Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Pratik on May 25, 2012, 07:02:34 PM
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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.
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What is your current weight?
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Weight is 42 or 43 I believe. Would it be safe is to increase 200 or 300 mg more?
-Pratik.
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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.
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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.
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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!
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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.
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Hi Pratik,
Nice to see you after many days :hugfriend
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.
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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.
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Liver values should be kept below 7 and ideally lower.
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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 :hugfriend
Dharmesh.
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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.
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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.
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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.
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Hey Pratik,
Chalo aapne sharat marie ke-
konu ferritin pahela ghate?
taru ke maru? ha ha. :wink
Dharmesh.
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Hi everybody and Andy,
Updates: As of August 11, 2012 my ferritin level is 5746. On June 30, my ferritin was 6042, so in total around 296 reduction is seen in the ferritin levels since the last report which I think is very good.
I've been taking 1200 mg Exjade (Asunra) ever since June 30 and now I'm planning to switch over to 1600 again from tomorrow for more better results.
Things I've been following or doing to achieve this:
1. Split dosage, 800 mg in morning and 400 mg in evening. (This point cannot be stressed enough!)
2. Taking 800 morning dosage with Lemon juice (Vitamin C) to enhance chelation effect.
3. Taking Exjade in glass made cup/glass and stirring it with a plastic teaspoon instead of metal one.
Andy, one question, my SGPT is 80 or 81, would that be fine to take 1600 mg with this level? I am taking HepaMerz meanwhile so it doesn't increase my SGPT for a meanwhile.
Finally after years, I feel now my chelation levels are actually STABLE and not fluctuating like anything, I mean, see it, 5982, 6042 and now 5746 otherwise in past in one time I could have 5000 and the very next report claimed 8000, but it's now VERY STABLE!
I think I am on correct path and I hope to achieve good chelation effects and bring my iron levels near to 1500 in an year or so!
Meanwhile I also think that Vitamin C is enhancing or doing its bit to help get the most out of the chelator, so I recommend everyone to take Asunra/Exjade with lemon juice, if possible, and most important, SPLIT THE DOSE!
Thank you. :)
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The SGPT or ALT of 80 is slightly high but Exjade/Asunra is not stopped unless the level is 5 times normal. I suggest continuing to split the dose, stay well hydrated and get your liver function tests done early in the morning if possible, as activity causes the level to increase. An early morning test will give a truer picture of your level. Stay well hydrated.
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The SGPT or ALT of 80 is slightly high but Exjade?Asunra is not stopped unless the level is 5 times normal. I suggest continuing to split the dose, stay well hydrated and get your liver function tests done early in the morning if possible, as activity causes the level to increase. An early morning test will give a truer picture of your level. Stay well hydrated.
No Andy, I DID NOT stopped, I just reduced the dosage from 1600 to 1200 around 30 days back but I would be starting to continue 1600 from tomorrow.
And yes, the SGPT and all tests were of early morning fasting (no meals taken, the path comes directly to my house, I wake up and he takes the blood sample), so that is all done just after I am awaken.
I do stay very well hydrated (I've mentioned in many posts how I am a die hard water lover :P).
Cheers,
P.
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Just keep monitoring as required. Many patients shows increased LFTs when using Exjade, but usually it is not a problem. Consuming healthy herbs like turmeric (curcumin) and nigella will also help your liver function.
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Alright, thank you Andy. :)
I'll be getting T2 done this week most probably.
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Hey guys, I'm back with more updates of mine regarding iron reports.
Updates: 22nd September, 2012: 5354.
And on August 11, 2012, it was 5746.
That means a direct decrease of 392 in 41 days.
Since past 1 and half month, I've switched to Asunra 1600mg instead of 1200 and following aggressive chelation plan (max as possible).
The reports are now actually pretty stable and as well all know, iron reports including mine were mess and fluctuated a lot. But ever since I adopted some strategies, a constant decrease is being seen.
What I've been doing to achieve this:
1. Splitting dosage of Asunra (most important). For example, I take 800 in morning and other 800 in evening to achieve 24 hour chelation goal.
2. In morning, I take Asunra with orange juice (Vitamin C) as the recent research shows Vitmin C helps in removing free iron.
So when I was taking 1200mg/day, my iron decreased around 300 every 41 days (check my main post of my early reports since May) and my assumption was correct. Each 400mg tablet removes around 100 units of iron excluding other iron transfused by blood transfusions (450-500 CC every 21 days) on a time span of 42 days. So when I switched to 1600, it removed around 400 (392), hence my calculation was actually pretty correct. I transfuse 450-500 CC blood every 21 days, if anyone of you may wonder.
