I know that my iron is severly low right now, but with PV I have too many red blood cells and my hemo says there is nothing we can do about my lack of iron. A nurse called to start infed infusions, but I was called back and it was cancelled due to the PV. I did some research (not much at all, too tired) and a lot of things can cause a drop in iron. I will always have low iron, but mine is low right now even for me. Everything I read about iron deficiency says that they should find the root cause before treatment is started, so your doc's probably have a good idea of the cause. I would ask them.

I have iron deficient anemia and am taking otc iron supplement while waiting for a consult with a GI dr. My primary says I am losing blood but doesn't know where. My two scopes last august were fine so who knows? My mom had the same thing and had to have the infusions.

Mary,

Here is what the Lupus Foundation of America has to say about this subject (www.lupus.org):

The most common blood disorder is anemia, affecting about half of all people with active lupus. Anemia can be measured and discussed in several different ways, including a low red blood cell count, low hemoglobin, or low hematocrit. Each doctor usually has a preference for using a particular term. In the most important sense, anemia means too little hemoglobin. Hemoglobin is the protein inside red cells that carries oxygen from the lungs to all the tissues of the body. Fatigue, a very common lupus symptom, is generally the first and most common symptom of anemia.

Common Causes of Anemia

Normal red blood cells live only 120 days (about four months) and must constantly be produced by the bone marrow. The commonest explanation for anemia is reduced red cell production. This may be due to inflammation; kidney problems (when the kidneys do not produce enough of the hormone, erythropoietin, that stimulates the marrow to make more red cells); iron deficiency (without which hemoglobin cannot be madeiron deficiency may result from menstrual bleeding or from intestinal bleeding due to non-steroidal anti-inflammatory drugs); or direct depression of the bone marrow by certain lupus drugs (such as azathioprine or cyclophosphamide). Intestinal bleeding can be obvious if the stool is red, maroon, or pitch black in color, but often bleeding is so slow and gradual that special stool tests are needed to detect it.

ME AGAIN: Do you know what tests your doc i==has run to determine that you have iron deficiency anemia? There are more than 400 kinds of anemia, caused by different things and the rarer ones some times get missed in diagnosis.

Also, some of the symptoms associated with lupus such as fatigue may be caused by anemia. There is a reason that lupus is called "The Great Impostor" but it goes both ways. Patients with postiive ANA can get swept up mistakenly in the lupus net so it's very important to make sure that your anemia isn't a disease all by itself and causing your symptoms.

What gives me pause is the fact that you have had so many iron infusions. Normally iron anemia can be treated with oral pills and doesn't need repeated transfusions in lupus patients; certainly NOT 10. It makes me concerned that you may have something else primary that's causing your problems. Has your hem. said anything about your blood cells not maturing or dying off too quickly? Often a hem. will order a bone marrow biopsy to see if you are producing enough healthy red cells which carry the iron through your system. Without that, dumping more iron into your system is useless, it will just pass through.

From WebMD, here is a list of the tests that need to be done to determine the cause of anemia as in a case like yours. Ask your doc if he/she has done all of these.

Blood tests will not only confirm the diagnosis of anemia but also help point to the underlying condition. Blood tests may include the following:

Complete blood count (CBC), which determines the number, size, volume, and hemoglobin content of red blood cells

Blood iron level and your serum ferritin level, the best indicators of your body's total iron stores

Levels of vitamin B-12 and folate

Special blood tests to detect rare causes of anemia, such as an immune attack on your red blood cells, red blood cell fragility, and defects of enzymes, hemoglobin and clotting

For suspected hemolytic anemia, tests to identify the breakdown products of red blood cells in your blood and urine



Hope this info helps.

