Wish us luck !!

Thanks Abbas,

We are planning to recheck her SGPT on coming friday or saturday,we'll see what happens next.

Zaini,

You can try giving her a few days off to see if it lowers the levels a bit. The SGPT (ALT) level is also affected by hemolysis, so it isn't automatically just the Exjade raising the level. Is there any possibility of her taking desferal a couple times per week along with Exjade until her ferritin gets down below 1000?

The Ferriprox/desferal combination should also be considered if Exjade proves unsuitable. There are many possible combinations using the two drugs. 5 days Ferriprox and two days desferal is one that many find easy to follow.

Andy,

Thanks for your reply,Last time when her levels were elevated,and they were somewhere in between 200 and 300,we stopped Asunra and the levels did come down below 100,after that it came down till 40 and then started rising again,first 80 and now 145.

I am ready to try two days desferal and 5 days Asunra,it would be more economical for us too,but her doctor is not ready to do that,sometimes i think about giving it a try with out her consent,but then i get confused should i do that .

Zaini .

 Zaini,

I do not think Asurna is a good idea any more. If this raise happens to me - twice -  after I start it,  I will  certainly drop the case.


Lena.

Lena,

I know what you mean,i am just desperately hoping that the situation will get better,and i am thinking seriously about two days desferal and 5 days Asunra program,although Z's doctor may not allow it but i know other doctors here who are following this,and i know doing this with out her doctor's consent might aggravate her doctor,but desperate times call for desperate measures.

Zaini.

Zaini,

I am sorry to insist on this - I know you don't want to leave Asurna and I fully understand your point of view - but I believe that even with 5 days of Asurna things will be the same.That is my personal opinion, of course. It is up to you and your doctor to find the best solution for Zainab.

I am curious though : why ferriprox is not a choice for you at all?

Hoping for the best,
Lena.

Salaam Zaini,

Our youngest  ALT shot up to 302 six years ago (6 years old then). His ferritin was also very high, 2781. We were told that it could be a viral thing and they would keep an eye on it. The 'viral thing' went on for three years before the reading for ALT began to decline. There was no investigation. 
Now his ALT suddenly went up again.  It was 20 last month but now is 132.  He has been a bit
flu(ish) lately.  His ferritin has gone up too from 517 - 608 - 839.  Again we are told the same thing. 
Our little ones blood intake has been increased because his pre tx Hb was dropping to below 9.0 and the ALT reading and ferritin has gone up from that exact time.  Maybe it is because of this that his readings have gone up.  I asked his Doc to put him on combi of desferal+ferriprox because he also has mild liver and heart iron and because of this but his Doc is insisting on keeping him on just ferriprox because Doc says the iron levels are not severe.  We will wait to see what his readings are the next time and if no decline in levels then inshaAllah, i will push for combi.
I agree with Lena on combination of ferriprox and desferal...i too think this is a stronger more efficient form of treatment.

Luv,
Emby     

An increase in ALT that corresponds with an increase in transfusion requirement would most likely be due to the hemolysis taking place that is destroying red blood cells, which is the reason behind the increased transfusion requirement. Most likely, this has nothing to do with the chelator in this case, whereas, with Zainab, I don't believe there has been any increase in transfusion requirement. This leaves Exjade as the most likely reason for the increase in ALT.

Emby, keep an eye on the ferritin readings. It is possible for ferritin to fluctuate without and increase in iron load, as all infections will raise the serum ferritin level, so Ferriprox alone may be enough, but if the level continues to increase, adding desferal a couple days a week will get the level back down. Every study has shown the Ferriprox/desferal combo to have the best chelation effect.

I asked his Doc to put him on combi of desferal+ferriprox because he also has mild liver and heart iron and because of this but his Doc is insisting on keeping him on just ferriprox because Doc says the iron levels are not severe.
     

Emby,

I really do not understand those doctors who say only ferriprox. I have been on ferriprox alone for one year, due to low ferritin level (45) and my next MRI showed a light increase on liver iron, due to my being only on ferriprox.
This is a clearcut thing: combination is far the best. Ferriprox is specialised on heart and desferal or exjade on liver. Cut and dry. Any doctor who does not understand this is a fool. And what's that about  "mild liver and heart iron"? In our Unit most of us have T2* heart and liver 40. Do you know what 40 means? Perfectly clean heart and liver. 100%. Do you know what we do? Never abort our chelation therapy. Mostly combination therapy. Sorry, but it's getting on my nerves when doctors are a drawback on their patients' improvement.

As Andy said, please check up on next readings and act accordingly.

Lena.

Lena,

As you said you understand why i am trying to cling to Asunra,when Z was on combi therapy of desferal and ferriprox,we did at least 5 days of desferal,and her ferritin level when she started Asunra was 1400,meaning combi therapy definitely worked for her,but i am just not sure if only two days desferal would work,if we start combination therapy again,i guess we'll have to go back on five days a week again.

Emby thanks for your input  Z did have flu in last few weeks,i am not sure whats causing this raise in numbers.

Andy,

I am sorry but i didn't mention that Z's last two transfusions were on three weeks rather then four weeks,which is her ususal routine,as far as i remember first time it was because of fever and and next we took three weeks appointment to cover it,and before the recent transfusion on 12th december,her pre tx hb was 9.8,so we took 4 weeks appointment this time,but her last two transfusions had a little less interval then usual.

We'll recheck her SGPT and if its low we might give Asunra one more shot,or may be not,i am not very clear on that right now,thanks for every post guys  .

Zaini,

 Zaini,

 I agree with you - with ferritin above 1000 two days of desferal are not enough. Of course, the four weeks' transfusion interval is a very good thing as Z is not getting so much blood. I am sure you will find the best solution for Z.

Lena.

Zaini,

The increased transfusion regimen could raise the SGPT level if it is because of hemolysis. This is common and may have to do with the particular batches of blood not lasting quite as long as usual. I wouldn't be too concerned at this point, unless it continues.

Thanks Lena and Andy,

I don't know why,may be i am assuming but i feel like her reading will be low in recheck,as the same happened last time,may be i am just hopeful .

Zaini.

I hope the same Zaini

manal

Thanks Manal Everyone please remember us in your prayers .

Zaini.