So, even if my iron is getting reduced on a scale of 392/41 days, within a year, I would be around 1800-2000 if it works as expected (which it is as of now, at least). Because I take Asunra ever since it's start (May 2008) but it never did a constant decrease like this, hence why I've got my hopes high this time and I really wish I conquer this fight.
Thank you Thalpal, Andy, everyone for making me achieve what I'm achieving today. This is the best chelation plan I could ever have had.
-P.
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Pratik - Very glad to hear this chelation plan is working for you. This shows that with a better management and hard work you can achieve excellent results.
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So true Narendra. :)
-P.
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Hi Pratik,
It's very good to see reduction in Fe.
Keep Chelating. :biggrin
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Pratik,
Good progress. As it continues to drop and reach lower levels, you will notice that your ferritin will drop more quickly. This is a result of cleaning your organs of iron. As the tissue iron load drops, the ferritin will then release iron to be chelated, as the more dangerous free iron is addressed first.
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New report/update. :biggrin
Updates: 3rd November, 2012: 4456.
Last report, September 22, 2012: 5354.
That means total decrease of 898 in just 42 days.
So happy, hahaha. :D
-P.
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:thumbsup Good news, Pratik. Keep it up.
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:thumbsup Good news, Pratik. Keep it up.
Thanks Andy. :biggrin
Corrected date, it's 3rd Nov today and not Oct, hehe.
On a side note, I cannot thank you and Thalpal enough for wonderful split dose guidance, all I'm achieving is because of that. Otherwise, I've never in my life saw this constant decrease of FE.
You were right, once it starts removing, its process speeds up little by little every time. :)
-P.
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Hey Pratik,
Congratulations :biggrin
Very good to see the lower level of Ferritin dear.
Whats your current dose?
Have u noticed any changes in Weight and Insulin dosage?
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Hey Pratik,
Congratulations :biggrin
Very good to see the lower level of Ferritin dear.
Whats your current dose?
Have u noticed any changes in Weight and Insulin dosage?
Thank you. :)
No, my weight is 42 kg only, and insulin dosage has slight decrease.
From what I recall from April 2009 experience of summer (4 months before which in January I got diabetes), my ferritin in May touched around 3300 and I had sudden drop of insulin dosage. I didn't needed to take Actrapid (short acting - 3 times a day) but just Lantus (Long acting - taken twice a day), so I was only poking 2 needles, and I was even eating mangoes (very very sweet fruit)!
So I believe when I'll have ferritin somewhere around 3500 or below, there might be a good sign awaiting for me, who knows, if iron has not rusted my pancreas in these 3 years. :(
And Dharmesh, we both are getting nice decrease, congrats to both of us, and this all due to Thalpal, long live Thalpal.
Oh and my current dosage is 1600 (800 in morning while another 800 in evening, split dosage).
-P.
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I guess I got an idea as to why this reduction happened at double rate.
Exactly when I got my last FE report done on 22nd September, I in a day or two after it had a sore throat. And I could not eat anything, because all used to get stuck, even full apple. I'm a great apple lover and consume around 5-6 apples daily. So from around 23rd Septmeber to this latest report on November 4, my mom used to peel/reap the skin of apple, and I used to eat them without the skin.
I guess we can easily say that if I am eating 5-6 apples a day, it should be increasing my iron daily by 9-10 units?
So we all know that the skin of apple holds most of the iron and during these 42 days, I was eating them without skin, so calculating daily apple iron by 10 x 40, we get around 400 units for 40-42 days.
Now, my iron always used to lower by 400 units, as per my calculation, but it was more than twice, this time.
So I very much feel this was all due to my not eating apple's skin along with the apple.
If so, I would be consuming them without the skin only.
What you all have to say? Andy, anyone?
-P.
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The amount of iron in an apple is not high. It is less with the skin removed, but either way, you're not getting a lot of iron from apples. Keep in mind that non-heme iron from vegetable food is poorly absorbed. One medium apple with skin has about .22 mg iron. Without the skin is .11 mg. Even eating 6 a day won't give you much iron. I think the reason your ferritin is dropping quickly is because of your own efforts to be fully compliant with chelation. The only foods I think should be limited are red meats because they have a high heme iron content, and this is most readily absorbed. There is one reason that the skin of apples might want to be avoided, and this is in the case of apples being treated with high amounts of pesticides. Otherwise, eat up. Fruit in general is recommended because they have high amounts of vitamins and antioxidants.
