their hand for a while before trying to stick. It makes the veins pop out so less digging and less bruising.

happylittlefamily
12-06-2009, 10:01 PM
I have veins galore, so that's not the problem. It's just with the anemia, I bruise like a son of a gun anyway if I bump into anything, so just having the IV started causes a huge bruise. I couldn't spank my kids if I wanted to because the palm of my hands would bruise from doing so! LOL I know I've had some sweet nurses who will lay a heating pad over my arm before putting in an IV, but really, it's not necessary for me because I'm a very vein-y person. But hopefully, once the infusions are done and my blood supply is better, I won't bruise so badly. I am going to talk to the hematologist about doing further testing to see if there is another underlying reason for the anemia since I've been mildly anemic since I was a baby. I mean, what would cause a baby to be anemic when all other siblings (I had 7 other siblings) weren't? I was always a very confused and disoriented child, so wonder if maybe that had something to do with the anemia. I know my mom well enough to know that they told her I was slightly anemic and she surely did nothing about it. I never was on vitamins or was even told about it until yesterday!! My parents were poor and had 8 children, so I'm fairly certain it was never a concern or was further looked into. But I just wonder what would cause a little kid to be anemic if it's not food related. I mean, it most likely couldn't be food related if my siblings weren't anemic considering we ate the same foods. Hmmm. It's kind of weird. Oh well. I'm exhausted and heading to bed. I gave myself my b12 shot tonight, which usually gives me a headache the first day, so hoping to sleep through that lovely ordeal:) LOL If only the baby will let that happen!! Thank you all so much for you suggestions and advice. This is quite scary and new to me, so I appreciate hearing from others who are familiar with it.

kimb96
12-06-2009, 10:09 PM
I have veins galore, so that's not the problem. It's just with the anemia, I bruise like a son of a gun anyway if I bump into anything, so just having the IV started causes a huge bruise. I couldn't spank my kids if I wanted to because the palm of my hands would bruise from doing so! LOL I know I've had some sweet nurses who will lay a heating pad over my arm before putting in an IV, but really, it's not necessary for me because I'm a very vein-y person. But hopefully, once the infusions are done and my blood supply is better, I won't bruise so badly. I am going to talk to the hematologist about doing further testing to see if there is another underlying reason for the anemia since I've been mildly anemic since I was a baby. I mean, what would cause a baby to be anemic when all other siblings (I had 7 other siblings) weren't? I was always a very confused and disoriented child, so wonder if maybe that had something to do with the anemia. I know my mom well enough to know that they told her I was slightly anemic and she surely did nothing about it. I never was on vitamins or was even told about it until yesterday!! My parents were poor and had 8 children, so I'm fairly certain it was never a concern or was further looked into. But I just wonder what would cause a little kid to be anemic if it's not food related. I mean, it most likely couldn't be food related if my siblings weren't anemic considering we ate the same foods. Hmmm. It's kind of weird. Oh well. I'm exhausted and heading to bed. I gave myself my b12 shot tonight, which usually gives me a headache the first day, so hoping to sleep through that lovely ordeal:) LOL If only the baby will let that happen!! Thank you all so much for you suggestions and advice. This is quite scary and new to me, so I appreciate hearing from others who are familiar with it.

So they never isolated the cause of your anemia? I never had it until this past year. I ended up in the hospital with a hemoglobin of 4. They thought it was my endometriosis but my blood count is still up and down 4 months after starting the pill. I'm terrified this is going to go on indefinetely.

happylittlefamily
12-07-2009, 09:18 AM
No, it has always been assumed it was because I had gastric bypass surgery 5 years ago, but I was mildly anemic even before that. But my doctors always said it wasn't uncommon for women to be mildly anemic due to menstruation, even though I rarely had periods. Anyway, the other day when I talked to my mom and she mentioned that I have always tested anemic even as a baby, that kind of bothered me because I don't think it's ever normal for a baby to be anemic, especially if the 7 other siblings weren't. Anyway, now I KNOW that it's pretty severe now because I don't absorb any iron or b12 or really any vitamins/minerals from food anymore, but to know that there may be an additional underlying condition bothers me. I'll have to see if my doctor thinks it's important enough to look into. Maybe not because I'm sure the outcome, regardless, will be the same treatment. We'll see. Obviously, making a decision to have such a drastic surgery indicates I was aware and willing to accept the potential risks that came along with it, but if there are additional reasons causing it that may need different treatments, then I think that is important. All I know is my blood work always comes back pretty normal until doctors send it for further testing. Like my anemia. It came back mild to all of the doctors who did just a baseline test. But when my hematologist did the further testing, that's when he saw the saturation and everything else was crucially low.

mommyfrog
12-07-2009, 10:39 AM
I had to with my last baby. After the first one I felt terrible but it seemed t get better each time and by the end I had more energy than I had had since I was a kid. I should probably still be getting them every so often , but I don't have insurance so I don't even get my iron checked. My blood iron was at the lowish end of normal because I was on oral iron. My stored iron was really low because I wasn't absorbing it correctly. I'm sure that didn't go away just because I'm not preggo anymore. I've been having more and more days where I just feel like my muscles don't have any power to move. It sucks.

CarrieMF
12-07-2009, 02:42 PM
Anyway, now I KNOW that it's pretty severe now because I don't absorb any iron or b12 or really any vitamins/minerals from food anymore, but to know that there may be an additional underlying condition bothers me.

Actually not absorbing B12 is a CAUSE of anemia.

I'd get the dr to look into finding the cause. The treatment can change depending on the cause.