Hi towncar lady,
Patients with RARS often have a good prognosis
. That means that you will need iron chelation. When doctors discuss iron chelation they look at the prognosis, liver tests and eventually the iron in the heart with MR.
http://www.mds-foundation.org/pdf/iron-english.pdf
I have a port-a-cath that was implanted Jan 2007 because my doctor knew I should need Desferal that is the first drug for MDS patients in Sweden. A port is a small device of titanium with a catheter to a big blood vessel so I can get transfusion and Desferal infusions without feeling anything.
http://en.wikipedia.org/wiki/Portacath
As far as I understand many patients get Desferal sc (under the skin) but I think iv (in the vein) is better.
Desferal has not given any adverse reactions
. When I tried Exjade up to 4 tablets/day I devided the dose and took 2 tablets in the morning and 2 tablets in the evening (2 hours after meal and 30 minutes before meal) to avoid nausea and I didn't get any adverse reactions that I could feel but my WBCs decreased
(my HGB increased).
My latest ferritin value was 1844 but I hope the next will be lower. My liver tests have always been OK. Actually my doctor (a specialist in MDS) isn't sure about the effect of a low ferritin level. Many studies have showed that it is important for patients with other types of blood diseases and they are now starting a study with 630 MDS patients to assess the efficacy and safety of iron chelation therapy with deferasirox compared to placebo in patients with myelodysplastic syndromes (low/int-1 risk) and transfusional iron overload.
http://clinicaltrials.gov/ct2/show/N...ing+mds&rank=1
Kind regards
Birgitta-A