For those of you who've had Infed infusions, how many mgs do you get before you start to feel better? My doctor wants to start off with 800 mg, which takes about two hours, but says I will probably need at least one more because that is a small ammount. I know the Venofer takes about five or six infusions to work but I wasn't sure about the amount of Infed you get. It depneds on how deficient you are?

HI.

I'm new to all of this as well. I am getting eight infusions (2 this week, 3 next and 3 the next). I am also getting 800 mg. Today is my second treatment.

I am nervous, but ready to be finished!

Best of luck to you.

I usually have 1,200mgs of InFeD. I begin to start feeling some improvement after a week. I will be having another in two weeks. It will be over two days. The last time they did it all in one long session (6 Hrs.) I broke out in hives on the way home.

Everyone said "feel better" after the infusion. Why I'm feeling worse after that.... A lot more of light-headed, dizziness, SOB, infection and pain every where? :confused: I can't feel my heart beating, it woke me up. Wait for a few second that it comes. The iron infusion was passed 4 weeks. It is really what I don't want and isn't what I'm waiting for....... very disappointed!

The doctors have all said to me "Aren't you fatigued? How are you getting out of bed?" I was like, "I'm 40 years old, married to a 32 year old, have two boys, a Jack Russell, a house, a job... three baseball teams - heck, I thought I was supposed to feel this tired."

Today I am feeling really exhausted. I think I am more tired today than before I even started the infusions. Is this normal?

My husband says that I'm just trying to get out of going today, but that's not it! I have an infusion today, Thursday and Friday.

What do you guys do after your infusions? Rest, get sick, keep going, feel better?

I am so happy to have found you ALL!!!

Hi MMR0719,
I was wondering what your iron levels were to start you on such an aggressive iron therapy? :)

Hi.

I don't have my initial numbers, but after 8 weeks of iron pills (325 mg/3 times a day)... my iron was 16 L. I was at 4% saturation level.

Started with pain in lower right abdomen, found a mass, wanted to get it out right away, did blood work, found blood issues, won't remove mass until blood is good enough for surgery... and there we sit...

Is my therapy considered aggressive? It is all new to me...

The doctor said that I basically have no iron in my blood or in my liver. I am down a pint of blood inside my body, as well.

What is the norm?

Hi again!
I do not know the norm either, I went to DR. today, he said my iron levels are some of the lowest he has seen, and the person still functioning outside the ER! Anyway, he is starting me on infusions, but I think only 1 a week, for 8 weeks. I am wondering if I need more aggressive treatment like yours. My total iron is 9, iron sat is 2, ferritin is less than 1, also low b12. Maybe because of your mass, your treatment is more critical. I am just dealing with absorption issues.
I am thinking of you, and really hoping that you get to feeling better real quick! :wave:

Thanks so much! I hope you feel better, too!

I am leaving work now for my infusion! Here's to no new reactions! ;-)

Have a great night.

On February 22 I had a total infusion of 2,225 mg of iron Dextran that took 6 hours. I had no bad reactions at all. It took me over 3 weeks to start feeling some life, but now I'm feeling tired all of the time again. Not quite as severe but not like I was. I go back to the hematologist on May 5th so we'll see where I'm at then.
Meanwhile I went to my OB/GYN and she wants to do an endometrial ablation to stop my periods, so I will have no reason to lose any iron that way.

Has anyone had more iron after a total infusion? My anemia is only due to absorption issues from weight loss surgery 5 years ago.

Hi Chicky Chat!
I too, have my problems due to malabsorption, due to gastric bypass five years ago. So you only had one infusion? I do not know exactly how much I am getting infused, but he said it would take about 5 hours. He didn't say specifically, but I think I am supposed to have 8 infusions in all. He did say, that this will be my lifelong therapy, as tests show, I do not absorb ANY iron or b12 in my GI tract. I am starting the b12 injections as well. Even with this, I am still very glad to have had the bypass, it probably saved my life. I hope you feel better fast.

I, too, am a Gastric Bypass member! I would do it again in a heartbeat! I feel like, unfortunately, my current issues are related to this ovarian mass and the bleeding from that ON TOP of the gastric issues. I hate to blame something that was so good to me ;-)

My B-12 is fine for now, but I am starting back on my shots. I did them the first year, but then became a slacker!

I got nauseous yesterday... but feel good this morning. I don't know if it the stress of having the infusions or the actual medicine that makes me nauseous... maybe the inFed or the steriods? Who knows....

Hi Chicky Chat!
I too, have my problems due to malabsorption, due to gastric bypass five years ago. So you only had one infusion? I do not know exactly how much I am getting infused, but he said it would take about 5 hours. He didn't say specifically, but I think I am supposed to have 8 infusions in all. He did say, that this will be my lifelong therapy, as tests show, I do not absorb ANY iron or b12 in my GI tract. I am starting the b12 injections as well. Even with this, I am still very glad to have had the bypass, it probably saved my life. I hope you feel better fast.
I was feeling ok until i had a period, now i'm dragging again! I have one more before I go in on may 5th and I will probably be a zombie by then!
I'm not taking a 200mg b12 injection weekly. I hope I get more iron!!

I, too, am a Gastric Bypass member! I would do it again in a heartbeat!.
I'm another Gastric bypass member! My Hematologist says that she is seeing more and more gastric bypass patients coming in for infusions. We just end up needing infusions....I'll be having another next week. I started having low iron issues around two years post-Op. I am over five years out now.

I have to admit that I was a terrible post-op patient. I got so caught up in my new life that I didn't take great MEDICAL care of myself.

I did do my follow up visits, but only for the first year. my doctor changed specialities and I stopped going. my primary care doc ordered blood work several times, but I felt great, had a busy life and blew it off. I wonder how much of my current issue could have been avoided if I did right? guess I will never know.

I go for another infusion this afternoon. I am at least getting the routine down. one more tomorrow, then three next week.

After that, they will check my blood to see if I am okay foe surgery... if yes, we operate... if no, most likely we do blood tranfusion (ick)!

Feel good today!

Does everyone here get benadryl and decadron before they put the iron in? They give me a bag of each before I get the iron... normal for you all?

Finished infusion around 5:30 p.m. and had massive leg cramps for the next two hours... is this a side effect anyone else has had or am I just old and sat in the same place for too long? :-)

Hi
Well I go for my first infusion this am, have to drive for an hour to get there, was everyone able to drive after their infusions? Starting to get nervous! I sorry to hear about your leg cramps, I get those without the infusions! Still, I have to think positive, my iron is so low, things can only get better, so I am ok with whatever discomfort may come, hoping things improve down the road. So Iron infusion...here I come...

Have a pain free day!:)

first of all, good luck this morning. I know you will do great!!!

I have driven home twice... the only issue was that I was very tired... I guess from the bag of benadryl they give me before the steriods and iron???

my leg cramps only lasted a few hours and were more annoying than anything b/c I was trying to keep score for a baseball game and couldn't sit still!

I have another infusion in 15 minutes...

here's to everyone having a good day!

Finished infusion around 5:30 p.m. and had massive leg cramps for the next two hours... is this a side effect anyone else has had ? :-)
I had minor cramps through the first night after my second infusion. I read somewhere that this is a normal side effect. You can also have bone pain. These side effects are temporary. HTH
Rita

thanks, ritah! that does help... normal reactions I can handle. it is just learning what the 'normal' reactions can be!

I am sitting in the cahir as we speak getting an infusion!