Hello

Hi,

I have already started posting without saying a Hello to my friends here. Too bad. I am 44. E beta, transfused but still not able to maintain an Hb of 9 as advised. Go for transfusion every month but if somebody tells me to go for it every 3 or 2 weeks, I ll collapse here itself. Managing blood is very difficult. Last 2/3 months ferritin is also slipping out of control. So God ( I mean my friends here on thalpal) help me. love

Hi Rashmi,

Welcome to our group. We would like to know more about your struggle to keep your ferritin down.

Not doing anything much. Popping in the Kelfers regularly. Bought some green tea (something which I don't like at all) and hoping that it will come down. Next month I have an appointment with my specialist. My back is in very bad shape with nerve compression.Excruciating pain.Have to wait till next month. My local haematologist is not that experienced in dealing with thals.

 Kindly guide as to what precautions I need to take till I visit my specialist on July 7. Not feeling well at all.

Another thing Andy, I tend to forget my first dosage of Kelfer and many a times recently, it is getting repeated (I cannot afford to skip a dose). So instead of 1000 it becomes 2000 within say half an hour. Is it risky and whats need to be done? Such confusions are sometimes inevitable when we have to take so many oral medicines. Also need to know on Vitamin C, which I take as fresh lime. I take 3000 mg of Kelfer( body weight is 42). Do I need to increase it for sometime till my ferritin comes down to below 2000.

Welcome Rashmi,

I think it is a good idea to shorten your duration between transfusions until you begin catching up.  I would suggest maintaining your hemoglobin at 9.5 or above. 
Constant chelation will lower your iron levels, you may not see the results immediately but with patient, and the right dose you will get the results that you seek.
As Andy says, it would help us all to know more about your circumstances. 

Best,

Sharmin

Hi Rashmi,

Welcome to Thalpal!

-P.

Hi Rashmi,

Warm Welcome to Thal Pal Family.

Rashmi,

Your problems are complex. The extramedullary hematopoiesis is pressing on your spine and causing pain. EH is a direct result of low Hb levels over an extended period, so raising the pre-transfusion Hb is usually the first approach. Hydroxyurea is also often used to slow down erythropoiesis and potentially also raise the Hb level. Radiation and surgery are also used but more as last resorts. You have explained that more frequent transfusion will be a hardship. So, I would suggest sticking with the hydroxyurea for at least one year to see if it brings relief. If this does not work, then there may be no choice but to increase transfusion frequency, as the other options are last resorts.