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Hi, I am new to the board. I have had iron deficiency anemia for about four years now without any identifiable cause. It was initially blamed on heavy periods and fibroids but I had a myomectomy and the anemia persisted. I did oral iron for a year without improvement.

I was then started on IV infed after a large GI and hematological work-up. The infed almost did me in on the first dose. No more infed after that experience so I was switched to Ferrlicet. I have been taking the Ferrlicit for 8 week courses every 4-6 months. I was reacting to the Ferrlicit but it was controlled with lots of IV steroids and IV benadryl.

At the end of last year, I had a severe reaction that could not be stopped and was hospitalized for several days. I was then told no more IV Ferrlicit and that they were not willing to try the final preparation, Venofer. I have since had several blood transfusions.

A couple of weeks ago, I was sent to see a new hematologist and he wants to try to give me Venofer. I really wanted to try it months ago but now I am really worried about doing it. The company says it is contraindicated in patients that have had a hypersensitivity reaction to any other IV iron prep. I hate the risk of getting blood transfusions so I am wondering if it is worth the risk of trying the Venofer.

I am wondering if there is anyone out there that has had bad reactions to Infed and Ferrlicit but did fine with Venofer? I think I would feel better if I could hear from even one other person that has been in the same situation as me. I need to make a decision quickly as my counts are terrible and I am feeling equally terrible.

Sorry this is so long. I am open to any thoughts or personal experiences.
i didnt have a reaction but venofer is the safest way to go i had no side effects from it good luck charlene
I have no experience with IV iron therapy myself. You can use the search box at the top of the page and see what others have had to say about IV iron. From what I have read Venofer is the only way to go if you are going to go the IV route.

What types of iron and what doses were you on before? Was there any amount of absorption going on? I ask because I was also told that I couldn't take oral iron, but did in the end after going to a new doctor that put me back on iron supplements at all costs and this was a Hematologist. I though he was crazy and that he was trying to kill me or something. I did go back on it and finally after many months it kicked in for me. This was all based on the fact that I went from a 2 to a 6 ferritin he said that I was in fact absorbing and that's all he needed to know. It has taken me over a year to get to a 43 ferritin and I am still on iron and sure that the ferritin is up to 60 I hope by now. I was moderately anemic for 7 months, 8.5 hgb and 2 ferritin.

I was told my anemia was from heavy periods (Polyps), but that is resolved now which did help a lot. I am still a very slow absorber and I am told ( a year later by the GI) that is is from taking Nexium for 8 years. Good luck to you. FLFLOWERGIRL:)
Thanks for your replies Charlene and FLFLOWERGIRL.

I have been on many types of iron. Initially, I took 325 mg ferrous sulfate three times a day but I have tried so many others that I can't even recall them all. I took oral iron, Slow FE, Femsol, etc. I even tried beet juice because a physician told me that would work. It didn't!

I do have malabsorption based on several tests that were run but my small intestinal villi look great on biopsy. I have a huge family history of Celiac disease. I tested positive on the blood test but since the villi looked great, I was not given an official diagnosis. Despite this fact, I chose to go gluten free several years ago but it has not helped the anemia.

My docs think I have to be bleeding within my GI tract but nothing has ever been found except for a severe case of erosive esophagitis and a small gastric ulcer. Neither area had any signs of bleeding though and my stool cards have always been negative. I was on a PPI for the esophagitis but that was stopped because my anemia was worsening after I started taking them.

Even on IV iron, I only get a modest bump in my ferritin and then down like a rock I go. My ferritin level is at 2 currently with a Hgb of 8.2.

Thanks for the suggestion to search for IV iron. I had done that already but I couldn't find anyone that had reacted to two forms already and then went on to take a third. Maybe someone out there has had this experience and will read this post.
Today was my second day of Venofer via IV and once again I had no problems.
Don't worry. I freaked out reading all the stuff about IV Iron Therapy. I was given the option of 3 long periods of IV or 5 shorter sessions and took the 5 shorter sessions...thinking it would be easier on the body to tolerate. My only complaint was a metal taste in my mouth which a lemon drop took care of.

I am just wondering what happens next if this doesn't work.
Thanks for your reply Barbara and I am glad that you did well with your venofer.

I decided to go ahead and do the venofer. I had my first infusion yesterday. I don't know who was more nervous, me or the staff at the infusion center. I did okay but not great. I was pre-medicated up the ying-yang. They did run a test dose first which I guess is unusual with with venofer.

The actual infusion was not started until one hour after the test dose and they ran it for 4 hours. I did have some itching and rash within 15 minutes of starting the actual dose and then some very low blood pressures for the remainder of the infusion. I had to stay for a couple of hours after the infusion for some extra IV fluid while they tried to boost my blood pressure up. I also had incredible muscle pain and developed a fever but they gave me extra tylenol and IV solumedrol.

Today, I feel terrible. Like I have the worst flu of my life. I am dizzy, achy, feverish, and nauseated. I had to call in sick and I never call in sick to work. I have 5 more infusions to look forward to in this round and I hope I can get through them. They told me yesterday that I would be needing to do these or blood transfusions for the rest of my life. A very depressing proposition.
im sorry you had a bad reaction. i have a problem also my villi are flat but they told me no celiacs so who know after 3 ivs im up to 10.8 h and 66 ferritin. it makes me mad the blood dr never called . my neice who works in my pcp office called me because she knew i wanted to know so i dont even know where im going from here
i looked into the lab and but never did anything i also thought about going gluten free but when they said it wasnt a problem i thought id much rather eat good bread i did buy gluten free bread it upset my stomach go figure thanks charlene

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