What has been learned with chelation is that the closer you get to 24/7 chelation, the better it works. Rust never sleeps and neither does the iron-caused oxidation in the bodies of those with an iron load. Chelation as close to constant and diet and supplements high in antioxidants are recognized as the best way to counter this and keep thals healthy.
To check nutritional content of foods, go to http://ndb.nal.usda.gov/ndb/foods/list
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Great, thank you Andy.
And I'm a vegetarian, so meat and all is not an option for me. :)
-P.
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I'm veg too, Pratik. :biggrin The only suggestions I have for diet in vegetarians is to make sure your diet is well balanced and that you avoid empty calories as much as possible. Excess iron absorption from food should not be a concern for vegetarians, so eat what you like as long as it's healthy food. You will get plenty of vitamins, minerals and antioxidants on a good veg diet.
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Great to hear that we share something in common he he. :biggrin
And yes, why kill animals when I can get something from natural source which is delicious? :)
-P.
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My Doc always do tell me that "If you are chelating don't worry about iron absorbtion from diet, veg food"
i was also taking methi / bhaji/ palak all kind of leafy vegetables daily twice...
So Cheers dear
but five apples daily are very high it replaces your diet like wheat , roti, rice etc.
means it should not replace regular diet.
it should be in addition to regular diet.
Because our diet is very well balanced like wheat, rice , protein etc.
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I hardly eat any rice, not because that I've diabetes, but I don't like it.
-P.
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It is very sad to say that this Ferritin report is not so good.
It's 5800. The last 41 days ago, it was 4546. So an increase of 1200 or so.
It is also important to note that I'm cutting out Exjade since past 2 weeks due to pain issues. Meanwhile, since 26th November 2012, I've been taking IP6.
Andy,
Could it be that these reports might be wrong (although I am being skeptical) because the iron might have entered blood stream meanwhile my blood work was taken? Not sure but I feel these reports would be possibly accurate.
Oh well, I've also seen my doc today and he gave me a medicine and also advised me to do Sonography, which I'll mostly get done tomorrow evening and that he'd advise furthermore after that.
Also Hep. C is negative and the doc also advised to do billirubin and so it's report will be heard tomorrow, let's hope for the best.
Iron results are little depressing though, I'm unable to take Asunra and my iron is packing up and transfusion is scheduled tomorrow, so I'm at stake of increase in iron again.
I worked so hard since May 2012 and made a good regime and iron plan, and when I see it defeating me, it's an issue that makes me upset.
But I appear more fairer than before, so I wondered how I could get this, but a good thing is that my sugar levels were high these days and this still leaves me with hope that when my iron would decrease, I'll again have nice functional pancreas.
-P.
edit: Andy, it is also important to note that I'm since couple of days eating my most loved fruit Wood Apple (Kothu in Indian language):
http://en.wikipedia.org/wiki/Limonia_(plant)
It's biological name is also referred to Ferronia Limnonia. Could we take Ferronia as in an Ferritin/iron based term? On good days, I eat up to 3 of them a day. Is it a problem?
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Pratik,
I wouldn't worry about the ferritin report. Since you are still having pain after 3 days off from taking supplements and Exjade, I think your problem may lie elsewhere. If you have any viral or bacterial infection or inflammation, your ferritin will rise, independent of iron load. I would suggest also stopping the wood apple for a few days and see if it has an effect. Wood apple is an astringent used to stop diarrhea and it may be having an intestinal effect that is causing pains. Only stopping it for a few days will tell you if it's involved.
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Pratik,
I wouldn't worry about the ferritin report. Since you are still having pain after 3 days off from taking supplements and Exjade, I think your problem may lie elsewhere. If you have any viral or bacterial infection or inflammation, your ferritin will rise, independent of iron load. I would suggest also stopping the wood apple for a few days and see if it has an effect. Wood apple is an astringent used to stop diarrhea and it may be having an intestinal effect that is causing pains. Only stopping it for a few days will tell you if it's involved.
So I take that the actual ferritin might not be high but due to viral? So what to consider, is it real or just reports showing that it has rose? Confused here.
Billirubin is also normal, Hep. C is negative, so it's great that I'm not having any potential big problems. My family doc also prescribed a medicine since yesterday to bring SGPT levels down and improve liver health, so I can start exjade ASAP. I'm going to get Sonography done on Monday most probably.
Andy, also any possibility that IP6 might be extracted iron out of organs and it maybe shown in the blood stream while the blood work was done? Is it possible?
About Wood Apple, sure. I thought too today to take it off as I've already ate good amount of them for the season (I love them lol).
