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Kiwilily 06-16-2008 09:58 PM

What Change Can I Expect in HgB and Ferritin post IV Venofer?
I have just finished my 3rd dose of IV Venofer. My MD expects that I will need 5-8 doses to replete my ferritin and correct my anemia. I am wondering what kind of improvement people have experienced in their CBC and ferritin levels, following a full 1000mg of Venofer. The literature, I have read, reports quite modest improvement in both of these markers after Venofer but the sample patients all had end stage renal failure. I do not have renal problems.

The studies indicated that the average rise in Hgb was around 1.2 gm/dL. It was quite disheartening to read. I am hoping for much better results. I had 6 doses of IV Ferrlecit last year and my ferritin only bumped from 1 ng/ml up to 14 ng/ml.

My hematologist does not plan to check my counts until 1 week after the 5th dose. I would love to hear of other people's experiences. Thanks so much.

Sincerely, Kiwilily

neffie663 06-17-2008 11:26 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
i had 3 ivs 200mg each so 600 total my ferritin went from 2 to 66 and hemoglobin from 8.5 to 10.8 ithink it is how your body absorbs i guess

Kiwilily 06-18-2008 08:38 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
I have been tested and worked-up for all causes of bleeding. They really can't find anything significant. They did find some malabsorption, GERD, couple tiny ulcers, etc but nothing was bleeding. They did look at my bone marrow. I make red blood cells fine but they found there was no iron stores in my marrow.

I asked my hematologist about what kind of response I could expect from the Venofer but he said that there was no way he could predict. I have had tons of IV ferrlecit and I never became iron overloaded. Actually, my ferritin never went above the mid 60's. He said my poor response indicated that there was active blood loss somewhere and that they were not keeping up with my losses. Problem is, no one knows where I am losing from.

I am very interested in the chelated iron that I have just read about on this board. I had never heard of it before and I want to ask my doctors about it. Maybe I could absorb this form of iron and stop the IV's. I couldn't find any good studies on the chelated iron. I thought that was kind of strange.

Thanks again to both of you for your responses. It is always good to brainstorm with others.

ChickieLou 06-19-2008 12:25 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
Kiwi (that's my kitty's name - swoon! I love her!)

I take chelated iron and I can't say enough good about it because I tried other types and they immediately trashed my GI system or they cause constipation. Chelated is a formulation. Several mineral supplements come in a chelated form. Supposedly, it is VERY well absorbed. But from other things I have read, you can only take the recommended daily dose and no more because it is SO well absorbed. But, that's not to scare you off. Everything I read said it one of the safest iron supplements to take and it is often given to children.

Also, I have THE touchiest tummy and I am very sensitive and it seldom bothers me, although I do feel if my tummy is already "off" which it has been recently, just about everything including this iron will not help it. I have never felt the need to stop it for any reason. I take it at dinner with a small glass of white wine or you could take it in the morning with orange juice.

I know I have run across studies during past searches and it was random, so I can't think of terms to narrow down your search. I just now tried "iron chelates studies" and got many studies, but it's all pretty scientific.

Also, when you talk to your doctor, "chelated" is pronounced like "kee-lated". That's something I found out the hard way.

Please let us know what your doctor says. I am very curious. I'm going to tell my doctor about it when I talk to her next. She can tell her patients about it when they take that ferrous sulfate stuff she initially recommended and they find themselves in agony, like I did.

Kiwilily 06-19-2008 07:43 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
Hi ChickieLou,

My cat's name is Kiwi too. Seems to be a popular pet name. Thanks for the info on chelated iron and for telling me about your personal experience with it. I have seen so many doctors and specialists but not one ever mentioned this formulation. I have been on many types of iron so I thought it was strange that this was never suggested. I also found it strange that the regular drug stores did not carry it.

I know that my physicians will want some scientific medical study to back up to back up my request to start the chelated iron. They are not much for anecdotal experience and are very much into evidence based medicine. I would just like to stop the IV iron choo choo train. The infusions are costly, time consuming (6-8 hours to get 200 mg venofer), and I hate the side effects. If I can cure myself by taking on little chelated iron pill each day, that would be great.

Thanks again for you wonderful info. I appreciate really appreciate it.


neffie663 06-19-2008 08:28 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
why does it take so long for your ivs? i was getting 200mg at a time and it only took 2hrs i would never be able to be out of my house that long i struggled with the 2hrs

Kiwilily 06-19-2008 08:38 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
My IV's take so long because they are trying to prevent a severe reaction. I am still reacting to the Venofer as it is. I get oral tylenol and zantac. I then get an IV infusion of solumedrol and benadryl. They then wait 1 hour and then give me a test dose. I then have to wait 1 hour after the test dose and then I receive the rest of the venofer over 4 hours. Usually I react somewhere during the actual dose and then it has to be stopped and I am given more solumedrol and benadryl IV. They wait and then finish up the rest of the dose. It's crazy. A whole day is gone especially when I add the commute time there and back to the city, in rush hour traffic both ways.

ChickieLou 06-19-2008 08:45 AM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
Kiwi, I just noticed your profile. I lived there once for about 3 years on Crespi. I love it there. That walk up and down that hill to the beach was my exercise, when I was in better shape. It would just about kill me now.

It's not that I don't trust doctors, but I do think their knowledge is incomplete. You might have read about my experience with heart palpitations and it was my acupuncturist who told me about magnesium for it, I took some, and it stopped them cold and they have not returned. When I had them before, my cardiologist told me "they're benign and will eventually go away" and sent me home. Yeah, like 8 months of destroyed sleep later, they went away. At the same time, I would never expect my chiropractor, acupuncturist or massage therapist to know anything about a broken bone. Everyone brings a little something to complete the picture. I think your doctor will have likely heard of chelates, but I suspect he will discourage you from taking them because he feels your anemia is severe enough to skip all oral forms of iron. You will need to assess for yourself whether or not it's worth a try.

I think most docs recommend the drug store ferrous sulfate because it's available to everyone easily. And they are aware of the miserable side effects so in the same breath, they will say "and while you are at the drugstore, pick up a stool softener, or a laxative. You're going to need it". I say "why? when there are other better irons out there, and not just mine. There are people here who absolutely tolerate ferrous sulfate and other iron formations. Most doctors discourage people from ever walking into a health food store for anything. I'm not exactly down on doctors, but I have accepted their "limited thinking" and have had to round out my own care with other "experts".

The good news, I am doing very well. Keep up your own education and with any luck and a little faith, you'll turn your numbers around soon. If your doctor feels strongly that IV iron is the only way to go, then I guess I would hang in there a bit longer. It's not an easy call, I'll grant you that.

Kiwilily 06-19-2008 08:36 PM

Re: What Change Can I Expect in HgB and Ferritin post IV Venofer?
It is a small world ChickieLou. I only live about 5 streets away from Crespi. I really like the area but I wish it was a little less foggy. No fog today though. It was a beautiful day.

I have been doing this IV iron thing for 4 years now and it is getting really old. I would love to be able to cure myself and maybe the chelated iron is the answer. I am going to see what my docs have to say about it and go from there. If they are agreeable, then I will go and buy some once I finish my current course of IV iron. The never want me to take oral iron when I am getting IV iron.

My counts always improve following IV iron but they don't stay up. This is my first time on Venofer so I will have to see how it works for me. If it doesn't, then it will be back to blood transfusions since there is nothing else I can take.

Thanks for your thoughts. You do a great job explaining things.

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