Iron Overload

[Joan2438]

A year ago my husband was put on Exjade as his serum ferritin level was between 1400-2000. He developed a horrible reaction to Exjade so had to stop taking it. He is not having any chelation done now. Does any one know how long one can have excess iron in his body before sit starts doing all the nasty stuff excess iron can do?

Also, has any one been advised not to eat food rich in iron?

thanks.

Joan

[billboy]

Hi Joan,

You ask a good question. One which I have not yet found answered in any specific way – regarding how long before excess iron in blood produces detrimental effects. I know in general it takes years rather than months. However, deposition of iron in your liver and heart, as well as other organs, is initially asymptomatic. So one wants to err on the side of caution. In the link below you’ll find that keeping serum ferritn below 2500 is associated with increased disease free survival with respect to the heart.

http://www.excessiron.com/excess-iron-symptoms2.jsp

That said, most doctors initiate iron chelation well before reaching that level. My current hematologist restarts my Exjade treatment when my SF reaches 1200 or so.

I was never advised to avoid iron rich foods when experiencing elevated SF levels. In the above link there is a comment that one unit of blood contains 100 times as much iron as a normal daily diet. So I guess that’s why.

Another good reference link is as follows:

http://irontoxicity.com/hcp/treatment/myelodysplastic.jsp

You didn’t mention what category of MDS your husband has, but those with the most virulent types are often not chealated since their life expectancy is relatively shorter. So this is the only information I have found that indicates that detrimental deposition takes years rather than months.

Perhaps your husband could tolerate the subcutaneously administered deferoxamine. It works well, but the method of delivery is difficult to accept.

Bill F

[Joan2438]

Thanks, Bill. Don has MDS-RA. Is getting Aranesp every two weeks. Dr. didn’t push the subcutaneously deferoxamine.

Joan

[marlene]

Sometimes reactions are dose related. Like skin rash, digestive issues, increased creatinine levels. Many docs will stop therapy, let the problems clear up and try again at a lower dose. My husband never got to a full dose. He started low and worked his way up. Eventually, he stopped because his kidneys didn’t like it anymore.

I too would ask about desferral. It’s not fun but if you cannot do Exjade, that’s all that’s left.

They say it takes 10+ years to see side effects of too much iron but the young and old seem to be effected sooner. I think it effected John’s endocrine system early on. Also, his doc said it could accumulate in the bone marrow, suppressing production. But John’s FE was up to 4600 within the first six months of diagnosis.

[Joan2438]

Don’s Exjade reaction was not dose related. Highly allergic reaction. Drs. didn’t believe it and tried lower dosage. Within 6 hours, Don had allergic reaction. That convinced Drs.

[marlene]

Well that’s not good….Is he going to try desferral? And if he is, can they do a skin a test first to check for an allerigic reaction?

[Joan2438]

At this point he is not going to try desferral. Your suggestion to test for allergic reaction first is excellent, Thanks. He hasn’t had a transfusion in 15 months.

[marlene]

No transfusions is a good thing!

Even though John’s HGB is still below normal, he’s getting 250ml of blood pulled off every other month to reduce the remaining iron. It’s safer for him than using the drugs at this point.

As long as his HGB was above 10, they’ll do the phlebotomies. Of course, you have to be able to rebuild your blood. So right now, his HGB is stable in the 11.5 – 11.8 range.

We tried this once before and he had to stop. He was doing 450ml every month. Over time, this amount and schedule was just too much for his BM. That’s when he started Exjade.

[Joan2438]

How great John’s HGB is staying in the 11’s. Don’s is in the mid 9’s.

[Author]

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