Thank you very much.
-P.
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Forget this. Wrong results as I hoped.
Hello everybody!
First of all before proceeding or jumping off to anything or mentioning my reports, I want to ask;
Question #1: I've learned from this board from Andy that due to viral or bacterial infection, ferritin may rise. Then due to some viral infection (I'm suffering from mild cold and low fever, body temp is normal, just fever feeling since past 5 days), can FERRITIN go DOWN?
Firstly, I describe a little about the recent bad events in past 3-4 months. It was around beginning of December when I took IP6 and I got bad gas and constipation - I couldn't figure out that this was the cause until mid January and had stopped Exjade/Asunra for about 1 and half month with irregular and almost no doses! I had pain on both side of stomach due to gas and thought my liver or kidneys were humming up so I discontinued Exjade (foolishness!).
Then since 4th January 2013, I started with L1/Defriprone/Kelfar with low doses and sometimes no dose due to joint pain which I continued somewhere till January end, when I found this was all gas trouble and not an Exjade issue!
Thereafter, I started Exjade again (around January 2013 end) and been taking it successfully since then.
Before that, around 13/14th December, my ferritin reports stated 5800, there was a rise of 1200 unit since last report which was 4456 (which was done on October 3, 2012). And as mentioned above, after that the irregularity with chelation continued for about a month and a half.
Question #2: Could the above rise for December's S Ferritin report maybe due to extracted iron in blood stream and that the actual report might be low? Because this question would be quite viable for my next question that I'm going to ask.
So here comes question #3: I'm taking IP6 (500mg, 1000mg since past 2 days) since almost a week now and as IP6 binds iron, can Ferritin reports be shown low?
Now here comes the part where in my excitement I wish to use that F word (sorry, hehe). Tomorrow is my transfusion scheduled and here is the new Ferritin report after almost 3 months (find the attached pic!).
IT'S 1323! OH MY GOD, how could this be so very low? Is there some fault? (Report was done at same lab and same time in the morning as my all blood tests every time are). We have asked them to redo the test and we'll know tomorrow the result of it most likely.
But the correct difference would be known when next time (after 21 days) when I'll want to/would redo the ferritin test again to see if this is where I'm standing. I'm little skeptical for now but happy at the same time.
Been started on split dose regime since 28th April, 2012 (Thanks THALPAL!). I've seen much worse days in these recent months with almost no chelation.
Also all my life, I've never saw my ferritin reports under 3000, heck not even under 3500 most of the times as I was growing so this is something which is really an astonishment to me.
But it's not the time I be happy, the true results will be known tomorrow or maybe next time only but for now, I've a thing to cheer up on. Yeah baby! If I can too, the man who never saw his reports under 3000, you definitely could!
Also I want to add that my ALT/AST (SGPT/SGOT) levels are 54 and 65 respectively. When taking 1600mg Exjade (aggressive chelation dose per my weight), my ALT/AST were never lower than 80-90 and in recent cases stayed around 130 or so. I'm taking milk thistle since a week and I can now tell that it's helping me. Recommend it very much.
Creatine was 0.2, how nicely low despite taking good few protein supplements. I hope lower is fine as well, right?
Also taking green tea extract (or green tea) and IP6 will greatly aid in chelation from vital organs.
Andy has always been a standing pillar to me. He always keenly replied my messages despite it maybe annoying or the tough times he was going through and I really want to support this community and thalassemia majors in future. Perhaps if I end up being a millionaire I'll provide all healthcare facilities including medicines for free to all TMs. :rotfl
Andy, Sharmin, everybody, I'll be waiting for my answers on these crucial questions.
-P.
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Got the ferritin done again today from the same sample as yesterday, tremendous variation.
It's not 1323 but 5100, right as I hoped. The lab tech said they did some dilute check yesterday or something like that and so results were altered. I was pretty sure something was wrong.
But nevermind, I'm happy either way. Because there is still a hope for my diabetes to be cured! Because this was winter and my sugar levels were pretty good than last winter (they spike a lot in winters) so I know I'll be a lot better when I'll get the levels under 3000 and below.
I also have started Exjade/Kelfar combination since last week. 5 days Exjade, 2 days Kelfar (on weekends, 3/day - low dose).
After last report of 5800 in December mid, as I mentioned in my earlier post, I had stopped Exjade and in January beginning started irregular doses of Kelfar. The actual chelation started again in February, so levels of 5100 are very good in my view!
I'll try to get the levels near 3000 or below by June. Gotta throw lot of IP6 and green tea extracts now. ;) :rotfl
-P.
