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Hi Daisy,

What IV iron preparation did they give you? There are three types that are used. I can not use two of the types (Infed and Ferrlicit) because of severe allergic reactions requiring repeated hospitalizations but I am now using Venofer. I still react but they are able to control the reaction with IV benadryl, solumedrol and other medications. I may, over time become very reactive to the Venofer too and then the only option will be blood transfusions. If you had a bad reaction to one does not mean you will to another.

Do your doctor's know what is causing your anemia? I have been worked up from top to bottom. I do have a definite malabsorption problem but they do not know why. I have to get the IV iron every 3-4 months on average since I can not absorb oral supplements and iron in my diet is not absorbed either. My monthly cycles have been stopped by hormones but it has not slowed down my drop in ferritin. The doctors knew that my cycles were not the cause but they wanted to stop all extra blood losses.

Getting IV iron this often is really difficult on my lifestyle and well-being. Even though I feel better after the 8 week course of IV iron, I feel terrible when I am getting it. It is like having the flu for 8 weeks. The trouble with the blood transfusions is that they would not transfuse me until my Hct was below 8. I feel like death long before my Hct get to 8 and at the same time I am trying to work full time, raise my children, take care of a house and volunteer at school, etc. It is not like I can sleep all day in an 80 degree house until they will transfuse.

Good luck and I hope you hematologist has some good options for you.
Hi Kiwilily,
I have used two types, Venofer was the last one we tried and even with the Benadryl and other pre-meds I had a severe reaction. My blood pressure dropped quite low and my arms and legs swelled up quite badly. I also have a faulty heart valve, so my hematologist sent me to my cardiologist after this last transfusion and together they decided not to risk another IV but to try the oral meds instead. However, that was 11 months ago and since my levels are refusing to rise I am going to discuss the option of trying the IV again. I just cant keep running on empty.
The really frustrating thing is after dozens of tests they cant seem to find the cause of the anemia. I went to a Gastroenterologist and was tested end to end - the only thing he found was one small intestinal polyp which was removed.
Thank you for your words of encouragement regarding the IV. It means so much to hear from someone who has also had bad reactions to the treatment but has perservered and come out for the better.
Take care and I hope things continue to improve for you.





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