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Old Sat Jun 29, 2013, 06:15 AM
Birgitta-A Birgitta-A is offline
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Join Date: Oct 2007
Location: Stockholm, Sweden
Posts: 1,918
Txs

Hi Chirley,
Thalidomide has really had very positive effects on my counts - the median time for response is 9 months and I am still responding after 38 months though I need a higher dose.

When my HGB decreased after a tx Feb 2013 they took a lot of blood tests but since I have very severe myelofibrosis (since dx) it is difficult to be sure of why the the HGB decreased.

Then all blood-units has been very well matched and fresh but I don't think that has made much difference. I have had autohemolysis since dx but the autoimmune symptoms has increased much during the tsx free interval. Most drugs for that like Cellcept or Mabthera can give dangerous adverse effects like opportunistic infections on the brain.

There are probably many reasons for blood txs to stop working and hemolysis is one of them - you know my bone marrow is still making red blood cells but more damaged bone marrow can perhaps not make any red blood cells at all.

Of cause it is VERY important to cross match the blood properly.

I don't like 3 units of blood because my dose of the iron chelator Desferal is the same in connection with all txs - 3 units mean less Desferal for every unit of blood.

For you who don't get any iron chelator - I think all iron chelators can take other metals like copper too - I don't think it matters if you get fewer units blood often or more blood less often.

Hope we both will manage as long as possible with our symptoms!
Kind regards
Birgitta-A
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