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Pratik
You are making progress, but I have been continually questioning ferritin reports from patients in India. I don't know why, but reports are making little to no sense. It is making it difficult to advise patients.
Ferritin would not drop during infections and inflammations. It would certainly rise as iron is sequestered in serum ferritin so that it is not available to any invading bacteria or viruses.
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I now do ferritin reports at only one lab, and after split dose, they've been great without any variation.
But this time, the method of checking was somehow altered and hence this result.
Nonetheless, even going through hard times, I made progress. I'll try to get below 3000 by the end of May.
-P.
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We misheard over the phone. Ferritin is not 5100 but 5417 as seen from the report I'm holding right now.
Nonetheless, still good considering I stopped chelating for about a month and this was outcome of only around a month's chelation.
I'll be upping IP6 dosage to 1500 today (3 caps) and see if I can adjust now to 1500 instead of 1000mg.
I think anyone whom IP6 is giving side effects like constipation could adopt my developed regimen. I started from small dose 500mg and took that for several days, then jumped onto 1000 and would jump to 1500 today and see if it can be adjusted to me. I'm glad that Puritan's products are complementing to me. I'll now look forward to order most of my vital supplements from them.
-P.
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No, it's not my report day but just came to post something interesting.
Whiteness is starting to appear and improve day by day in my feet/foot mainly. I was never black (note that my skin tone is very bright originally) and still improving day by day.
God knows how much brighter would I look originally should I not have had iron overload. :wink
The opposite side of my palms (i.e. the wrist and fingers part) is also starting to show improvement lately in fairness.
edit: Did I said that I've been getting hypoglycemia/low sugar and late sleep due to it daily since 5-6 days despite my lowering 4-5 units of my short acting insulin and even not taking long acting one at night?
I really look forward to the day where my ferritin would be something admirable. I live everyday in the same hope to live back or flow back into the vista of good old golden days when I was a kid and I didn't had diabetes. I was 14 on 24th January 2009, and I was still 14th on 25th January when I woke up to the devastating news as a kid.
Diabetes did taught me a lot of things as well, one of them importantly living and eating healthy and well.
Now the present scenario is such that every event of my life is compared by me naturally to my present and past before diabetes. If it was not this, then...? I hope I'll be able to curb these ifs one day and laugh at my previous years.
Anyway, been taking 3 IP6 daily (1500mg) along with 1600mg Exjade. I stopped IP6 for 2 days recently just to solve some gas related problem and now back on it!
I'm now keenly awaiting for next ferritin report which will be after 1 week.
Best,
-P.
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You're seeing real progress. Watch your sugar levels closely, as your insulin requirements appear to be dropping and should with your current chelation regimen, and I include IP6 as part of that regimen. IP6 is well known for its quality of quickly removing iron from your skin. Be assured that it is also working in your organs and glands.
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You're seeing real progress. Watch your sugar levels closely, as your insulin requirements appear to be dropping and should with your current chelation regimen, and I include IP6 as part of that regimen. IP6 is well known for its quality of quickly removing iron from your skin. Be assured that it is also working in your organs and glands.
I'm very glad to hear such good assurance statements every time, especially from you. :biggrin
Phew. Not wanting to make any conclusion and then get sad but:
Without IP6, my ferritin every 42 days was getting lowered by around 600-800 units. I'd now assume that with IP6, it should be at least 800-1000 units drop every 42 days.
Let's see on the Friday (next week)!
Best,
-P.
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Also one more question,
If I take IP6 around my blood work days, would there be any influence of wrong report possibly in my ferritin readings as it binds the iron?
-P.
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It will not affect any tests.
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Here are what lab reports read today:
Last result on 08 March 2013 was 5417.
Todays result after standard 42 days: 4756.
That means a reduction of 661 in 42 days.
Not very high reduction but still very good. I'm acquiring much fairness than what I had at 4456 a couple of months ago. So I think my skin iron is also being removed along with organs. I guess I could treat to IP6 for fairness.
Lets see how fair I get once I reach below 1000. :D
-P.
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Here are what lab reports read today:
Last result on 08 March 2013 was 5417.
Todays result after standard 42 days: 4756.
That means a reduction of 661 in 42 days.
Not very high reduction but still very good. I'm acquiring much fairness than what I had at 4456 a couple of months ago. So I think my skin iron is also being removed along with organs. I guess I could treat to IP6 for fairness.
Lets see how fair I get once I reach below 1000. :D
-P.
Also,
I take IP6 after meals so as they are easy on stomach. That might be reducing it's efficacy?
