Unrelated Bone Marrow Transplant.

Hi Omega,

What dose of exjade is your daughter taking and what is her body weight?

Hello Andy

My daughter is taking 500mg tablet per day. Her weight is around 25 kg and hence is 20mg / kg. Exjade has reduce her ferritin initially from 2480 to 1696 in 6 weeks' time but the ferritin level stays at around the same level the following 5 weeks. we are just wondering what could be the possible causes. We are reluctant to increase the doses because the drug is very costly here and we are going the perform blood-letting in april this year.

Thank you.

The exjade dose would probably have to be 30 mg/kg to cause a faster change. I don't think you should be concerned at all, since she will be starting blood-letting. What I have been told by a woman who had a BMT over 10 years ago is that you shouldn't take a lot of blood at one time, as it will cause too much bone marrow activity if the Hb drops low, which will cause excess iron absorption from food.

Thank you Andy.

The doctor recommended 20 mg/kg because my daughter is the only one who is taking Exjade in our area. What puzzled me is why the ferritin dropped so fast during the first 6 weeks and then stayed at the same level the following 5 weeks. I know someone who has undergone a BMT 10 years ago still having a ferritin of about 1000 now.

The doctor recommended 200ml of blood would be taken once every 2 weeks. We are thinking to do it once a month. the first session would start on 14-4-2008 together with the re-vaccination.

Thank you.

Hi Omega!

Like Andy said that S.F is not an accurate measure of Iron in body compared to an MRI or Ferriscan etc. So it is possible that initial drop of S.F made room for more S.F to be mobilised from the organs to the Blood stream and that could have resulted in higher S.F reading than expected. This is something like I've been experiencing with Desferal. My S.F has actually gone UP ever since I started taking more desferal than I had been taking previously.

So, I'd recommend you compare her MRI rather than S.F to see if Exjade is actually unloading Iron from the organs.

Best of luck for her future

Thank you Sajid.

I am confident her ferritin level will drop since she is not transfusion dependant anymore. But I hope the level will come down soon. We might try L1 in the next new months, but it's all depends on what will outcome we will be getting.

Thank you.

Best Regards

Omega.

Omega,

I am so glad to see that your daughter is recovered well from the BMT. her ferritin will surely and steadily lower with Exjade and blood letting. For Ferritin, you should never look at onr or two readings to determine if it is lower. You need to look at a long time trend to see that overall it is trending downwards. After reading the entire post, I salute you and your family for the perseverance and determination to make your daughter free of transfusion, free of Thalassemia. Hats off to you ! 

Hello Everyone

Greetings from Malaysia.

My daughter's latest blood test result:

Hb 12.2
WBC 9300
Platelet 143000
ALT 41
Ferritin 1398 (Initial level 2480 in Nov 2007).

She is taking the 5th box of 500mg Exjade for the moment and her dose is 20mg/kg, hence 1 500mg tablet daily.

She has stopped Cellcept, the last anti GVHD drug on 17 March 2008. She is only on IVIG and Bactrim now.

She will be seeing the doctor on 14 Apr 2008. I will keep all of you updated.

Best Regards

Omega.

Hi Omega,

Best of luck, i am happy that your daughter is doing so well.

ZAINI.

You can not imagine, how happy i am for you and your daughter, best of luck always.Please Omega, always update us

Manal

Dear All

My daughter went for the IVIG infusion yesterday and also and full blood count. Her hb was 13, WBC 6200 and platelet of 156,000. Everything else were within the normal range. Her ferritin was 971, down from 2480 about 5 months ago with Exjade. We have another box of Exjade to go, and we might stop Exjade and go for monthly blood letting to bring the ferritin down to the normal range. It's quite a heavy financial burden to consume Exjade here. We will be seeing the doctor in a weeks' time and hope we can go as per plan.

Thank you.

Regards
omega.

Her ferritin was 971, down from 2480 about 5 months ago with Exjade.

Wow, that's quite an achievement!

Best wishes for the future.

Thank you Sajid.

We started Exjade on 28-11-2007, to be exact, it's about 4 months. It's dropping because there is not more transfusion. By mid May, she should complete the sixth box and we will see what's the ferritin level by then.

Thank you.

Best Regards

omega

Hi Everyone,

We are back from SJMC for the routine check up My daughter will be starting her first Blood-Letting tomorrow. The doctor recommended once every 2 weeks, 200ml will be taken out each time and glucose will be IV over a period of 4 hour during each session. We are still considering whether to have the Blood Letting once every 2 weeks or once a month. Any advice?

We have also stopped Exjade because, according to the doctor, Exjade should not be taken for ferritin level below 1000(my daughter's ferritin level was is 971, 2 weeks ago) because of possible side effects. Any comment?

Vaccination will also be started tomorrow but at the moment live vaccines such as polio and MMR can not be given to her yet.

Thank you.

Best Regards

omega

hi omega,

im from maldives, but i have been living in malaysia for the past 3 years for studies... i havent been arnd much in this site and i just saw ure post.. i am so glad that ure daughter is doing fine after bonemarrow:)

i too go to SJMC for transfusion.. i just wish i saw this earlier, so i cud have visited you when i went there.. am glad that everything is turning out great..

i would like to knw, why is blood-letting is done after bmt?