high ferritin level

Komal,

What were you doing for chelation before the 2 days you have been using desferal? You need to be taking desferal 7 days per week right now. If you want to take Asunra also, please talk to your doctor about the combination so that you can be properly monitored. I cannot advise on the combination unless your doctor is aware of what you are taking.

Komal,

Take desferal 7 days a week. You must be on aggressive desferal scheme right now - whether along with Asunra or not, it does not matter. Normally you should be on desferal-ferriprox combination therapy and on high doses. But as long as you are unable to take ferriprox ( I can't remember why but it does not matter), cling to desferal 7 days a week. The dose will be arranged by your doctor but in no case should it be too  low.

Lena.

Andy,
    Two  days  before  I  was  taking  Asunra.Am  using  6 vials  of  desfersl  at  a time.I  asked  my  doctor  he decided    the  combination  of Desferal+Asunra  combination.Please  explain  what  I have   to  monitor???Do  you  think  it  is safe  combination?
 
Lena,
  I  take  desferal  very  slowly  each  session  goes  over  24hrs.during  chelation   I  faced  abdominal  pain  and  headache.
Komal

Komal,

What program has your doctor given you for taking Asunra and desferal together? How many days per week of desferal and how much Asunra daily?

Andy,
   My  doctor  did  not  give  any  program  about  Asunra  and  desferal  he  just  said  use  single  chelator  at  a  time.Do  not  take  together am  taking  1200mg  Asunra.So  please  guide  me    to  make   plan   for a   month.I  will  discuss  it  with  doctor.
Komal

Komal,

If your doctor doesn't agree, you should go along with what the doctor says, because the doctor needs to monitor you regularly for creatinine levels and must also run regular liver function tests. You are on a high dose of Asunra, so perhaps you should just take 1200 mg daily and see how well it works for you. In one month you can check to see if your ferritin is dropping. If it does, then continue with Asunra. If it doesn't drop, I would highly recommend switching to desferal 7 days per week until your iron levels get down into a safer range.

HI  Andy
     Week  before  I gave  blood  sample  for  these  tests.Am  sending  you  the  results  kindly  check  them.I  receive  them  today.KOMAL



TESTS                                RESULTS                                     NORMAL  RANGES

                                                     
1-Glucose  (Random)         86 mg%                                            Up  to  180   
 

2-Alkaline Phosphatase       334U/L                                          98--279         


3-Calcium                        8.3mg%                                          9--11

4-Phosphorus                  4.9mg%                                         2.5--4.5


 
                                  SPECIAL  CHEMISTRY



TESTS                              RESULT                UNIT         REFERENCE   RANGE

5-Magnesium (serum)           1.69                   mg/dl            1.3-2.5             
                                             
6-Vit  D3                           23.86                  ng/ml          <20 deficient
                                                                                    21-29 Insufficient
                                                                                    >30 Normal 
                                                                                   >150 Intoxication
       

still 900. Next result I will get tomorrow. I also get tomorrow an extra bag because of my vacation. So I dont think I will check it before May again. I'll let you know.

Good luck with all your stuff Komal!  ( I dont know of it is bad, i dont think so, but I am an egghead on  this piece of lab world).

Komal,

The only comment I have about these tests is that your vitamin D level is low and it is important to correct it. You need to either get some regular daily sunshine or you can take vitamin D supplements. I would suggest 2000-5000 IU daily until your D level gets above 30. Vitamin D is necessary so that many other nutrients can be properly used by the body and interestingly, thal majors with high vitamin D levels have lower levels of iron in their hearts.

Whooohooo! It's only 509!!

Dori,

I suppose this is your fe count! Good for you! Exjade works, doesn't it?

Lena.

ANDY,
    Am  feeling  pain  in  my  shoulder  and  elbow  joint  since  3  days,I  feel  the  medicines  and    the  dosage  am  taking  is  sufficient.
Vit D  one  tablet  of  0.025mcg  and  one  tablet    of  Osnate  (Ossein Mineral Complex) of  800mg.It  has  calcium+mineral.
Please   guide  me  should I  replace  them  with  any  other   brand   like  Osteocare   and  Centrum Silver????Also  mention  the  correct    dosage  my  weight  is  32kg.
Komal

Si, my fe. Despite those side effects Exjade still does its real job too.

Hi Komal,

I don't understand the vitamin D dosage. It is almost nothing.

http://dietarysupplementdatabase.usda.nih.gov/faq.html

Vitamin D: 1 IU is the biological equivalent of 0.025 µg cholecalciferol/ergocalciferol

You need to be taking much more than 1 IU of D daily. My own experience and observation of others and also after talking to a top thalassemia doctor, is that you need at least 2000 IU of vitamin D daily to correct deficiency. I take 5000 daily and it makes a big difference. For you weight, I would suggest 2000 IU daily minimum. If further testing shows you are still deficient, take a higher dose. I also think Osteocare is a superior supplement to Osnate. Osteocare has a better balance of minerals. I find Osnate particularly lacking in magnesium. Centrum Silver is also a good multi-vitamin, so if you do have access to these, switching would be a good choice.

Joint pain is a side effect of Exjade (Asunra) in some people. As long as you can tolerate the pain, you should not stop Asunra. If the pain gets to be too much, stop Asunra for a few days and see if it feels better.

Hi  Andy
       Today  I  went  to  hematologist   to  show  my   reports,about  Vit  D  he  did  not  increase  the  dosage.Right  now  am  taking  0.25mcg  tab   of  One Alpha  Leo  daily.
Again  I  have  bruises on  thigh   so  he  stops  Asunra   for  5  days  and  prescribed  2  other  test  P.T  and  APPT.Today   Platelet  count  is  28  and  Hb  is  11.1.Am  using  citrus  in  my  diet  for  bruises.
Need  your  comments.
Komal