QUIT EXJADE DUE TO ALT - GOT LEVELS

Hi friends, I´m new in this site. I´m  D-B TI .I now don´t need tranfussions, I had a Hemolitic crisis in 2010 and after my splenectomy ferritin level is higher and higher (2700 ng/ml). The doctor try with EXJADE begining with 250 mg. (4/7) and 375 mg.(3/7) I quitted because alt =127 and GOT =83. I began with Desferrin 8/May/2013 with 1,5gr 3/7 days in 8 hours. On 27/May/2013 new blood control and ferritin had lowed to 2027ng/ml. The doctor continue with the same dose but in last control 12/June/2013 the ferritin raised again to 2260ng/ml and the dose was changed to 2 gr. My level of Hb. now  is 13,1.  I´m a bit confused with these Ferritin jumps because I had got no flu, pneumonia...
What can it be happening?The ferritin lows 700 ...after it rises 200.... I don´t know what I´m doing bad.
I also have fear to have Vitamin C suplements by a heart damage. I only have two kiwis during taking the Desferrin.

About Exjade I took it 1 hour before eating some food with the stomach empty in the early morning. Could it be the reason why ALT and GOT raised? I did it like it was shown in the instructions of Exjade.
Thanks a lo t for your support and any sugestions are welcome.

Hi Paco,

Have you ever had any MRI scans pf your heart or liver to determine iron load?

Are you alpha or beta thal?

I need to know these things before commenting.

Hi Andy, thanks a lot for your soon reply. I'm going to have a Ferriscan next month. I was made a heart eco 2 months algo and was all ok, no iron load in heart. I was diagnostic of delta-beta thalasemia intermediate when I was 9 and i haven't needed blood transfusión since i as 42 due to a hemolitic crisis . After splenotomic the iron as always around 2000- 2770.  My hb is now 13,1.
Thanks for the help¡
Paco.

Hi Paco,

Ferritin can vary a lot and you shouldn't be too concerned as long as you are chelating.  Ferritin can  be affected by inflammation in addition to infection, so it is not always predictable. If you were to start Exjade again, I would suggest splitting the dose into two and taking half a dose twice daily. This can help lower the Alt. Staying well hydrated can also help you control the liver levels.

Thanks again Andy for your son reply.

Today I have blood control and ferritin has dicreased:12/6/ Ferritin was 2260 and 02/07/ is 1980. GREAT!! GPT(ALT)= 74 U/L GOT(AST)= 67 U/L  I.S.T = 83,84 --> range 20-50  Hb.12,4g/dL. I continue with the same doses 2gr.  3/7. I begin having RED tea and soya ( according is said in T.I.F. publication of non-transfusión-dependent-thalassemia booklet). 15/7 Will have a RMI Ferriscan.
So, I will continue with Desferin, although it´s hard due to puntions, needless and carry the infusión pump, but more important is that the ALT and GOT levels are into range.

Any suggestion of how to improve the quelation with desferoxamide will be wellcome!
Thanks for your support!
Paco Lopez ... from Spain.

You should take 200-250 mg vitamin C when you begin the desferal. It will help to remove more iron. If you decide to try Exjade again, I gave give you some advice on how to take it, so your ALTs don't go up so much.

Andy can you please tell us what we can do so that the alts don't go up with Exjade.  My son is still having problems with his alts.    Thanks.

Thanks Andy always for your soon replies. I will do what you advice but I have kiwis instead vitamin C supplements. I have also red tea instead green tea... Is it the same ? Now, I think I will continue with Desferin. I don´t want to try Exjade if Desferin continues quelating OK.  Hope next blood control the ferritin continues dicreasing.
# Ama, about how to have Exjade to avoid increase of ALT and GOT, I think Andy could explain better than me.

Thanks a lot , Paco

Ama, splitting the dose into two and taking twice daily and staying well hydrated ALL the time can both help lower the liver scores. Activity raises the levels, so to get a true reading, have the test done as early as possible in the morning.

Paco, kiwis are great food. Excellent choice! I am not certain about the red tea, but if it is the tea form and not an herbal tea, it does have the same properties of green and black tea. In fact, red tea is made from black tea.

Andy, Once Again thanks for the reply!
One other doubt. On patients with intermediate thal. And no need of transfussions,
how do we have the iron overload... From red Cells distroyed or from gut absortion. I haven't
it clear.
Thanks, Paco.

In non-transfusing intermedia patients, excess iron is absorbed from the gut, as the body tries to produce more red blood cells. But what you said about the breakdown of RBC's is also true. RBC's are produced at a faster rate and are destroyed at a faster rate, and all the iron from these RBC's are released back into the blood.

Hi again friends! Bad news. In last blood control Ferritin raised to 2310. I cannot understand these jumps on the levels (2700-->2025-->2227--->1980--->2310)
I take 2 gr. Desferin 3/7 a week and now the doctor says to take 4/7 a week same dose. Is it enough dose for me? My weight is 63 kg.
The only good things she told me is that Hb. is 13,1 and IST (saturation index of ferritin) is lower than last control. Se said that it was important because there is less iron in blood and this iron has to be taken for other parts like liver.So, It´s the begining of removing it. I don´t know. What do you think? Comments and opinions are very wellcome!

Thanks, paco

Paco,

Taking desferal more frequently will help. 3 times weekly is not sufficient at this time. Your ferritin rise is not significant but it does show that your iron store isn't dropping much if at all. Increase the number of days you take desferal and see what happens. Because your Hb is staying high, you should not be absorbing much iron from diet, so you should see real progress with the higher desferal use.