Wish us luck !!

Hi everyone,

I wanted to give a little update,this time when Little Z went for transfusion,we gave sample for SGPT and it came back 40,Alhumdulillah close to normal,and her ferritin is decreasing too,it went from 1400 to 1261,its a very small decrease but i am still happy that it has started to decrease,she is on 600 mg Asunra,and we are sticking with the same dose,hopefully her ferritin will lower more .

Zaini.

Thanks Zaini for sharing the wonderful news, congratulaation dear

Keep it up, with love to you and little Z

manal

Zaini,

Thanks for sharing the good news.  Little A's SGPT had increased for a short duration and then returned to normal.  Once it was normal for a while, his exjade dose was increased to 1000 (5 X a week) and 625 (2 X week).  Soon after that, his ferritin decreased to 500.  Exjade requires a lot of patience, but once things are under control, it can reduce the ferritin to near normal levels.  I hope that will be the case for our lil Z very soon. 

Keep us posted!

Sharmin

Thanks friends

Sharmin,

How much exjade Lil A is taking right now ? since his ferritin is 500?

Zaini.

Hi Zaini
Glad to hear Lil Z`s SGPT levels are close to normal and her ferritin is on the decline.

maha

Thanks Maha .

Zaini.

Hi Zaini ,
Thanx for the super good update , i m glad to hear this .. may Lil-Z will do more fine with Exjade/Asunra ... May ALLAH (God) bless u, ur family n especially lil-z ..

Lots of best regards

Umair

Hi Zaini,

Lil A is still getting the same dose (1000mg/5 days a week) & (625mg/2X a week).  The reason for remaining on a high dose, despite having low iron levels is that we are keeping up with a less predictable transfusion requirement.  Although better than before, his hg requirement is still higher than most children. 

I think that lil Z will do even better, once her iron levels get down they will be maintained on a lower dose   It sounds like things are going in the right direction now. 

Sharmin

Thanks Umair and Sharmin

I hope soon her ferritin will be below 1000.

Zaini.

I hope soon her ferritin will be below 1000.

INSHA-ALLAH (("God willing")), zaini sis , Ferritin will come soon below 1000 ...

Umair

Lil A is still getting the same dose (1000mg/5 days a week) & (625mg/2X a week).  The reason for remaining on a high dose, despite having low iron levels is that we are keeping up with a less predictable transfusion requirement.  Although better than before, his hg requirement is still higher than most children. 

Why two different doses of Exjade in a week? Why not all week long 1000mg? The other thing I want to say is that Lil A and I are taking exactly the same dose. I too take 1000mg, but then every day. Is this dose not way too high for him? What interval of blood transfusion does he have?

Zaini,

I just love the picture you have of lil Z.  God bless our little princess. 

Dore,

Lil A is on a higher dose of exjade (approx 30mg/kg) in place of the combination therapy her was on.  He receives 20cc/kg of blood every 3 weeks - which is higher than the recommended 15cc/kg of blood every 4 weeks.  It is best at his age to stay ahead of iron accumulation, especially considering that his high tx frequency resulted in a little bit of iron overloading in 2008.  He will have a SQUID and T2* repeated in February.  By then we will also see if his tx frequency stabalizes in order to decide if his exjade dose needs to be adjusted.

The doc felt that it was best to give him a higher dose for 5 days, and a lower one for 2 days in order to reach what she felt was the best overall chelation for him.  I wonder what they will do when in February.  I would like to see his iron remain below 500, actually close to 100 if possible while he is growing. 

Perhaps you require a maintenace dose, while lil A requires a slightly more aggressive dose 

I hope that your chelation is going well

Sharmin

Thanks Sharmin,

It was eid day so she was reaallyyy happy

Zaini.

I hope that your chelation is going well

Well? It stays around 1000. I'd tx at friday and it was a bit under 1000 now. Things are very hectic here, no free day untill 5 December if not Christmas. My hgb remains to stay low. I think we finally have found a new hgb cyclus. (more about later) But I am getting restless again so maybe I try to reach the 500 before 2010. My Exjade tests are set up every 3 months now, so I will ask for an extra one before 2010. 

I must get it low quickly, because I must be able to tell all pkd people of the worldl that chelation really helps!

Zaini,

It is great to know that Litthle Z's ferritin is coming down. Her recent picture is very pretty. You are doing an awsome job managing her Thal.

Dore, it is wonderful to hear that you have lowered your ferritin so well....