Tracy

Thanks Tracy for all of that information

digestive enzymes will help you absorb minerals for the first time

enzymedica makes good ones, and liquid minerals ...epsom salt baths..yo absorb through skin...remember, you need other minerals to absorb foods. iron deficiency sounds like a pecking order problem, not enough of the other minerals to process compounds

Thank you Tracy for taking the time to respond in so much detail. My hematologist ran extensive labs, and my ferritin level was very low, along with many others, and also my total iron, I do not have any internal bleeding, and I had a full hysterectomy so I do not menstruate either. She felt quite confident that the anemia, which is iron deficient anemia, was caused by my Lupus. I have been followed by a hematologist for many years because I have had problems with my WBC, along with all the red blood cells, and yes, mine are premature, but nothing other than the Lupus has been found. I am confused about the others comments as well. My doctor, who I trust, says Lupus can cause an Iron difficiency, including my total iron stores, so now I am concerned that there is something I am missing. I was told that for the total iron stores I had on labs, it was a very normal amount to receive a minimum of 10 iron infusions to build back up to an acceptable result. My doctor is in Boston, Ma, and people fly here from all over the world t o see the best of the best, so it concerns me that you are raising concerns.
thank you for all your time, '
Hugs,
Mary

I am in the same situation as you Mary. I am going to have my 6th out of 10 IV iron treatment tomorrow. Still no changes in my symptoms. I am actually getting worse. My primary has completed Lupus testing and I am awaiting those results. Although my onoclogist has said that after the 10th iron treatment my iron will be tested again and that I may need more like you were told. I guess we are common. I have researched and researched this. I have found a link between hypothyroid and low iron, but it is a new medical connection, so no reason why or what treatment suggested or if it is connected to another disease. I also had heavy chemo and radiation 16 yrs ago so I was told there may be a connection there. But I am getting worse, not better...I have a long, long list of symptoms, the worse for me is severe pain, lethargy and my hair is breaking off and I have only 1/4 of the hair I had 18 mos ago. So far I am using that hair powder to cover thin scalp spots, but I am considering a wig. I read on one forum about a woman who has been receiving IV iron for 4 years now! I just don't know, like you, what to think as to how long this will go on and if I will get any answers. I am hanging in there until treatment 10 to see if my iron saturation is better. When I started it was less than 10%. Good luck to you! Beverly

I had severe iron deficiency anemia for 29 years I had iv iron and shots, I had some improvement here and there mine was do bad I had to have blood transfusions. My white cell count became higher and higher over the years so I have had multiple bone biopsies and narrow I know most samples were sent to Mayos no good reason was ever found and yes I have the most viewed intestines in the county the gi doctor never found a source. My brother who refuses to get tested is 6 ,ft 2 in talk and weight about 290 Went blind with no real explanation has never had a bad habit and has been very anemic though no transfusions with a hi white count for about the same time frame so when they blamed my periods I laughed. I finally was cured of this in 2001 when I was put on prednisone other than when I hemorrhaged due to counidin and warfarin at the same time for months due to a pe I have not had a problem since my brother still does denial hurts he has had iron im. Anyway that is the only cure I am aware of and it worked.great. But still have white cell issue which they now blame on prednisone ever though I remind them I had it before I started it so I had a bone narrow a couple if years ago no real help my only concern is mom had similar issues and ended up with lymphoma but it happened the first year her counts were noticed and the percentages of different white cells were different. Ok way too much I am here although I now have IPF so I had not thought of this since I have that to think about and my hemoglobin is ,,13 or14 everyone for 10 years. Tj

Forgot to add this was an initial dose that was very high it was meant to stop something that was killing me. It is,alsobased on a maintenance dose of over 10 mg a day since. I have addisons so it is all different for me.

Wow! Great info here.

I also have really low Vitamin D - another gift from the Lupus bag.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=4278&zoneid=76

My vitamin d was 15 % of normal and I was taking a 1000 iu dose a day I was moved up to 3 a day that was a few months ago. That is a problem for lupus sufferers in general maybe not quite that bad but maybe he did not say.

Are you on Methotrexate? That causes issues with iron?