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[QUOTE=wanglin;4254787]I have had 2 iron IV infusions (don't get confused with transfusion) and am set up to have my 3rd in about three weeks. This has been over a 3 year course. My Ferritin levels went from 165 last August to 32 a week ago, so my body is still not naturally absorbing iron even thought I take 1 Icar tablet each day. My white blood and red cells are below normal levels and my hemaglobin is low as well. I am still very frustrated about the hematologist not knowing why I can not absorb iron after every test inthe book(Bone Marrow, Pill cam, endoscopy, colonoscopy, smear tests). The PA last visit said, " I guess we'll just write it off to your cycle as the issue" and I immediately told her NO Way as my cycles are not heavy. I truly think it is a heriditary auto immune disease since my sister appears to be anemic as well without answers. I hope that maybe something will stand out in your blood work to give your doctor a direction to take.

On the first visit you can expect a great nap as they feed you benedryl in case your body reacts to the iron in a allergic way. I have not had an allergic reaction and feel pretty normal afterwards, just groggy fromt he benedryl. The only other thing to watch out for is bad headaches, and lower back pain or joint pain because your body is trying to absorb a large quantity of iron all at once. Cheers to IV Iron![/QUOTE]

Thanks for the response and for the correction about infusion rather than transfusion! Rookie mistake!! LOL! The info you gave me was REALLY helpful. I have a couple of questions, tho, other than the headaches and back/joint pain, did you notice that overall you felt better right away? Honestly, I don't feel ALL that bad. Tired, yes--but I think I've been this way for so long it doesn't really slow me down or stop me from doing what I've always done as far as chasing after my family. BUT once I get home, I see that I am TIRED and it's not a normal tired... I really, REALLY tired, but I don't sleep well, it is really strange. :confused: So there's not a ton of motivation to get out and exercise and that's what I'm hoping this iron will do for me. Help me to feel better all around that I WANT to exercise and feel better!

I am so sorry that they're not able to get to the bottom of your iron problems; that IS so frustrating. My gastro doc did the same thing--"it's because of your period" and "you're cold all the time because you're a woman, women are generally colder than men; it's not anemia related". Frustrating. I hope they can get it figured out for you. Do you by any chance take Nexium? I am really hoping that's the main cause of my anemia and this will just "go away" if I am able to stop taking it.

I hope to hear back from you :wave: and thanks again for taking the time to post an answer! You don't know how much I appreciate it!

**Jonnstar--I will look into this! Thanks for your responses, also! So helpful.

-Wendy
Well, I got the phone call from the doc's office yesterday. Ferritin levels have dropped AGAIN, so they're going to start me on Venofer IV infusions. Once a week for 5 weeks. Anyone out there had good results with this type of infusion raising the ferritin levels quickly?

I'm hoping that with the switch to Zantac (from Nexium), taking 1000mg of B12 daily, a multi vitamin and Vitamin D AND these new iron infusions that this will conquer my iron deficiency anemia. Has anyone out there ever gotten rid of anemia once and for all??? If so, does it take YEARS for everything to go back to normal? I'm beginning to think this is starting to take over my life! I'm freezing, have no energy and think about sleeping ALL the time, but I never do... Too much to do.

Also, are there any strange side effects I should expect from these types of infusions? Guess I'd better get reading the boards again.
Well, I had my 5th and last iron infusion a couple of weeks ago. I honestly can say I don't feel much different. For awhile I was feeling warmer, but now I'm back to feeling cold much of the time. Energy level hasn't gone up much either. I know everyone says it can take up to three months for that to come up, so I'm patiently waiting.

Upon the request of my hematologist I had to have another Upper GI/EGD last week. Had that with my gastro doc and they took a bunch of biopsies and went all the way down to my bowel to check it all out. From what I recall and my husband says, everything looked okay to the doc, but I haven't gotten any results from the biopsies. I would assume that since it's been about a week and a half that if anything serious was going on, I would know by now. I guess I'll find out more info when I go back for my follow up with the hematologist on Sept. 13th where my numbers are, etc, and the results of my EDG biopsies.

One things I did find out was that I have pancreatic tissue in my stomach!!! Of course I freaked out, but the doc said it was just a genetic thing and not to worry at all. I googled it when I came out of my "fog" from being put out for the procedure and it looks like only 15% of the people in the world have pancreatic tissue in their stomach and it's usually nothing to worry about. OF COURSE "I" would have to be one of the people in that 15%. FIGURES!! LOL!

So, I'm praying that everything comes back as normal. The gastro doc did say before I had the upper GI/EDG, that my body just may not absorb iron. Lovely. Can't wait to hear if that is the case and what they do for someone in that situation. Iron infusions for the rest of my life? Oh brother!! LOL. Guess I just have to see what happens. I'm going to just keep on praying!!

-Wendy
Hey Numpy, I hope all of your GI results are normal! And did they run your hgb and ferritin again after your 5th infusion? Any improvements? I am sorry you're not feeling much better yet but maybe it just takes longer for some ppl and less time for others.

I hear you on life-long infusions -- it looks like I will be needing them for the rest of my life! Thank goodness for insurance, the hematologist bills are quite hefty.
[QUOTE=happyfeet77;4313430]Hey Numpy, I hope all of your GI results are normal! And did they run your hgb and ferritin again after your 5th infusion? Any improvements? I am sorry you're not feeling much better yet but maybe it just takes longer for some ppl and less time for others.

I hear you on life-long infusions -- it looks like I will be needing them for the rest of my life! Thank goodness for insurance, the hematologist bills are quite hefty.[/QUOTE]

They haven't drawn any more blood yet--they'll do that on Sept. 13th when I go back for a follow-up with the hematologist. Hopefully my numbers will be up! And I hear you about insurance!! Whew!!! I'm blessed to have good insurance--I don't know how people pay for these types of things without it!





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