Imuran and anemia

[Jmoon]

I am on a whopping 200mg dosage of Imuran (I'm only 100lbs) and am suffering from anemia bc of it.

Tried many diff iron pills: poly, tandem, liquid, chelated, you name it. Only thing that works without giving me massive heartburn and indigestion is IV iron.

Any advice on how else to increase hemoglobin?

 

[Jmrogers4]

probably won't make massive amount of difference but you iron skillets/cookware. You will get trace amounts each time you use. I believe there is a thread on her about it. I will see if I can find it and post the link

 

[CrohnsChicago]

It sounds like you and your doctors have tried many sources of iron, even the IV route which some people eventually have to resort to for their anemia.

Beyond what was said above, my suggestion would be in addition to what you are doing to also try adjusting your diet where possible to include high iron foods. Liver is a great source.

I know some folks cannot tolerate the taste of liver but I actually heard an interesting way of preparing it. After you cook it, cut it into cubes not much bigger than pill-size and freeze them. Once frozen, take one "liver pill" like you would most other medication...with a glass of something to wash it down. I know it might sound like a bit much but it's actually very clever and supposedly you avoid a lot of the taste this way . I am considering trying it myself as I have had anemia/borderline anemia since I was a kid and I can never seem to get my hemoglobin levels to a reasonable state.

I'm assuming you've had your vitamin B12 levels checked as well? B12 also plays a major role in the production of healthy blood cells. http://ods.od.nih.gov/factsheets/VitaminB12-QuickFacts/. If you haven't had these levels tested it would be a good idea to discuss it with your doctor.

Most foods high in b12 are also high in iron and vice-versa so diet could also be a way to help out a little bit hopefully.

 

[Jmrogers4]

That is actually a great idea CrohnsChicago. I may have to try that as I have been borderline anemia pretty much my whole life. I remember my mother trying to feed us liver one time, told us it was steak my sister and I told her then there was something wrong with it because it was the worst tasting steak ever. My teenage brother said it tasted fine to him and kept shoveling it in although at that time I don't think there was anything he wouldn't eat.

 

[Jmoon]

Thanks everyone, my hematologist is pretty certain my anemia is due to bone marrow suppression from the Imuran since it's such a high (but therapeutic) dose but it is certainly taming the Crohn's so I am afraid to switch drugs. Iron levels SEEM normal. I'll keep messing with iron to see how much of a boost it will give me. Going to give liquid iron another shot. My hemoglobin is at a constant 8. I asked for EPO (learning this from Lance Armstrong) to which they answered, "blood transfusions". Frustrating vicious cycle, especially if you are your own advocate...

 

[Catherine]

Have you looked at your b12 levels, my daughter hemoglobin only started increasing after we started supplementing her low normal b12 levels.

 

[Jmoon]

Hi Catherine, I give myself a monthly b12 shot since part of my ileum is gone...

 

[Catherine]

Have they rule out thalassemia as a possible cause of the anemia?

 

[alex_chris]

Thanks everyone, my hematologist is pretty certain my anemia is due to bone marrow suppression from the Imuran since it's such a high (but therapeutic) dose but it is certainly taming the Crohn's so I am afraid to switch drugs. Iron levels SEEM normal. I'll keep messing with iron to see how much of a boost it will give me. Going to give liquid iron another shot. My hemoglobin is at a constant 8. I asked for EPO (learning this from Lance Armstrong) to which they answered, "blood transfusions". Frustrating vicious cycle, especially if you are your own advocate...

That sounds very much like several years of my own iron deficiency problems in the past. I went that far to phase out azathioprine among other things because of iron deficiency. Turns out that aza wasn't actually really responsible for the low iron and low hemoglobin but a combination of malabsorption and just generally a chronic malfunction of low hemoglobin that starts to happen when your ferritin blood level is just constantly low. Blood transfusions are the absolute last resort (and yes I had them 3 times, always 4-5 over 2 days in hospital). My lowest measures hemoglobin level at the end of 2011 was 5.2 once... Not recommended.

Today I am at a hemoglobin level of 16.5 (last measurement a month ago) and ferritin levels above 100 despite 150mg aza per day. The reason is pretty simple a. I am in deep remission so my last diahrria was about 5-6 months ago I believe, b. I am taking 160mg iron supplements in tablet form (I searched long and hard until I found tabs that didn't upset my stomach) and 80mg of solvable tabs (using a LOT of water for dissolving the tab so it's not intense) and c. Endurance sport (in my view very important for higher hemoglobin levels). Lastly, vitamin D, B6, B12, folic acid, magnessium, zinc, potassium supplements.

P.S. you say your iron levels seem normal, do you know your current ferritin levels?

 

[Jmoon]

alex, this is fantastic input and advice. i'm going to try everything you are trying now. my imuran has been decreased to 150-thankfully. DEEP remission sounds amazing.

thanks again. btw, i believe my ferritin was around the 20s but iron saturation, etc, all normal...it was def the imuran since WBC was so low. i also feel fantastic post transfusion and feel like i can run 10+ miles a day. oh to feel like this everyday...soon.

That sounds very much like several years of my own iron deficiency problems in the past. I went that far to phase out azathioprine among other things because of iron deficiency. Turns out that aza wasn't actually really responsible for the low iron and low hemoglobin but a combination of malabsorption and just generally a chronic malfunction of low hemoglobin that starts to happen when your ferritin blood level is just constantly low. Blood transfusions are the absolute last resort (and yes I had them 3 times, always 4-5 over 2 days in hospital). My lowest measures hemoglobin level at the end of 2011 was 5.2 once... Not recommended.

Today I am at a hemoglobin level of 16.5 (last measurement a month ago) and ferritin levels above 100 despite 150mg aza per day. The reason is pretty simple a. I am in deep remission so my last diahrria was about 5-6 months ago I believe, b. I am taking 160mg iron supplements in tablet form (I searched long and hard until I found tabs that didn't upset my stomach) and 80mg of solvable tabs (using a LOT of water for dissolving the tab so it's not intense) and c. Endurance sport (in my view very important for higher hemoglobin levels). Lastly, vitamin D, B6, B12, folic acid, magnessium, zinc, potassium supplements.

P.S. you say your iron levels seem normal, do you know your current ferritin levels?

 

[alex_chris]

alex, this is fantastic input and advice. i'm going to try everything you are trying now. my imuran has been decreased to 150-thankfully. DEEP remission sounds amazing.

thanks again. btw, i believe my ferritin was around the 20s but iron saturation, etc, all normal...it was def the imuran since WBC was so low. i also feel fantastic post transfusion and feel like i can run 10+ miles a day. oh to feel like this everyday...soon.

Hey, Jmoon. Yeah, I know - post transfusion you feel quite well, but without some type of supplements or other ways to keep iron up, things gradually decrease again. I've been there ;-).

By the way, while ferritin in the 20s isn't "that" bad, it's definitely anaemia territory. The old normal range sort of said 20 to 150 is normal, but the more updated ranges used to day say 35 or 40 to 150 are normal ranges for ferritin, which I personally think make more sense.

Also, just to clarify why I said "deep remission" in contrast to just remission - for many, many years I thought that remission meant to have some, but not many symptoms and diarrhea sometimes, but not every day or week. Well, now I know you can be virtually symptom free, which also means that your malabsorption of things like iron easies or even goes away. That's what I meant by "deep" remission - which I've only experienced in the last year and a half.

I hope things work out for you.

Cheers,
A