Heamachromatosis
Posted , 3 users are following.
started venesection at 1200 first week dropped to 1000
after three further vs only went down to 952 very disappointed with this slow drop had two more vs in last fortnight
it it was my understanding that it would drop in average by 30-50 points so to drop just 48 over 3 vs kind of hit me hard tonight when told
at this rate dropping 16 per vs it's a very very long haul
appreciate that us rusty people are all different but anyone else have such a slow drop ?
thanks
0 likes, 1 reply
sheryl37154 tom_70042
Posted
It is beneficial to all if you stay on the same string where you started your communication, so that we know what you have already informed us, and what we have already responded.
I can only guess that you are receiving weekly vx. If so, and you are having 450-500mls drawn, then it is a very slow drop indeed.
It sounds like something else is going on, like an infection, inflammation, malignancy, etc. which is increasing your ferritin above what should have been your decrease. So you may have decreased your haemochromatosis ferritin but your inflammation ferritin has increased. This is usually temporary, unless you have something chronic.
It is reported that we drop 25 per vx, but it is not usually the case. We might start off with drops higher at the beginning and reduce the decrease as our ferritin decreases. Although 200 in one week was an extra large drop in ferritin. Mine took a month of weekly vx to decrease by 200. Then a decrease of 100 in the month of fortnightly vx.
Then an increase of 600 in one month when my test was done while I had a cold.
If you are homozygous C282Y, it is going to be a long haul anyway, in fact, forever. Although when de-ironed to <50 you will probably be put onto a maintenance of 3 monthly.