Iron and the lungs

Thank you Andy,

I know I had read somewhere about it before. So far as I have been introduced in this new case is there only AIHA and nothing before. Personally I believe she must have an anemia which is unknow. I will post today or tomorrow an article about such case.

I will pass all the information to this person. If I have I'll give you an update.

The L1 story was based on the woman who wants a BMT. The latest information I have is from the beginning of Januari. Her sisiter can not be her donor  and they have told her also that she is too old for a bmt (36yr). They are now looking for an other option. I start me thinking about undergoing a bmt for myself. What is the frontier of doing this? I have been told that I have to 10yr. But at that time I believe it was a ridiculous idea.

@ Sharmin: it is an interesting topic. I have never thought about lungs and iron before. I dunno, but 10years ago I underwent an MRI to find out how much iron there was in my whole body. After all this years I dont know of this was the real reason.

Conflicting advice about chelation?

What needs to be remembered is that different drugs work differently with different people. About 16% of patients using Exjade find it ineffective at reducing iron load. Others people have tremendous success with Exjade, while others have average results. My late friend Gurleen (I really miss her), could not tolerate desferal and kelfer (L1) was totally ineffective for her. Many patients cannot use desferal often enough to keep their iron load down (Lisa). What does this all mean? You will see that with any and every drug, there are differences in how well they work with different patients. Some people like Poirot, do very well using only L1. Smurfette was doing quite well with L1 until her white cells dropped. Gurleen's ferritin was 12,000 on L1. Some people can do well with only one chelator but many people would be better off if they could use a combination.

There is no doubt that combination chelation is currently the best method for removing iron load from all organs. Every trial has showed that desferal and L1 together give the best results. The small trial that little A is in will give us some idea about the combination of Exjade and desferal. Perhaps the best chelating combination is not yet available. In my opinion, the safest and least bothersome chelation is not yet available and won't be unless funding can be raised to run the next stage of trials. This is starch DFO (desferal) being developed by Biomedical Frontiers Incorporated. This is a one hour IV treatment that could easily be taken while being transfused and the chelation effect lasts for up to one week. The potential for this chelating drug, especially when used in combination with other chelators (and it would be safe to use with all the current chelators in use) is great. A once weekly IV treatment could be combined with a reduced amount of another chelator to provide adequate chelation, and by doing so, this would also reduce the side effects of the other chelator. You can expect to hear me say more about starch DFO, as I believe this would be a Godsend to many patients who have trouble complying with chelation enough to keep their iron load in a safe range. I want to see this company get the necessary funding and I will continue to promote the development of this new chelator. The patients need it.

Sometimes patients have been able to take chelation breaks when their ferritin gets very low but this is only temporary. Lena is managing her iron load quite well and her program is working for her. I would not suggest any changes because it is effective. Each patient is unique and this is why individual treatment programs should be designed for each patient. When ferritin is in the hundreds, it does have to be regularly monitored and chelation dose adjusted if necessary, as chelation can cause harm if iron load is not above normal.

There are no simple answers and explanations for this topic. Chelating drugs do not work the same in each person and while some people may do well with strict compliance to one chelator, others may need a combination, either because the chelator they use is not sufficiently effective for them or they are not able to take a high enough dose to keep a correct iron balance, so combination is necessary (I think most patients fall into this category).

Sharmin,

I agree that the dose of IVIG can be cut and possibly eliminated altogether. The understanding of how and why IVIG works is not complete and it is a powerful therapy, so it isn't something that you want to see a patient use indefinitely. With his levels back to normal, it is a good time to try reducing the dosage with the goal of stopping completely when indicated by stable levels in his body. Dealing with autoimmune disorders is still a guessing game and nothing is certain until you see results. Once things are reversed, we can hopefully see a reduction and possibly elimination of the need for the treatment drugs.