Maintenance therapy
Posted , 6 users are following.
Wanting to hear from others with original test results similar to mine:
Ferritin 1000, elevated T sat, homozygous C282Y, no inflammation or damage
my ferritin levels have been reducing fairly quickly and am tolerating vnx quite well
my question...when your levels reduced to <100....what kind of maintenance therapy did you require? Some literature indicates maintenance therapy may not be necessary, and that some
individuals...particularly females do not continue to load iron. Anyone fortunate enough to experience this?
0 likes, 3 replies
joyce1959 jax15282
Posted
Hi Jax
I was at 950 on diagnosis 95% tsat and maintain my levels by vs every 8 weeks to keep them near 50 fe 50 tsat %. I dont really have the joint pain, but suffer with depression and a heart arrythymia. I am tired everyday but that maybe attributed to depression.
Im 61 and live in northern England.
lynnsk1 jax15282
Posted
hi , 3 years ago i was almost 2000 & 98%. my liver was loaded too ,now stable) i had weekly vs and am in maintenance now 15 & 49% from memory, i am dye a blood test. my joints have suffered most of my life before diagnosis-when i was 60 but ive always been into sports and fitness. i had a hip resurfaced 10-15yrs ago and recently had some knuckles replaced. once loaded and joints effected theres nothing they can do to cure but hopefully wont get worse. unfortunately once it attacks eg the fluid/cartiledge in the joints it just ests awsy hence my knuckle replacements. my wrists and tops if my feet are effected abd my neck but i still get on with everything even though wuite oainful at times. i dont take any pills whatsoever and i drink no alcohol which is gard st tomes for celebrations. my 2 sons dont have symptoms but are carriers. i am also Homozygous C282Y
jax15282 lynnsk1
Posted
thx for response. I see your ferritin was very high when you were diagnosed,
did you have any organ damage?