My Iron Reports & Further Questions.

Hi Andy,

My transfusion is scheduled tomorrow so as usual, I got tests done today, again.

First let me give a clear view of my situation & doses.

I transfuse every 20-21 days having blood quantity of 450-550 CC. Then as per my weight, I take Asunra (Exjade) 1600 mg/day.

As per your advice and seeing many other's nice comments about splitting the dose, I too did it on around April 28, 2012; 800 mg in morning and 400 mg in evening. Then after 3-4 days, I had transfusion planned on 3rd May, so I got tests done on 2nd May.

Here are constant updated reports:

2nd May: 6178.

25th May: 5982.

June 30: 6042.

August 11, 2012 5746.

22nd September, 2012: 5354.

3rd October, 2012: 4456.

14 December, 2012: 5800.

08 March, 2013: 5417.

17 April, 2013: 4756.

Current: 26 August, 2013: 4300


So, I heard in some posts, that every transfusion of around 450 CC deposits around 500 or similar levels of iron deposition.

So should I wait and continue for results of this or I should opt for Desferal + Kelfer (Defriprone) ?

-Pratik.

What is your current weight?

Weight is 42 or 43 I believe. Would it be safe is to increase 200 or 300 mg more?

-Pratik.

Pratik,

Your daily dose should be a minimum of 1400 mg. The maximum dose at 43 kg would be 1720 mg daily. This is a dose of 40 mg/kg and this is used for patients with high iron loads. If you can tolerate the dose, I would suggest at least 1600 mg daily, so that you can see some real progress. If that doesn't reduce your iron load, then switching to combination therapy with desferal and Kelfer is recommended.

Hi Andy,

Some updates & success as well.

Before an year, I believe, my weight went to around 35-36 kgs I believe, and no matter how much I eat, it didn't use to rise. Then I started being active, eating good, sleeping a little more than usual and my weight has increased very nice.


I am happy to gain weight after long efforts. I would now start exercises again as well to make sure my belly doesn't grow more, lol.

Also Andy, you're dose splitting advice was marvelous. My SGPT levels used to stay around 95-100 or above always despite of taking medicine, and since I started splitting dose (1 month from now), when I got the reports done on 25th May, to my wonder, my SGPT levels were dropped to 62 and this time, NO MEDICATIONS were taken to reduce SGPT. :D


And I plan to continue exjade for more 5-6 months and see the results as I've started taking split doses (and exjade in plastic glass stirred with plastic spoon!) and I guess it would be my best bet & worth to watch results.

Cheers.

Hi Andy,

Just came here to update some info from my last results of 3 days back when my transfusion was conducted. This time, I did not got checked ferritin (would do next time, i.e. after 2 weeks).

My Vitamin D levels is: 28.10 . It's good but I am planning to make a goal of at least 40 for good bones.

Next, splitting dose is the most genius advice I ever saw, thank you, thank you very much. My SGPT used to stay and linger around 100 or between 100-110. Guess what, this time it was 28 even while I was taking split dose of 800 in morning and 800 in evening, that is, making a total of 1600 mg. In middle, I made 1200 again for 2 days due to some heart burn to eradicate the Exjade possibility out. Now am again on 1600. Though am experiencing some joint pain and bone pain but that might be a temporary issue.

Again, I wanted to ask about the heart and liver concentrated iron tests,

How is heart's iron test done? Through MRI or through blood? What's exact terminology for it?

And what's liver iron's test called? It's done through MRI, correct?

Please let me know ASAP so I could get them done next time before my transfusion.

Also could you list the normal values for both of the above tests? Thanks.

Thanks and love Thalpal!

Hi Pratik,

Thanks for the feedback. We are getting excellent reports from patients splitting the Exjade dose. ALTs are under control and ferritin drops faster. Novartis should pay us millions for developing this strategy, but I am sure that will never happen.

For liver MRI results, this table is from Ferriscan.

The Sensitivity and Specificity of liver R2 for biopsy LIC prediction1
LIC threshold, Clinical relevance Sensitivity (95% Specificity (95% Area under
Mg Fe/g dry weight confidence limits) confidence limits) ROC plot
(SE) ('mol Fe/g dry weight)
1.8 (32) Upper 95% of normal 0.94 (0.86-0.97) 1.00 (0.88-1.00) 0.991 (0.008)
3.2 (57) Suggested lower limit of 0.94 (0.85-0.98) 1.00 (0.91-1.00) 0.988 (0.010)
optimal range for LICs for chelation therapy in transfusional Fe overload3
7.0 (125) Suggested upper limit of 0.89 (0.79-0.95) 0.96 (0.86-0.99) 0.991 (0.009)
optimal range for LICs for transfusional Fe overload and threshold for increased risk of iron-overload complications3
15.0 (269) Threshold for greatly 0.85 (0.70-0.94) 0.92 (0.83-0.96) 0.982 (0.0016)
increased risk for cardiac disease and early death in patients with transfusional iron overload.