-P.
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What are your views Andy?
-P.
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Pratik,
I would not worry about when you take IP6. It is obviously working, as the first sign you see from IP6 is skin lightening. As I've mentioned before, what you don't see is most important. You cannot see IP6 cleaning your pituitary but it is working to do so. Your progress continues to be good. Please be aware that a point will come when your tissue iron is greatly reduced. At that time, you will see the ferritin drop to the range you want. Keep in mind, that even with intensive chelation, it takes around a year and a half to clean the iron from the heart. Patience and perserverance are the keys.
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Thank you very much Andy, your words sooth me. Starting to get signs of positive results.
Also, I have observed that my heart beats are getting better, especially through the half cycle of the transfusion when Hb is little higher.
Also I don't take green tea extract as it made my heart race at 140 b/m like a mad man and I couldn't sleep. When I tried it again, the same followed up. I was only taking one capsule, still.
I think I'll try to prepare green tea of the capsule in half-half dosage. One half in morning and other in the evening and see.
-P.
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Back with some updates.
On 17 April, 2013 my ferritin was 4756.
As of 26th August, 2013, it is 4300, that means a reduction of 356 units in 4 months.
I know this may not seem much reduction, but these past months my SGPT rose a little higher and is still around 81 or so, so 2-3 days I stopped it and then for like 2 weeks, I took only 1/4th or 1/2 of my dose (1600 mg, normally).
Still I'm happy.
I sometimes now get hypoglycemia in the morning 7 AM (it just starts, not intense one) when I wake up to take Asunra, so that time I eat apple to cope up. It only occurred sometimes but still, even though I discontinued and stopped taking Lantus (long acting insuline) during night (sleep time). Yep, that's right, I don't take the night long acting dosage since quite a while now.
I hope by end of this year, I can truly see ferritin somewhere around 3000-3300, because no matter whatever efforts I make it just somehow doesn't go below 4K or some problem arises and I need to keep myself cool on the dosage for a while. I hope I am just able to conquer things this time. This topic was started more than an year ago, 28th April 2012, I remember the date when I started split dosage, still I feel that somehow I'm still there at the same place. Hope I really am able to make a come back and throw down my ferritin rapidly now.
Best,
-P.
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Hi P,
At least it is not a bad news as ur fe do not jump to higher value inspite of ur low dosage
Are u getting frequently hypo in morning? If yes u should adjust the dosage of night by one or two units.
Me too got hypo today :hugfriend
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I just hate this a lot now.
On 26 August, 2013, my ferritin was 4300. And as per today's report of 14 November, 2013, it is 5100. It is true that I transfuse these days in recent months 2-4 days earlier than my regular time span (21 days, two bags of blood, around 450-500 CC). But it still shouldn't jump like this I believe.
However it is also true that I'm noticing a lot of difference in my sugar levels and that it is relaxing these days a bit by bit, so that's the only positive thing I've in my mind currently.
Why the heck this happens every time? I just can't understand this logic.
Any suggestions or ideas Andy?
-P.
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Have patience and observe the improvements. Ferritin is a frustrating measure. I would pay far more attention to the improvement you see in your sugar.
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Hey everybody and Andy,
I forgot to update the last report, i.e. of January 11, 2014.
Giving an insight on the background of last few months first, my ferritin was last checked on around November 11, 2013, so exactly around 2 months or so from the time of the latest reports. Back then, it was 5160.
Thereafter in these two months and since long, the blood many a times came thick (automated machine process sometimes made it very thick) and hence many of the times, the full blood won't be transfused and as a result the transfusion frequency also increased slightly. But a nice thing is that since past 2 times, the quality is again great.
Meanwhile, I was still taking 1600mg Exjade dosage. It was only recently (20 days ago or so) that I pushed the limit to 1800mg.
And the report on 11 Jan 2014 read as 4653. So a reduction of around 500 units in 2 months despite of little more transfusing, which is good I think! Hopefully, now, the progress will continue the same and it won't betray me. :)
-P.
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Hi Pratik how are you doing now? It has almost been a year since you updated your status. How is the ferritin and your exjade dose?
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Sorry for not updating this.
After couple years of procrastination and ordering desferal pump and first few doses of desferal vials in the late November, 2015, I am happy to announce that it is today my first day of taking Desferal.
As today was my first time (I take insulin so poking needle wasn't scary or that new to me in the skin), I waited for my mom to return from office at 6 PM and then began transfusing 1 vial (500 mg) with 5 ML of water. It's 1 AM here now and it's just completed.
