Wish us luck !!

Zaini,

I am glad that her SGPT levels are in the normal range now.  Once again the advise we have gained here has been most helpful.  I hope that lil Z's ferritin levels decrease significantly soon.  Do you find that she gets a tummy ache from the exjade?  Lil A complains of tummy problems due to exjade, especially first thing in the morning.  Does it get better when you split the dose?

Please give my love to my lil Z

Sharmin

I want to add that splitting the dose will ensure 24 hour chelation, which is something that is not happening with most patients who take Exjade just once daily. Actual use has not shown the 24 hour coverage that was hoped for in many patients.

Sharmin,

Thanks a lot  Tummy ache does get better after splitting the dose,it doesn't totally vanish,but it gets better and less frequent.I have increased her dose to 700 mg on alternate days,we'll see whats her next SGPT is and then increase the dose permanently.

Zaini.

Zaini,

I just wanted to get back to you. I haven't been well and get behind at times. Yes, alternating doses is an accepted method for ensuring the proper dosing is achieved.

Thanks Andy,

Be well and take your time i hope the increase in dosage will bring her ferritin down.

Zaini.

As for splitting the dose. I have done that and I am glad to tell you that I am back on 1500mg. I have not read all post since I am very tired and in pain (study means pc thse days) I am a bit (and more) frustrated that with 1000-1500mg over the last 6 months my ferritin remains stable around 600. Yes, everyone tells me it is good. And, yes I know I have dreamt about such levels for a long time, but I do not want to be stuck for 6 months.

Owh, Zaini you talk about alternative days. Could you tell me more about that? How looks little Z's scheme of Exjade?

Dore
PS this means I take again 40mg/kg

Hi Dore,

We give Lil Z 700 mg on one day and then 600 mg on the next day,in split doses of course,after 3 weeks of following this pattern her SGPT came back 31,which is a lil bit higher then last time,when it was 23,but its still in range,so we will follow the same pattern for another four weeks and then after checking her SGPT,we'll decide if she can take 700 mg on daily basis.

Her ferritin is 1168,i am not happy with these numbers,but i have to be patient ,no other choice,i shared my concern over her ferritin last time with her doctor and he said "on 1100 you should be celebrating,i am more worried about kids who have ferritin of 5-6000".

Well i won't be happy until she reaches 500.

Zaini.

Zaini,

anyone should look at the best and not at the worst, let alone doctors(although I understand his/her concern).

Lena.

You are totally right Lena .

Hi Friends,

An update here,and a good one too Z's ferritin is now below 1000 finally Very slightly though,its 918,but i am taking this as a good sign,along with SGPT which last time was 22,she is taking 700 mg Asunra right now,and i guess its doing something,coz her last ferritin reading was 1168,i hope our patience with Asunra is finally paying off.

And one more thing,we couldn't have done it with out your support and Andy's guidance  .

Zaini.

Glad to hear that, Zaini. 918 is pretty good and of course, the lower the better.

I have concluded - and apply this to myself - that 200 must be the limit. I think this must be the highest  "maintenance ferritin level" and once you have brought it down, your effort must be to keep it up to 200. Of course, this is only my personal conclusion of what is a safe enough ferritin  level...

Lena.

Zaini,

I am so glad to hear that!!  Prior to hearing this news I was going to suggest that you discuss exjade/desferal combination with your doctor - as many patients here are now on the combination with great results. 

In lil z's case - it seems like things are going very well:)

Sharmin

Thanks Lena and Sharmin,

Lena,

I agree with you,i hope Z will reach that mark soon,we know that Lil A is around 500,i am curious if any other kid is around 200.

Zaini.

Great news Zaini....Now little E's ferritin is around 500. In Boston, when One of the kids ferritin went below 400, the heamo lowered exjade dose. he didnot want the ferritin to go to low. Do not if it has anything to do with other minerals getting chelated.

Bostonian,

Great news for Lil E,looks like Z has a hard competition I am so happy for Lil E  Z is on 700 mg right now.

Zaini.