For cardiac T2*.
Over 20 ms is considered the acceptable level.
Between 10-20 ms intensive chelation to remove cardiac iron is recommended.
Below 10 ms is severe iron loading and maximum chelation is recommended.

Hi Pratik,
Nice to see you after many days
Congratulations for reducing SGPT through splitting the dose of Asunra.
T2* MRI is available in Ahmedabad, Dr Narendra Patel, SRL diagnostic, some concession available for thal major. tell me when u need details.
whether it is available in surat or not?
Dharmesh.

Hi Andy,

Thanks for the reply. Still little confused about the liver norms. What levels out of which you bold-ed are considered as normal (talking about liver levels) ?

Dharmesh,

Hi buddy, nice to see you after so many days as well. Earlier in 2009, I got my DEXA/Bone desitometry test in Ahmadabad as well so maybe this scan is done there as well. You went to Ahmadabad specially for these MRI tests?

Oh and I live in Baroda, not Surat.

I hope it's available here in Baroda otherwise I'll specially have to conduct a trip to Ahmadabad, I'll ask dad to investigate here. But please give me the details, just in case it's isn't available here.

Regards.

Liver values should be kept below 7 and ideally lower.

Hi Andy,

Thanks for the reply. Still little confused about the liver norms. What levels out of which you bold-ed are considered as normal (talking about liver levels) ?

Dharmesh,

Hi buddy, nice to see you after so many days as well. Earlier in 2009, I got my DEXA/Bone desitometry test in Ahmadabad as well so maybe this scan is done there as well. You went to Ahmadabad specially for these MRI tests?

Oh and I live in Baroda, not Surat.

I hope it's available here in Baroda otherwise I'll specially have to conduct a trip to Ahmadabad, I'll ask dad to investigate here. But please give me the details, just in case it's isn't available here.

Regards.

Hi Pratik,
There are only three centre where this MRI T2* is available, I went A'bad for reporting. (The Problem with the report is the software which require to perform the test. and machines are available in many cities of Guj.)
1. Delhi, 2.Mumbai, 3. Ahmedabad
In Ahmedabad,
X-ray house , Dr Narendra Patel, (Dr Sanjiv Patel)
And Vadodara is not much far from Ahmedabad, This test require only 30 minutes. Dexa scan may be available in your city.
Just call me when u need more details.
sending  u PM
Dharmesh.

Hi Andy,

I have just came here to update my IRON levels. Well, I was taking 1600 mg (split dose. 800 mg in morning and 800 in evening). Since past 1 day, I have now again switched to 1200 mg from 1600 to eliminate heart pain possibility (which is most likely not due to Exjade).

33 days back, my IRON levels were 5982.

Now as per yesterday's result, it's 6042.

So there is only increase of 60, not more. My question is, can this be considered as decrease in iron levels actually? Because probably the iron may have just been thrown out into blood stream and the iron levels maybe slightly higher.

Regards.

When a high iron load exists in the organs, Exjade will remove that iron first. Meanwhile, progress will not be reflected in ferritin readings. This is one more reason the annual scans are necessary, so that the true progress can be measured, and corrections to the chelation program can be made if needed. I have seen this since the first Exjade trials. Ferritin readings increased for over a year in my friend while her knowledgeable doctor told her don't worry. In the second year, her ferritin readings finally dropped and kept dropping until her iron was under control. Patience and compliance are required.

Sure Andy, thanks. But I am taking Exjade since start of it, since May 2008. Well, in May 2009, the ferritin levels were around 3300 and I was bewildered how it increased after that, not sure.

But now the major goal is chelating, so yes I would be all focused over it and following all the advice that could help me reducing the iron overload. Am gonna get T2 done within 25 days and would report where I stand at.

Thanks,

Pratik.

Hey Pratik,
Chalo aapne sharat marie ke-
konu ferritin pahela ghate?
taru ke maru? ha ha.
Dharmesh.