Feels good, a little awkward as it's a new thing and tool to hang around and move (lol), but with time I'll get adjusted. The leg feels heavy (the one which was under infusion) as a good amount of liquid passes through. I believe it should be fine when I wake up in the morning.
My ferritin as of around mid February is around 5100 (no decrease or increase with Exjade alone). So now I will be taking Desferal along with Exjade as combination therapy with almost same dose of Exjade being continued (1600 mg).
The real fight against Iron starts now for me. I want to see where I will be in next 9-12 months. I plan to take at least 25 (if not 30) vials/month (1 per day on avg). 25 because some days I might want to skip and just relax. But that's the plan.
One important question I want to ask about Desferal's side-effects is whether the hearing loss problem is same as Exjade or it could be worse than it? Asking because I saw Dharmesh's response in one thread that he has significant hearing loss due to desferal. Andy or any members please kindly share their experience as I am relatively new to learning the ins and outs about it.
I am having vision problems currently (more so in left eye majorly) like blurred/hazy vision. It's not due to Exjade (got it checked with Retina specialist) and it's not cataracts or any of eye side effects of Exjade. Doc is suspecting it's vitreous hemorrhage / retinopathy (leaking of blood vessels in eye). Naybe due to diabetes and a bit above norm sugar levels in past few months being diabetic? Not sure (Winter isn't good for diabetics as blood sugar levels don't play fair during cold). Little scary - vision is most important thing for me and the thought of losing it alone is scary. He has advised to come under 1 week and get Angiography done for further investigation/diagnostics. I am trying natural remedies such as beet/carrot juice and keeping cold cucumber rings in eyes till then and will see if any of it helps any bit.
That's it about my recent update. Will keep you guys posted. :)
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I wish I could better answer the question about Exjade's effect on hearing, but I don't think the data is there. The anecdotal reports I have heard suggest that it is not as bad a problem with Exjade as it is with desferal.
Your combination chelation program should help your diabetes, as well. Umair has seen a great reduction in the amount of insulin he takes since he got his iron load under control. Hopefully, this will mean some of the other problems will be somewhat alleviated.
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Hearing problem occurs when one takes desferal in full dosage initially. In your case full dosage comes to 2000 mg daily or 4 vials.
As per the protocol you must get checked your eyes and ear before starting desferal.
Glad to know that you started Desferal.
Bravo
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Thanks for the advice, Andy, Dharmesh. You and people on Thalpal are the ones I could rely and count on at any given time!
So today was a rest day. Tomorrow I will take again in another leg (I take in thighs). Beginning slow, allowing the medicine to adjust my body as per advise of Dharmesh, which sounds just about right.
Now, I am not sure if it's a coincidence or what but today since morning, I'm having skin/fat on the sideways of both side of stomach being stretched, as if it was hit by something mild and is resulting in muscle pain (but nothing was hit in real). And it's not any gastric problem, so we can rule that out. I am also having mild heavy head (pain) since evening, more so just around the region of eyebrow bones.
Andy, is this just a bad position that I slept in (stomach issue) or whether desferal could cause any of this? Like I've said, I've taken in thighs so most probably this shouldn't affect stomach or any regions around. But who knows. I only took 1 vial (500 mg) in 5 ML water like I said yesterday, so no heavy dosage were administered.
Thanks.
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Pratik,
This may be a mild reaction to the new drug, desferal. Stay on the low dose and see if the problem resolves itself. It's always best to start slowly with any new chelator. It takes the body some time to get used to the drug. I also recommend turmeric for the pain. I take turmeric with black pepper capsules and they work well against various types of pain.
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Pratik,
This may be a mild reaction to the new drug, desferal. Stay on the low dose and see if the problem resolves itself. It's always best to start slowly with any new chelator. It takes the body some time to get used to the drug. I also recommend turmeric for the pain. I take turmeric with black pepper capsules and they work well against various types of pain.
Thanks a lot Andy.
And yes, my mom prepares hot turmeric (mixing original turmeric in hot water and adding little salt to it) and we drink it during breakfast every day. I believe it helps in some ways at least to body. It has been used for centuries as one of the finest herbs. :)
It's 10:30 AM now (woke up 30 mins ago) and the symptoms I mentioned last night are greatly reduced, almost by 90-95%. So yes, you are probably right, it might be a mild reaction of desferal.
I am going to take another dose today in under 30 minutes. Let's see how it goes today!
