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Ok I was just on the Venofer website and the "Important Safety Information" has me seriously nervous about my 1st infusion this Wed. Here are my labs-

Hemoglobin- [B]9.8[/B] (11.2-15.7)
Ferritin- [B]3.8[/B] (13-150)
Iron- [B]22[/B] (37-145)
Hematocrit- [B]32[/B] (34-45)
% Iron saturation- [B]6[/B] (15-50)

I have been dealing with this for a year or more, was taking Iron supplements but had no improvement, so the Hematologist ran an "Iron Absorption test" which showed I'm not absorbing. Maybe because I am on Metformin, not sure.

So anyways, I am scheduled for a series of FIVE Venofer IV infusions and am SCARED to death but not sure what else to do at this point. Five seems like a lot and I am worried about side effects, I can't afford to feel worse than I already do. Any thoughts or advice?
I just finished my 3rd infusion and I have to tell you, reading the horror stories online will only make you worry. I also have anemia and am currently 7 months pregnant. I have been anemic for almost 3 years. Its nothing to worry about. The ONLY side effect I got (besides being extremely tired from the benadryl) was mild body aches 2-3 days after each infusion. I am finally starting to see a slight boost in energy. I go at the end of the week to re-test to see if my levels have increased. My doctor said that iron infusions are very common, and that venefor rarely causes problems. Stressing over it will not help. When you go, take a good book or laptop or tablet to entertain yourself because you'll be there a few hours, and most likely you'll sleep most of it. Hang in there, ITS NOT BAD AT ALL.
Thank you for your reply, it's encouraging to hear you did so well and are getting a boost of energy! Goodness knows 3rd trimester is exhausting as it is. (i have 6 children. :)) At this point I'm not sure if Benadryl was ordered for me so I picked up some liquid to bring along and a book is all packed.

Also are you allowed to get up and go to the bathroom during the infusion? If not I will avoid coffee in the morning. lol



[QUOTE=damaz3s;5168288]I just finished my 3rd infusion and I have to tell you, reading the horror stories online will only make you worry. I also have anemia and am currently 7 months pregnant. I have been anemic for almost 3 years. Its nothing to worry about. The ONLY side effect I got (besides being extremely tired from the benadryl) was mild body aches 2-3 days after each infusion. I am finally starting to see a slight boost in energy. I go at the end of the week to re-test to see if my levels have increased. My doctor said that iron infusions are very common, and that venefor rarely causes problems. Stressing over it will not help. When you go, take a good book or laptop or tablet to entertain yourself because you'll be there a few hours, and most likely you'll sleep most of it. Hang in there, ITS NOT BAD AT ALL.[/QUOTE]
I am also very happy to have found this topic!

I just found out from my Dr. that my iron levels are ridiculously low. Per the lab results:

Iron: 12 (41-182)
TIBC: 387 (300-450)
Iron % Saturation: 3 (20-55)

My CBC also came back with low counts for the following:

Hemoglobin: 9.2 (12.0-15.0)
Hematocrit: 32.5 (33.2-41.1)
MCV: 71.3 (79.3-94.8)
MCH: 20.2 (26.8-33.2)
MCHC: 28.3 (33.5-37.0)

So I have to have VEnofer Infusion 300mg daily x 3 days, starting on 5/20. I am a HUGE medical weenie, so I have already managed to freak myself out reading about the incidents of bad side effects and allergic reactions. (Sometimes I really hate the internet for that!!)

I have to say I'm a little frustrated today since I wasn't given a lot of information about what to expect, how to prep, any restrictions, etc. I don't even know how long it will take, or how much time I'll be away from work.

Good luck to you all - I hope we all find relief soon! (I've felt this way for so long that I'm not sure what to expect after getting my levels where they need to be...will I be like the Hulk? Will my new theme song be "Iron Man"?! ;) )
This is a little long, I apologize -I had my first iron infusion yesterday (Monday 5/20/13). Let me preface this by saying I am a HUGE weenie and I was dreading this big time! My husband came along with me to keep me at ease, and that helped a lot. It also helped that the ladies in the Outpatient Clinic were super nice!!

My appt was at 12:30 and I was told to call an hour before so they could order my iron IV from the pharmacy. I arrived about 15 minutes early, and after I checked in, they directed me to the room where I’d make myself comfortable for the next few hours. Yes, few hours. It takes about 2.5 to 3 hours for each infusion! (Don’t panic – there was a sweet lady next to me who had been there for 6 hours that day…she had some kind of virus in her heart and now has to have an IV treatment five times…I don’t know what was in her IV, but bless her heart!)

As I walked into the room, they told me to pick a seat. The room was rounded – kind of like a horse shoe shape – and all along the perimeter were squishy recliners, side tables, the IV stand, and a little television. I selected one next to the lady I mentioned above. Within a few minutes one of the nurses began prepping my arm for the IV. Again, huge weenie, so I was not looking forward to this part!! She was a true professional, though, and within a few seconds had my port ready to go. I was doing fine, calm and everything, until I saw the bag of brown fluid that was about to be pumped into me! So I turned to my husband who insisted on making corny jokes to keep me entertained :)

As soon as the drip started, I didn’t really feel anything. Then I felt the cold begin circulating throughout my body. It was an interesting feeling, to say the least. The nurse brought me a warmed blanket and asked if I wanted anything to drink. I brought my own water and some crackers on the advice of a friend, so I was set. About 20 minutes into the drip, the IV decided to be all shouty and loud. Apparently the drip wasn’t flowing as well as it should. The nurse propped my arm on a pillow and silenced the machine. They nurses also made their rounds, asking if any of the patients needed refreshments or bathroom breaks.

I never had any pain or total discomfort – just the coldness of the IV and a slight stinging where the IV was inserted. I didn’t notice any other stinging or burning anywhere else, so I figured that was good. I managed to start a new book and read a couple chapters into it before I realized the drip was almost empty! The last 30 minutes felt like an eternity – waiting for the bag to totally drain and then begin the observation period. Because I’d never had the iron IV before, they wanted to be sure I didn’t have any reactions. Some people are allergic to it – breaking out in hives, etc. This brand of ironVenofer – seems to have the lowest occurrences of allergic reactions or side effects. I’ve read that people who cannot tolerate taking pills or multivitamins in general seem to have more side effects (headaches, stomach aches, diarrhea, nausea, etc) So far, I’ve had brownish colored urine, which is normal I hear and only happens the first couple times you use the restroom after the treatment.

I go back today (5/21) for my 2nd infusion, and then again on Thursday (5/23) for the final infusion. The nurses said it may take anywhere from 3-4 weeks before I notice any difference, but this is a much quicker process for raising the levels than relying on the oral supplements alone.

Today I am going to ask them to try the IV in my right arm since the left was a little sore yesterday…and hope they can find a good vein without too much prodding…my veins are so tricky and like to hide sometimes, even after drinking buckets of water!

I hope everyone else is doing well with their treatments and can post their experiences – I think it’s important to hear both the good and the bad so you kind of know what to expect…especially in cases like mine where the doctor hasn’t provided much in the way of information on the treatment, and just tells you that you need to do it!

Best of luck and blessings to all!





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