Best,
-P
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It has been 3 and half hours since the ongoing of desferal and I can somewhat now confirm that previously mentioned side effects (stomach pain, mostly side ways that too mostly on left side) and mild headache (just around eyebrow bones) might be due to it. Like I said, I woke up this morning with feeling 95% better than yesterday and just 2 hours after starting infusion, those symptoms are appearing again.
Andy, I am personally okay with it as they are not that bad or troublesome but the only thing I am worried is that the pain (majorly) is on left sideways of stomach region, where spleen and liver is (I believe?). So should that be any alarming or it's nothing more than a muscle pain?
Somewhat similar symptoms are listed here - http://www.rxlist.com/desferal-side-effects-drug-center.htm . Should this be alarming or should I continue treatment at 1 vial (500 mg) every alternate day?
I take infusion in thighs like I said and not in stomach unlike many.
Did anyone who take or used to take desferal in past experienced similar symptoms? If so, when? During the beginning in the first few days? Did it went away gradually as the medicine becomes adjusted to body?
Thanks. :)
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I'd like to hear from others on this, as well, but I don't think it's any serious issue. Desferal is excreted through the kidneys, so the liver and spleen are not really involved. I think it's most likely either an abdominal pain or a muscle pain, either one would be related to desferal, but not considered as serious side effects. However, if the pain suddenly gets worse, stop desferal and consult with your doctor.
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Headache is quite common with Desferal.
Abdominal pain should resolve within a few days of desferal.
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Headache is quite common with Desferal.
Abdominal pain should resolve within a few days of desferal.
Thanks for the reassurance Dharmesh. Yes, headache now seems quite common when I take desferal.
About abdominal pain and gastro problem due to it, did you and anyone else who is/was taking desferal faced it?
I was reading the below webmd article and reading it's side-effects which was a little alarming and distressing - http://www.webmd.com/drugs/2/drug-9123/desferal-injection/details#side-effects
Specifically:
Rarely, this drug may cause serious (sometimes fatal) bacterial or fungal infections. Get medical help right away if you notice any of the following: unexplained diarrhea/abdominal pain/fever.
I'd appreciate inputs from Andy and other members on this.
Thanks.
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Hey Andy, Dharmesh and everyone,
I am not sure if this is coincidental or what but I'm having mouth ulcers roughly some days after starting desferal. It has been there for 3 weeks now. The back of my tongue is sore, and there is redness near the tonsil stones walls (on the sideways). I also have somewhat big ulcer on my lips.
I saw my physician 2 weeks ago and he said not to worry and wrote some B vitamins and a gel to help it soothe. However, there is no major effect still. I again saw him 2 days ago and he said to continue the treatment and not to worry.
I am very worried now (I am extremely paranoid lol) about mouth cancer since I never had ulcers that lasted such long. I am not sure if this is one of the side effect of desferal? That's what I wanted to ask. I've discontinued desferal for a week now to see if it has any relief on this. Did anyone who took desferal had any such side effects ever, especially when beginning it?
I am also going to see my dentist today and see what he has to say.
Would like to know your opinions on this.
-Pratik
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MY FRIEND.
Assalamualaikum Wa Rahmatullah.
I started for my son EXJADE from last september/15. Whenever he continued that tablet. I follwed his daily health status. After one week (Tanzim) complained me that inside of his mouth some of place was paining & become red. I checked & started fegonia juice once daily 10ml. After one week he was got relux from that. Please you can apply the same.
Thaks to all thall.
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MY FRIEND.
Assalamualaikum Wa Rahmatullah.
I started for my son EXJADE from last september/15. Whenever he continued that tablet. I follwed his daily health status. After one week (Tanzim) complained me that inside of his mouth some of place was paining & become red. I checked & started fegonia juice once daily 10ml. After one week he was got relux from that. Please you can apply the same.
Thaks to all thall.
Dear Tanzim,
Thanks so much for your input. I was research more about Fegonia. I am not very native to the name but a simple google search showed that the local (Indian? not sure) name seems Dhamasa.
Just to make sure, you crush it and drink around 10 ml of it daily?
Thanks a lot.
-Pratik
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Hi
If you get fegonia/Dhamassa (same). Try to collect it's leaf & flower, blended it. Have take 10- 15 ml juice in between meal. & please check HEALTHY MANNERS.COM about Fegonia details.
If it is usefull for you, I wil be glad.
Thanks.
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Hallo Tanzim,
There was a discussion about fegonia in this group previously. Here is the link below.
http://www.thalassemiapatientsandfriends.com/index.php/topic,4499.0.html
Are you taking it regularly ?
Please explain it's benefits and share your experiences with it.
Thank you.